I'M INNA BELFER AT THE NATIONAL
INSTITUTES OF HEALTH.
ON BEHALF OF MY CO-CHAIR AND
COMMITTEE I WANT TO WELCOME YOU
ALL TO DAY TWO OF THE SEVENTH
ANNUAL PAIN CONSORTIUM ENTITLED
PAIN MANAGEMENT THROUGH THE LENS
OF HEALTH.
AND NOW PLEASED TO INVITE
DR. LANGEVIN DIRECTOR FOR THE
CENTER FOR COMPLIMENTARY AND
INTEGRATIVE HEALTH TO BEGIN DAY
TWO WITH OPENING REMARKS.
DR. LANGEVIN.
>> THANK YOU VERY MUCH.
IT IS REALLY MY PLEASURE TO OPEN
THE SECOND DAY OF THIS ALREADY
FASCINATING SYMPOSSYMPOSIUM.
THIS WORKSHOP IS VERY TIMELY AS
WE'RE BECOMING INCREASINGINGLY
AWARE OF THE ASPECTS OF PAIN AND
PAIN MANAGEMENT.
OVER THE PAST DECADES PAIN
RESEARCH AND PAIN CARE HAS
MOSTLY FOCUSSED ON PAIN AS A
SYMPTOM AND PAIN MANAGEMENT HAS
RESIDING WITHIN THE NERVOUS
SYSTEM.
BECAUSE OF THIS, WE TEND TO
THINK OF PAIN MANAGEMENT AS
ANALGESIA.
AS WE'VE BEEN LEARNING
THROUGHOUT THIS SYMPOSIUM, THE
REALITY IS MORE COMPLEX.
I'M DELIGHTED THE WHOLE PERSON
HEALTH HAS BEEN CHOSEN AS A
THEME FOR OUR DISCUSSION AS IT'S
OF GREAT INTEREST TO NCCIH AND
CENTRAL TO OUR NEW STRATEGIC
PLAN.
NEXT SLIDE.
AT NCCIH WE THINK OF WHOLE
PERSON HEALTH AS HAVING TWO
COMPONENTS.
THE WHOLE PERSON COMPONENT WHICH
EMPHASIZES THE CONNECTIONS
BETWEEN THE DIFFERENT
PHYSIOLOGICAL SYMPTOMS AS WELL
AS ACROSS THE BIOLOGICAL,
BEHAVIORAL AND SOCIAL AND
ENVIRONMENTAL DOMAIN.
AND THEN THERE'S THE HEALTH
COMPONENT WHICH EMPHASIZES THAT
HEALTH IS ON WHAT WE CALL A
BI-DIRECTIONAL ACCESS BETWEEN
HEALTH AND DISEASE WITH
OPPORTUNITIES NOT ONLY TO
PREVENT DISEASE BUT ALSO TO
RESTORE HEALTH.
SO UNDERSTANDING PAIN THROUGH
THE LENS OF WHOLE PERSON HEALTH
MEANS TWO THINGS.
FIRST, IT MEANS LOOKING AT PAIN
AS A CONVERSATION BETWEEN A
NERVOUS SYSTEM AND THE REST OF
THE BODY INCLUDING MULTIPLE
ORGANS AND SYSTEMS AND SECOND IT
MEANS TO THINK OF CLINICAL
APPROACH TO PAIN BEYOND SYMPTOM
MANAGEMENT AND ALSO INCLUDE
RESTORATION OF HEALTH AND
FUNCTION AND EVEN PREVENTING
PAIN FROM OCCURRING IN THE FIRST
PLACE.
WE HEARD YESTERDAY EXAMPLES OF
HOW PAIN INTERFERES WITH SLEEP,
FOR EXAMPLE, AND SUBSTANCE USE
DISORDERS AND HEARD GREAT
EXAMPLES ON CHRONIC OVERLAPPING
PAIN CONDITIONS SUCH AS PELVIC
PAIN AND IRRITABLE BOWEL
SYNDROME AND FIBROMYALGIA WHICH
INVOLVES MANY ORGANS AND PARTS
OF THE BODY.
IT'S ALSO IMPORTANT TO THINK OF
THE SYSTEMS THAT MAY NOT BE
OBVIOUSLY INVOLVED IN THE PAIN
SYMPTOMS THEMSELVES AND HOW THE
SYSTEMS CAN NEVERTHELESS BE
IMPORTANT FOR ADDRESSING A
PATIENT'S PAIN FROM THE POINT OF
VIEW OF THE WHOLE PERSON.
FOR EXAMPLE, SOMEBODY WITH PAIN
IN THEIR KNEE MAY BE UNDER
STRESS AT WORK AND HAVE
DIFFICULTY SLEEPING AND ALSO NOT
GETTING ENOUGH EXERCISE AND
MAYBE HAS TROUBLE STICKING TO A
HEALTHY DIET AND MAYBE GAINED
SOME WEIGHT AND ALL THESE
FACTORS COULD BE CONTRIBUTING TO
THE KNEE PAIN.
EVEN THOUGH SOME OF THE PAIN
MECHANISMS MAY NOT BE ALL PAIN
MECHANISMS PER SE, TREATING PAIN
IN THE CONTEXT OF THE WHOLE
PERSON MEANS ADDRESSING THE
PROBLEMS AS WELL.
AS DR. GODET POINTING OUT
YESTERDAY NUTRITIONAL AND
PSYCHOLOGICAL THERAPIES CAN HELP
WITH PAIN AND I'M DELIGHTED TO
INTRODUCE TODAY'S KEY NOTE
SPEAKER WHO IS A LEADER IN PAIN
MANAGEMENT STRATEGIES THAT TRULY
ADDRESS THE WHOLE PERSON.
DR. WOLEVER IS A PROFESSOR OF
MEDICINE AND REHABILITATION AT
VANDERBILT MEDICAL CENTER AND A
CLINICAL PSYCHOLOGIST AND BOARD
CERTIFIED HEALTH AND WELLNESS
COACH AND HAS OVER 25 YEARS
EXPERIENCE TRAINING AND
MENTORING MEDICAL AND ALLIED
HEALTH PROFESSIONALS IN
EMOTIONAL HEALTH AND HEALTH
COACHING AND DESIGNING,
IMPLEMENTING AND EVALUATING
BEHAVIOR CHANGE PROGRAMS.
HER RESEARCH HAS BEEN FUNDED BY
THE NATIONAL INSTITUTES OF
HEALTH INCLUDING NCCIH AND THE
OFFICE WOMEN'S HEALTH, NATIONAL
HEART LUNG AND BLOOD INSTITUTE,
NATIONAL INSTITUTES FOR DEAFNESS
AND COMMUNICATION DISORDER AND
THE U.S. AIR FORCE CENTER FOR
MEDICARE AND MEDICAID SERVICES,
INDUSTRY AND PHILANTHROPY.
PRIOR TO JOINING VANDERBILT SHE
WAS THE FOUNDING RESEARCH FOR
DUKE INTEGRATIVE MEDICINE AND
ASSOCIATE PROFESSOR AT DUKE.
SHE EARNED A Ph.D. AT THE
UNIVERSITY OF MIAMI,
POST-DOCTORAL FELLOWSHIP AT DUKE
MEDICAL CENTER AND LOOKS AT
MINDFUL AND BEHAVIOR CHANGE AND
HER TALK IS ENTITLED THE VALUE
OF DECONTSTRUCTING EXPERIENCE TO
DISCOVER THE WHOLE PERSON.
THANK YOU SO MUCH FOR JOINING US
DR. WOLEVER.
>> THANK YOU, I APPRECIATE THE
INVITATION AND THAT OF THE
ENTIRE COMMITTEE FOR THIS
WONDERFUL PAIN CONSORTIUM.
I'LL BE TALKING ABOUT THE VALUE
OF DECONTSTRUCTING EXPERIENCE AS
A WAY TO REALLY ACCESS THE WHOLE
PIRN -- PERSON.
THESE ARE DISCLOSURES.
SO MY OBJECTIVE IS THAT THROUGH
THIS TIME WE SPEND TOGETHER I
HOPE TO HELP YOU DEVELOP A
CONSENSUAL UNDERSTANDING OF
HUMAN EXPERIENCE PERHAPS FROM A
SLIGHTLY DIFFERENT LENS THAN YOU
MAY BE USED TO.
WE'LL TALK ABOUT HOW LEARNING
CREATES THE COMPLEXITY OF THE
WHOLE PERSON AND HOW
DECONTSTRUCTING EXPERIENCE
ACTUALLY ALLOWS ACCESS TO THE
SELF.
I WILL SHARE SOME RECENT NEURAL
SCIENTIFIC MODELS IN SUPPORT OF
WHAT I'LL BE TALKING ABOUT AND
TRY TO SPRINKLE IN EXPERIENTIAL
INFORMATION.
SO THANKS TO DR. LANGEVIN FOR
SHARING THE NCCIH'S PERSPECTIVE
ON WHOLE PERSON HELPS AND LOOKS
AT MOLECULES UP TO THE WHOLE
PERSON AND IN THESE MULTIPLE
DOMAIN THE PERSON AS AN
INDIVIDUAL WITH MULTIPLE DOMAINS
AND ALSO IN CONTEXT WITH THEIR
LIVING SITUATION AND FAMILY AND
COMMUNITY AND THE POPULATION AT
LARGE.
SO THIS IS THE MODEL WE USE AT
THE CENTER FOR INTEGRATIVE
MEDICINE AND HEALTH AT
VANDERBILT.
THIS IS ANOTHER KIND OF WHEEL OF
HEALTH.
DR. GAUDETTE PRESENTED IT FROM
THE V.A. AND THE HEALTH
INSTITUTE.
YOU'LL NOTICE AT THE CENTER IS
LIKE THE ONES YOU'VE SEEN, SELF.
WHAT I WOULD CALL THE CORE SELF
OR THE TRUE SELF AND THE
BRIGHTLY COLORED AREAS ARE
VARIES DOMAINS IN AN
INDIVIDUAL'S LIFE.
WITHIN EACH OF THESE DOMAINS ARE
STRATEGIES TO OPTIMIZE HEALTH
AND WELL BEING AND PREVENT SOME
TYPE OF CHRONIC PAIN AND YOU MAY
THINK OF THE PATIENT WHO COMES
TO YOU AS A CLINICIAN BECAUSE
THEY'RE EXHAUSTED.
THEY'RE PAIN IS CONSISTENT OR
VERY FREQUENT AND START AT THE
TOP ORANGE THEY MAY NOT HAVE A
VERY ROUTINE DAILY SCHEDULE
BECAUSE THEIR PAIN IS TOO
UNPREDICTABLE.
THEY MAY NOT BE MOVING A LOT.
THE AREA OF MOVEMENT AND
EXERCISE AND PLAY MAY BE
UNDERMINED.
THEY MAY BE OVER EATING OR UNDER
EATING DEPENDING ON THE ACCESS
TO COMFORT FOODS AND ACCESS AND
AFFORDABILITY OF HEALTHFUL
FOODS.
THEY'RE ENVIRONMENT MAY BE
CHAOTIC DOWN TO CHAOTIC BECAUSE
THEY DON'T HAVE THE ENERGY TO
TEND TO IT OR MAY BE MORE
CHAOTIC FOR THINKING OF PEOPLE
THAT ARE STREET DWELLERS.
SLEEP MAY BE UNDERMINED BECAUSE
THE SLEEP DRIVE MAY BE UNDER
MINDED BECAUSE PERHAPS THEY'RE
RESTING FOR LONG PERIODS
THROUGHOUT THE DAY IN AN ATTEMPT
TO ALLEVIATE PAIN AND OFTEN
THEY'VE WITHDRAWN FROM KEY
RELATIONSHIPS AND ACTIVITIES
THAT USED TO BE MEANINGFUL TO
THEM AGAIN BECAUSE IT'S SO HARD
TO PLAN WITH THE
UNPREDICTABILITY OF PAIN OR THEY
MAY HAVE PATTERNS OF THOUGHT
LIKE RUMINATION OR
CATASTROPHIZING AND THE WAY THEY
MAKE MEANING FROM THEIR
EXPERIENCE THAT DEFINES THEM
THAT MAY NOT HELP THEM OPTIMIZE
THEIR WELL BEING.
THE SAME AREAS MAY BE AREAS IN
WHICH TO BEGIN TO EXPLORE WHERE
THEIR BEHAVIORS ARE MALADAPTIVE
AND WHERE THEY ARE ADAPTIVE.
SO I THINK ABOUT THIS AND THE
PRESENT PLAY OF THE AREAS LIKE A
MOBILE YOU HANG OVER A BABY'S
BED, YOU MOVE ONE LITTLE PIECE
OF THE MOBILE AND THE WHOLE
THING STARTS TO ADJUST.
SO WHEN ASKING YOURSELF WHERE TO
START WITH THE PERSON I THINK
IT'S USEFUL TO RECOGNIZE MANY
THINGS WILL PLAY OUT AND YOU
DON'T ALWAYS NEED TO START IN
THE SAME PLACE.
WHAT MAKES MOST SENSE IN GENERAL
IS TO START WHERE THE PATIENT
HAS THE MOST ENERGY TO FOCUS.
WHERE THEY ALREADY HAVE SOME
INTRINSIC MOTIVATION TO MAKE
EFFORTS WHICH MIGHT IN THE
IMMEDIATE FUTURE MAY SEEM
CONTRAINDICATED BECAUSE THEY MAY
ACTUALLY HURT.
I ALSO WANT TO ACKNOWLEDGE THE
ROLE OF STRESS IN THIS BECAUSE
STRESS REALLY DEEPLY INGRAINS
OUR HABITUAL PATTERNS AND CAN
MAKE IT MORE DIFFICULT TO LEARN
NEW WAYS OF BEING.
SO THERE'S A PARADOX HERE.
THERE'S LOTS OF PARTS THAT NEED
TO BE PUT TOGETHER TO CONSIDER
THE WHOLE.
AND SIMILARLY WE HAVE TO GO VERY
DEEP AND GRANULAR IN INDIVIDUAL
PARTS TO UNDERSTAND THEM.
SO I JUST WANT TO ACKNOWLEDGE
THE TENSION BETWEEN THOSE TWO
THINGS I'M GOING TO GO VERY
GRANULAR TO THEN TALK ABOUT HOW
DECONTSTRUCTING, UNDOING
PATTERNS OF EXPERIENCE CAN
ACTUALLY GIVE US MORE ACCESS TO
SELF.
SO FOR THOSE THAT DON'T HAVE A
LOT OF DEEP SEA FISHING
EXPERIENCE, THIS IS SOMETHING
CALLED A BAIT BALL.
YOU MAY OR MAY NOT BE FAMILIAR
WITH IT.
IT IS A SURVIVAL STRATEGY FOR
SMALL FISH.
SO WHAT HAPPENS IS FROM FAR AWAY
THE SMALL FISH LOOK AS IF
THEY'RE A SINGLE ENTITY BUT IF
YOU ZOOM IN CLOSE, THERE ARE
HUNDREDS AND HUNDREDS OF FISH
ALL MOVING TOGETHER IN THE SAME
WAY TO TRY TO CREATE THIS IMAGE
THAT THEY'RE EXPECT BIGGER SO A
PREDATOR SHOULDN'T BOTHER.
WELL, THIS IS A GREAT ANALOGY
FOR BEHAVIOR AND FOR PATTERNS
THAT INVOLVE BEHAVIOR AND
EMOTION THAT INVOLVE SENSATION
AND THAT OFTEN BECOME ENGRAINED
AND MOVE TO BE OUTSIDE OF OUR
AWARENESS.
SO THESE PATTERNS OF BEHAVIOR
ARE OFTEN TRIGGERED BY AN
EXTERNAL QUEUE BUT WE ALL KNOW
THEY CAN BE TRIGGERED BY
INTERNAL QUEUES.
OVER TIME WHEN WE'VE REPEATED
THE PATTERN SO FREQUENTLY WHAT
HAPPENS IS A PERCEPTION, A
SENSATION, A THOUGHT, AN
EMOTION, AN URGE TO ACT, ALL OF
THESE THINGS BECOME GLOMMED
TOGETHER LIKE THIS BIG BAIT BALL
AND THEY'RE REINFORCED BY SOME
TYPE OF REWARD AND THROUGH
PRACTICE THEY MOVE AS I
MENTIONED OUTSIDE OF OUR
AWARENESS.
SO RIGHT NOW, FOR EXAMPLE, YOU
KNOW HOW TO PARTICIPATE IN A
SYMPOSIUM SO YOU SIGNED UP, YOU
LOGGED IN AND HERE YOU ARE
PERHAPS YOU'RE LISTENING TO ME.
HOPEFULLY YOU'RE LISTENING TO ME
AND HOPEFULLY THERE'LL BE SOME
REWARD.
YOU'LL EXPAND YOUR WAY OF
THINKING OR PERHAPS YOU'LL MEET
A COLLEAGUE THROUGH THE
SYMPOSIUM.
HOPEFULLY THE SYMPOSIUM WILL
PROVIDE YOU YOUR BEHAVIOR AND
THE REWARD THAT WILL ENCOURAGE
TO YOU GO TO ANOTHER SYMPOSIUM.
THE THING IS WHILE YOU'RE BEING
THE QUINTESSENTIAL ACADEMIC
SKILLED IN PARTICIPATING IN
SYMPOSIUM, THERE'S AN INCREDIBLE
AMOUNT OF INFORMATION AVAILABLE
TO YOU RIGHT NOW SHOULD YOU
DECIDE TO ACCESS IT.
SO FOR EXAMPLE, IF YOU WANTED
TO, YOU COULD FEEL DOWN INTO
YOUR TOES.
CHANCE ARE YOU HAVEN'T BEEN
PAYING THAT MUCH ATTENTION TO
YOUR TOES RIGHT NOW BUT YOU
COULD ACCESS SENSATION IN YOUR
TOES RIGHT NOW.
MAYBE YOU COULD EVEN FEEL EACH
ONE OF YOUR TOES.
OR CONTINUE ON THE SOUND OF MY
VOICE OR EXPAND YOUR AWARENESS
TO DISCOVER AMBIENT SOUNDS
AROUND AND MAYBE YOU HEAR THE
AIR HANDLER OR COMPUTER OR PET
SNORING NEARBY.
WHATEVER THOSE AMBIENT SOUNDS
MAY BE.
THERE'S SENSORY INFORMATION
AVAILABLE TO YOU YOU MAY OR MAY
NOT HAVE BEEN ATTENDING TO
BEFORE I DIRECTED YOUR ATTENTION
THAT WAY.
THIS IS REALLY IMPORTANT BECAUSE
IT GIVES YOU ACCESS TO OTHER
PIECES OF EXPERIENCE THAT YOU
CAN USE TO CRAFT A NEW PATTERN.
LET'S TALK BRIEFLY ABOUT
PROCEDURAL LEARNING BECAUSE IT'S
THE PROCESS WHERE WE DEVELOP
EITHER A SERIES OF MOTOR SKILLS
OR A SERIES OF PERCEPTUAL SKILLS
THAT BECOME ENGRAINED IN THIS
QUEUE PATTERN REWARD PIECE.
YOU MAY THINK OF TYING YOUR
SHOES.
WHEN YOU FIRST LEARNED TO TIE
YOUR SHOES YOU HAD TO FOCUS
ABOUT HOLDING THE LOOP AND GOING
AROUND THE LOOP WITH THE OTHER
LACE.
BUT NOW PROBABLY TIE YOUR SHOES
WHILE YOU'RE TALKING TO
SOMEBODY.
YOU CAN DO MULTIPLE THINGS.
IT'S WONDERFUL FOR AN EFFICIENT
PROCESSING SYSTEM.
THE PROBLEM BECOMES WHEN THAT
BECOMES AUTOMATIC IN A WAY
THAT'S ACTUALLY NOT SUPPORTING
OR OPTIMIZING YOUR HEALTH AND
WELL BEING.
THE PROCEDURAL LEARNING THEN
BECOMES A JUST MOTOR EXPERIENCE
BUT IT BECOMES MORE COMPLICATED
BECAUSE OF ASSOCIATIONAL
LEARNING AND THERE'S PAVLOV'S
DOG AND WE LEARN TO ASSOCIATE
QUEUES WITH VISCERAL SOMATIC
SENSORY INFORMATION.
WE CAN LEARN TO DO PHYSIOLOGICAL
PROCESSES COMPLETELY OUTSIDE OF
AWARENESS BUT THAT ASSOCIATED
LEARNING STILL DRIVES THEM.
ANOTHER IS OPERANT CONDITIONING
WHERE WE'RE MANIPULATING
BEHAVIOR BY USING REWARDS OR
PUNISHMENT AND THAT PROCESS IS
VERY POWERFUL.
I'M SURE YOU ALL KNOW THAT FROM
THE WORLD WIDE EXPERIMENT IN
TEXTING.
WE GET THAT DOPAMINE HIT AND
WHAT ARE WE DOING ALL THE TIME?
WE'RE WATCHING OUR PHONES.
SO THESE BEGIN TO PAIR WITH THE
INDIVIDUAL COMPONENTS OF
EXPERIENCE.
IF YOU THINK OF IT AS A HABIT
LOOP YOU MAY HAVE BEEN IN TUNE
WITH THE SCIENCE I'M SHOWING
THAT QUEUE LEADS TO A SEQUENCE,
LEADS TO A REWARD AND THAT
REWARDS THE BEHAVIOR AND WE
DEVELOP THESE NEURAL CIRCUITS
AND THIS CAN BE FOR BEHAVIORS
BUT CAN ALSO BE FOR PERCEPTUAL
EXPERIENCES.
IT CAN BE FOR EMOTIONAL
EXPERIENCES AND FOR HABITS OF
THOUGHT.
I WANT TO TALK A LITTLE BIT
ABOUT HOW THIS HAPPENS WITH
PROCESSING.
WE HAVE TWO PROCESSING SYSTEMS
AT LEAST.
TWO THAT WE KNOW A LOT ABOUT.
ONE IS THE BOTTOM-UP THROUGH
VISORO SENSORY CUES AND SOUND
AND SMELL AND MOVEMENT OF THE
BODY AND ALL THE INFORMATION
THAT COMES IN THE SENSES, RUNS
UP THE DORSAL HARNS THROUGH THE
SPINE AND THE SPINAL THALAMIC
TRACKS INTO THE PRIMARY CORTEX,
ASSOCIATIONAL CORTEX AND THERE'S
NEURAL TRACKS THAT ASSOCIATE IT
WITH CUES OR AN EMOTIONAL
EXPERIENCE.
WE TEND TO HAVE ASSOCIATIONAL
LEARNING HERE.
SOME IS BOTTOM-UP AND SOME IS
TOP-DOWN.
THE BOTTOM-UP IS THE PERCEPTUAL
SENSORY PROCESSING SYSTEM AND
THE TOP-DOWN SYSTEM AND IS
HIGHLY PREFERRED IN WESTERN
EDUCATION SO WE TEND TO FOCUS
MORE ON IT.
IT'S THE WAY WE ORGANIZE
INFORMATION AND LABEL EXPERIENCE
AND ACTUALLY CREATE MEANING OUT
OF WHATEVER IT IS WE'RE
EXPERIENCING.
SO THESE SYSTEMS WORK TOGETHER
TO CREATE EXPERIENCES AND PAIN
AS WE KNOW IS AN EXPERIENCE
WHERE SENSORY INFORMATION FROM
THE BOUGTBOTTOM-UP SYSTEMS IS RD
TO PHYSIOLOGIC AND BEHAVIORAL
RESPONSES TO THOSE.
SO IT'S A PSYCHO PHYSIOLOGICAL
PHENOMENON WHICH IS A DEFINITION
I VERY MUCH LIKE.
IT IS TIME THEN FOR WHEN WE GET
INTO SYSTEMS LIKE THIS TO BACK
UP AND SEE IF WE CAN BEGIN TO
UNPACK THAT BAIT BALL.
THERE NEEDS TO BE SOMETHING TO
PAUSE BETWEEN THE QUEUE AND
SEQUENCE AND THAT PAUSE CAN BE
CREATED WITH COGNITIVE
BEHAVIORAL THERAPY AND SELF
MONITORING AND INQUIRY AND
CLINICAL HYPNOSIS AND
MINDFULNESS MEDITATION AND I'LL
USE MINDFULNESS AND MEDITATION
TO TALK ABOUT IT.
I WANT TO BE CLEAR THERE MAY BE
A RELAXATION THERE'S A LOVELY
REACTION AND CAN HELP SOOTH THE
NERVOUS SYSTEM AND MAKE OUR
LEARNING STRATEGIES ACCESSIBLE
AND HELP US.
RELAXATION IS FABULOUS BUT I'M
TALKING ABOUT USING MINDFULNESS
AS A WAY TO DISENTANGLE
EXPERIENCE AND SEE THE WHOLE
BAIT BALL AND ZOOM INTO THE
LITTLE TINY FISH OF EXPERIENCE.
TO DO THIS FOR THE PURPOSE OF
ALLOWING PEOPLE TO REGULATE
THEIR HABITUAL REACTIONS AND
BEGIN TO REPATTERN THEIR
EXPERIENCE.
MINDFULNESS IS THE AWARENESS OF
PAYING ATTENTION TO A PARTICULAR
WAY AND PAYING ATTENTION WITH
INTENTION.
IT'S IN THIS PARTICULAR MOMENT
AND WITHOUT JUDGMENT AND
JUDGMENT HERE IS NOT SO MUCH
ABOUT CRITICISM OR NOT BUT IT'S
ACTUALLY ABOUT WITHOUT
ELABORATION.
SO IT'S BEGINNING TO LEARN
DIRECT SENSORY EXPERIENCE AND
HOW WE TAKE THAT SENSORY
EXPERIENCE AND THEN INTERPRET IT
OR ELABORATE OUT IN TO BEGIN TO
CREATE OUR NARRATIVE.
THAT'S OUR POINT OF INTERVENTION
THAT BECOMES KEY IN CHRONIC
PAIN.
IF WE GO BACK TO OUR WHEEL SELF
THE CORE SELF OR WHEEL OF SELF
IS SURROUNDED BY COMPASSIONATE
AWARENESS BEFORE GOING TO
DOMAINS THROUGH WHICH PEOPLE CAN
OPTIMIZE THEIR HEALTH AND WELL
BEING AND MANAGE PAIN.
I WANT TO BE CLEAR THIS IS NOT
JUST ANY AWARENESS BUT THIS IS
COMPASSIONATE AWARENESS AND
COMES WITH A KIND OF KINDNESS
AND CURIOSITY.
REALLY IMPORTANT FOR LEARNING
THAT WE'RE WILLING TO TAKE RISKS
AND TAKE ON NEW PATTERNS AND
DROP DEFENSES IN ORDER TO DO
THAT WE HAVE TO KNOW IT'S A SAFE
PLACE TO DO IT.
PEOPLE NEED TO LEARN
COMPASSIONATE APPROACHES TO
CHANGE THEIR PATTERNING.
THIS IS A MODEL OF HOW
MINDFULNESS CAN HELP US UNPACK
EXPERIENCE.
THE TOP LAYER IS THE CHATTERING
MIND.
WHEN YOU FIRST BEGIN TO TRAIN IN
SOME PROCESS OF TURNING INTO
YOU'RE INTERNAL EXPERIENCE YOU
BEGIN TO SEE WE HAVE A RUNNING
NARRATIVE ALL THE TIME.
RIGHT NOW I'M FOCUSSED ON WHAT
I'M SAYING BUT I STILL HAVE THIS
LIKE DON'T FORGET, RUTH, IN TWO
SLIDES I WANT TO SAY X AND I
WONDER IF THERE'S GOING TO BE
ENOUGH TIME TO DO AN
EXPERIENTIAL EXERCISE IN THE END
AND I HAVE TO REMEMBER TO CALL
MY SISTER.
I HAVE THIS NON SEBS GOING ON.
AND WHEN YOU'RE PRACTICING
TRAINING IN MINDFULNESS AND
MEDITATION WHAT YOU'RE DOING IS
ALLOWING THE CHATTERING MIND TO
SETTLE SO YOU BEGIN TO SEE YOU
SEE THE SINGLE THOUGHT OR RISE
AND FALL OF AN EMOTION OR A
SPECIFIC SENSATION WHICH MAY BE
AND OFTEN IS TRANSIENT BUT NOT
ALWAYS.
OR FEEL A BEHAVIORAL URGE LIKE
SWALLOW OR MOVE AND WHAT HAPPENS
IF I DO OR DON'T.
AS YOU BEGIN TO ACCESS THE MICRO
EXPERIENCE YOU BEGIN TO SEE
THEIR TRANSIENT NATURE AND BEGIN
TO HAVE MORE CHOICE IN WHICH
PARTS YOU WANT TO ATTEND TO.
IF YOU ACCESS THOSE PIECES AND
ALLOW THEM TO SETTLE MORE YOU
OPEN TO A BROADER EXPERIENCE
WHICH IN THIS MODEL IS CALLED
WISE MIND.
IN SOME WE CALL IT TRUE SELF OR
CORE SELF AND OTHER MODELS
SPIRITUAL AND PHILOSOPHICAL
MODELS HAVE COLLECTIVE
UNCONSC
UNCONSCIOUS.
BOTH ARE ACTIVE.
HAVE YOU INFORMATION COMING UP
AND ASSOCIATIONS AND HAVE THE
DIRECT COGNITIVE CONTROL COMING
DOWN.
AND ONE OF THE REASONS I LIKE
MINDFULNESS IS BECAUSE TRAINING
IN MINDFULNESS ACTUALLY GIVES US
ACCESS TO BOTH OF THESE
PROCESSING SYSTEMS.
WHAT WE KNOW IS THAT THE
INDIVIDUAL MECHANISMS THAT
APPEAR TO BE AT PLAY ARE
DEPENDENT ON A TON OF FACTORS.
THEY'RE DEPENDENT ON THE
EXPERIENCE LEVEL OF THE
PRACTITIONER AND WHICH PRACTICE
THE PERSON'S ENGAGING IN, ON THE
LENGTH OF THEIR TRAINING,
ETCETERA.
FOR EXAMPLE, WE KNOW NOVICE
MEDITATORS DEMONSTRATE A SHIFT
IN THEIR ORIENTING FUNCTION
WITHIN WORKING MEMORY A
BOTTOM-UP FUNCTION.
AND WE DON'T SEE THAT IN MORE
EXPERIENCED PRACTITIONERS.
WE SEE IN EXPERIENCED
PRACTITIONERS ABILITY IN
TRAINING AND WE'RE BEGINNING TO
UNDERSTAND FROM BOTTOM-UP AS
WELL AS FROM TOP-DOWN HOW IT IS
PEOPLE ACCESS COMPONENTS OF
EXPERIENCE.
ONE THAT IS GETTING MULTIPLE
INTERVENTIONS IS WHAT
MINDFULNESS BASED COGNITIVE
THERAPY CALLED DE CENTERING OR
ACT CALLED DIFFUSING OR
MINDFULNESS TAKES THE STANCE OF
THE CURIOUS OBSERVANCE WHO IS
WATCHING WITH EXPERIENCE IT'S
THE PROCESS OF STEPPING BACK AND
DEVELOP METACOGNITIVE AWARENESS
WHERE YOU SEE HOW YOUR OWN MIND
WORKS.
YOU BEGIN TO SEE HOW IT IS THAT
YOU CREATE THE EXPERIENCE YOU
CREATE FOR YOURSELF.
WE KNOW DECENTERING APPEARS TO
BE CENTRAL IN THE NEUROCENTRIC
MODELS IN WORKING WIN CHRONIC
PAIN AND DEPRESSION AND ANXIETY.
THIS IS THE WORK OF SEGAL AND
RELAPSE IN DEPRESSION IS
TRIGGERING TO THE NEGATIVE
THINKING PATTERNS THAT HAVE BEEN
ASSOCIATED WITH THE INDUCEMENT
OF THE SAD MOOD.
THEY COULD EXPERIMENTALLY INDUCE
A SAD MOOD AND SEE THE THINKING
PATTERNS COME ONLINE.
THEY FOUND WHEN PEOPLE PRACTICE
THE SELF-REGULATION SKILLS THAT
WERE TRAINED AT NBCT THERE WAS
NOT A DIRECT RELATIONSHIP TO THE
DEGREE TO WHICH PEOPLE RELAPSED
BUT THERE WAS A MEDIATED
RELATIONSHIP IF THEY PRACTICED
LED TO THE AMOUNT OF LEARNING
THEY WERE DOING IN TERMS OF HOW
TO TAKE THAT OBSERVER STANCE.
THAT IS WHAT ACTUALLY PREDICTED
THE RELAPSE OF DEPRESSION.
ANOTHER MODEL IS THE WORK OF
ERIC GARLAND AND THE ATTENTIONAL
CONTROL THE INHIBITORY CONTROL
AND METACOGNITION BASED ON WHERE
YOU PUT YOUR ATTENTION AND THE
ABILITY TO STEP BACK AND WATCH,
THAT LEADS TO A SHIFT FROM
AFFECTIVE PROCESSING THAT IS
PREDOMINANT IN CHRONIC PAIN AND
ALSO IN THOSE PEOPLE THAT ARE
STRUGGLING WITH OPIOID USE AND
MOVING FROM THAT AFFECTIVE
PROCESSING, DECOUPLING IT,
SEPARATING IT FROM SENSORY
PROCESSING IS ONE OF THE MAIN
MECHANISMS THROUGH WHICH HIS
APPROACH THE MINDFULNESS
RECOVERY ENHANCEMENT PROGRAM
SEEMS TO WORK.
THE PROCESS OF STEPPING BACK AND
THEN WE SEE A SEPARATING OF THE
SENSORY PIECE AND THERE'S AN
AMPLIFICATION OF THE SENSORY
PIECE AND DISCONNECTED OR
DAMPENED IN TERMS OF ITS LINKING
TO THE EMOTIONAL PIECE.
THERE'S OTHER PIECES THAT HAVE
TO DO WITH SAVORING AND BUILDING
UP THE EXPERIENCE OF PLEASURE
BUT WON'T GET INTO THAT FOR
RIGHT NOW.
YOU MAY HAVE ALSO HEARD OF THE
WORK AND I DIDN'T HEAR LAURA'S
TALK YESTERDAY BUT MY GUESS IS
WHEN YOU LEARNED ABOUT THE
VENTRAL MEDIAL PREFRONTAL CORTEX
MAYBE SOME OF THIS WAS MENTIONED
BUT CHRONIC PAIN THROUGH THE
DISTRIBUTED NETWORKS ARE
DEACTIVATED THROUGH MINDFULNESS
TRAINING SUCH AS THE
VENTROMEDIAL PREFONT TAL CORTEX
AND MINDFULNESS IS HELPING
PEOPLE SEPARATE OUT COMPONENTS
OF EXPERIENCE AND SEPARATE OUT
THE DIRECT EXPERIENCE AND DATA,
IF YOU WILL, FROM THE PERSON'S
STORY OR SELF-REFERENTIAL
NARRATIVE OF THE STORY.
THOSE ARE SOME NEURO SCIENTIFIC
METHODS OUT THERE AND A WANT TO
MENTION WHAT PATIENT HAVE TOLD
US.
BE AND THIS IS PART OF A WEIGHT
LOSS CONSTRUCT AND HERE'S WHAT
PATIENTS TELL US AND THE GUIDING
QUESTION IN THE QUALITATIVE
STUDY WAS WHAT WAS THE INTERNAL
EXPERIENCE OF MINDFULNESS
PARTICIPANTS TO CREATE CHANGES
IN BEHAVIOR.
WHAT WE FOUND WAS THEY FOCUSSED
THEY REPORTED TO US THESE EXACT
SAME THING.
THEY LEARNED TO ATTEND TO FOCUS
ON PARTICULAR CUES, SOCIAL CUES,
CONTEXTUAL CUES AND LEARNED TO
FOCUS ON SENSATIONAL CUES
WITHOUT THE STORY OF THE
SENSATION.
THE ACTUAL THINKING PROCESS AND
DECISION MAKING PROCESS THAT
THEY RECOGNIZED THROUGH THEIR
MINDFULNESS MEDITATION PRACTICE
HAS SEVERAL KEY THINGS.
SO BEING ABLE TO TEASE A PART A
CUE, A SENSATION OR AN EMOTION
FROM A BEHAVIOR PATTERN WAS
IMPORTANT AND THAT PROCESS
ALLOWED THEM TO SEE OPTIONS THAT
HAD BEEN THERE BUT THEY HADN'T
SEEN THEM.
OR TO CREATE OPTIONS THAT WERE
ACTUALLY NOT THERE BEFORE AND
THEN THEY UTILIZED THOSE OPTIONS
TO DO THINGS LIKE PLAN OR ENGAGE
IN EXERCISE OR CREATE A MEAL
PLAN.
THE INCREASING ABILITY TO
IDENTIFY WHAT THEIR CORE NEEDS
WERE.
TO IDENTIFY AND ACT ON WHAT THEY
MOST NEEDED AND TO ENGAGE THEIR
CONSCIOUSLY CHOSEN VALUES.
THEY TALKED ABOUT A GROWING
AWARENESS OF THEIR ROLE IN
CREATING BEHAVIOR.
THEIR OWN RESPONSIBILITY IN
THEIR KIND OF CONSTRUCTIVIST
EXPERIENCE.
NOW, I WANT TO BE CLEAR THAT I'M
NOT SUGGESTING THAT PEOPLE ARE
INTENTIONALLY CREATING DIFFICULT
PATTERNS OF BEHAVIOR AND
UNCOMFORTABLE AND MISERABLE
EXPERIENCES.
THIS HAPPENS OUTSIDE OF
AWARENESS.
WHAT IS USEFUL AND IMPORTANT IN
UNDERSTANDING IN HOW TO ACCESS
THE WHOLE SELF BEFORE THE WHOLE
PATTERNS GET BUILT ON TO IT IS
BY TAKING A PART THOSE
EXPERIENCES AND SEEING WHERE
THEY'RE ACTUALLY IS CHOICE IN
THE BEHAVIOR.
SO THANK YOU VERY MUCH FOR YOUR
TIME.
I'M VERY READY TO HEAR YOUR
COMMENTS AND YOUR QUESTIONS.
>> THANK YOU.
WE HAVE MANY QUESTIONS AND WE'LL
TAKE A FEW FROM THE AUDIENCE.
WE'LL START WITH A QUESTION, CAN
YOU GIVE AN EXAMPLE OF MUCH WHAT
A RESEARCHER MAY SEE IN A
PATIENT WITH CHRONIC PAIN.
>> THERE'S A LOT OF HABITS
FORMED.
THE TYPICAL ONES HAVE TO DO WITH
DEVELOPING A CONDITION FEAR OF
MOVEMENT BECAUSE MOVEMENT
EXACERBATES THE PAIN AND IT
HURTS PEOPLE THEN LEARN TO BE
MORE STILL.
IN THE MOMENT I MAY FEEL BETTER
BUT OVER TIME THE MUSCLES
TIGHTEN AND THE MEI -- MYOFACIA
GETS STUCK AND THERE'S LOTS OF
EXAMPL
EXAMPLES.
THERE'S EMOTIONAL AND THOUGHT
CONDITIONING.
FEAR-BASED LACK OF MOVEMENT IS
ONE ANOTHER IS PEOPLE OVER DO OR
UNDER DO.
COMING OUT OF AN INTENTION FLARE
THEY MAY HAVE A DAY WHERE THEY
FEEL GOOD AND DO AND DO AND OVER
DO AND BACK IN BED THREE DAYS.
THE CONDITIONS OF WHEN I'M
REALLY HURTING AND I CAN'T DO
ANYTHING, THE DRIVE TO GET LOTS
OF THINGS DONE RISES AND WHEN I
HAVE A BRIEF MOMENT OVER DOING
AND NEEDING TO FIGURE OUT A MORE
APPROPRIATE PACING GIVEN THE
CONDITION OR EXPERIENCE I'M
HAVING IN A PARTICULAR MOMENT.
>> HOW DO YOU HELP PATIENTS
ENGAGE SO THEY DON'T FEEL OVER
WORKED AND DECLINE.
>> GREAT QUESTION.
SO ONE THING I WILL SAY ABOUT
MINDFULNESS IS YOU HAVE TO BE
REGULATED ENOUGH THAT YOU CAN
ACTUALLY SIT STILL OR DO SOME
KIND OF SOOTHING MINDFUL MOMENT.
I WOULDN'T START WITH
MINDFULNESS RIGHT OFF THE BAT.
I WOULD ASSESS THE DEGREE TO
WHICH A PERSON WAS OPEN TO
ACTUALLY LEARNING THAT.
WHEN THE PAIN SIGNAL IS TOO LOUD
OR THE PERSON YET DOESN'T HAVE
THE EDUCATION OR INFORMATION
ABOUT HOW THIS IS IMPORTANT,
IT'S USEFUL TO START BY DOING
SOME EDUCATION.
ONE OF THE REASONS I LIKE THE
WHEEL IS YOU CAN START WHERE THE
PERSON'S MOST INTERESTED.
WHATEVER IT IS THEY'RE MOST
INTERESTED IN, YOU CAN INVITE
THEM TO START SELF-MONITOR.
SAY THEY'RE INTERESTED IN
IMPROVING THEIR SLEEP.
YOU CAN START TO HAVE THEM
SELF-MONITOR THE TIME THEY HAVE
IN BED AND RECOGNIZE THEIR OWN
PATTERNS OVER TIME.
ONCE HAVE YOU A LITTLE
SELF-MONITORING GOING, YOU CAN
INVITE THEM TO TRY MINDFULNESS.
WE HAVE A PROGRAM AT OUR CENTER
CALLED MINDFULNESS SKILLS WHICH
IS A GROUP-BASED PROGRAM WHERE
WE START TO HELP PEOPLE
RECOGNIZE, GROW THEIR AWARENESS
AND RECOGNIZE SOME OF THE LINKS.
THAT KIND OF A PROGRAM CAN BE
HELPFUL.
IT'S TRITRAIT TED AND BEGINNING
SMALL ASSOCIATION LEADING TIE
GREATER -- TO A GREATER
WILLINGNESS.
>> HAVE YOU FOUND WHAT IS
SUCCESSFUL IN COMPASSIONATE
AWARENESS.
>> I LOVE INTERNAL FAMILY
SYMPTOMS WORK.
I DIDN'T EVEN GET THAT IN HERE.
FOR THOSE NOT AWARE, WE HAVE
PARTS OF OURSELVES AND WHAT YOU
DO IN INTERNAL FAMILY SYSTEMS.
THEY'RE IN A HYPNOTIC DEEPLY
ABSORBED STATE WHERE YOU WORK ON
PARTS OF SELF AND WORK ON THE
INFORMATION AND FUNCTION OF THAT
PART AND IT'S VERY MUCH A
WELCOMING AND SO THERE'S IT'S
TAKING A PART OUR HISTORICAL
CRITICISM AND BEGINNING TO
UNDERSTAND AND APPRECIATE THE
ROLE IT'S PLAYING.
I THINKIFS, INTERNAL FAMILY
SYSTEMS IS VERY MUCH IN THE
MODEL AS WELL.
>> WHAT ROLE DO YOU SEE IN THE
IMPLEMENTATION OF WHOLE HEALTH
STUDIES.
>> I THINK THERE'S MANY
DIFFERENT POSSIBILITIES HERE.
ONE IS TO BE ON ALERT, IF YOU
WILL, HOLDING THE SPACE FOR
PATIENTS SO THAT THEY CAN BEGIN
TO SHARE PIECES MUCH THEIR
ENVIRONMENT.
EXCUSE ME, EXPERIENCE.
ONE OF THE THING THE NURSES DO
REALLY WELL AND I'M TALKING
ABOUT RNs NOT TALKING ABOUT AN
NP BUT AN RN, THEY CREATE THE
ENVIRONMENT WHERE THE PATIENT
GETS THAT SENSE OF ACCEPTANCE
AND THAT YOU'RE OKAY AND WE
DON'T THINK YOU'RE MAKING THIS
UP.
PEOPLE WITH CHRONIC PAIN
EXPERIENCE SO MUCH DISCOUNTING
AND NEGATIVE STIGMA AND
UNDERSTANDABLY PERCEIVED.
AND CREATING A SPACE WHEREIN THE
PATIENT IS STARTING TO SETTLE
AND THEY'RE HELPING SETTLE THE
PERSON'S NERVOUS SYSTEM FROM THE
MOMENT THEY'RE WALKING DOWN THE
HALL BEFORE THEY GET SETTLED
INTO AN OFFICE.
>> THERE'S A COUPLE QUESTIONS
AND THEY SEEM TO WORK BETTER IN
PATIENTS WITH MILD OR MODERATE
PAIN.
THE QUESTION IS WHAT ABOUT
PEOPLE SEVER CHRONIC PAIN, HOW
DO THEY HAVE THE PRESENTATION OF
MIND TO HAVE MINDFULNESS IN SUCH
PAIN?
>> I WON'T SAY EVERYBODY CAN.
I DON'T THINK THAT IS THE CASE.
AND WHILE I FIND MINDFULNESS
VERY POWERFUL IN TERMS OF MY OWN
WORK AND WORK WITH PATIENTS.
IT'S NOT FOR EVERYBODY.
IF THE PAIN IS REALLY INTENSE,
CLINICAL HYPNOSIS, IN MY
EXPERIENCE, CAN HELP MORE
BECAUSE YOU'RN WORK A
DISSOCIATION STRATEGY AND YOU'RE
WORKING ON ASSOCIATION STRATEGY
BUT ASSOCIATION TO OTHER THINGS.
BUT YOU'RE TRYING TO CULTIVATE
WHAT PEOPLE CARE ABOUT AND MOVE
IT TO THE FOREGROUND AND PAIN TO
THE BACKGROUND BUT FROM A BIGGER
PICTURE.
HAVE YOU THIS MUCH PRECIOUS
ENERGY A PERSON WITH CHRONIC
PAIN THIS MUCH PRECIOUS ENERGY,
WHAT DO YOU WANT TO DO WITH THAT
AND BEGIN SOOTHING THE NERVOUS
SYSTEM IS REALLY IMPORTANT.
CERTAINLY THERE'S A PLACE FOR
ANALGESIA.
NO DOUBT ABOUT IT.
FOR MIGRAINE IT'S MORE THE
HORMONES TO QUELL THE DEGREE BUT
IT'S THE PATTERNS THAT
SIMULTANEOUSLY NEED TO BE WORKED
ON.
OF ALL THE BRIGHT COLORED AREAS
ON OUR WHEEL OF HEALTH TO
SUPPORT THE CREATION OF A
CONTEXT AND ENVIRONMENT WHERE
PEOPLE CAN THEN BUILD HEALTH AT
THE SAME TIME THEY'RE TRYING TO
LEARN TO MANAGE THIS INTENSE
NOCICEPTIVE STIMULI.
>> AND ANOTHER QUESTION IS
PEDIATRIC VERSUS ADULT
STRATEGIES ESPECIALLY WITH
MINDFULNESS.
THE QUESTION IS HOW CON THE
CONSTRUCT BE APPLIED IN THE
PEDIATRIC CONTEXT OF THIS AND
HOW DOES HUMAN DEVELOPMENT HELP
THE APPROACH WITH CHILDREN AND
YOUNG ADOLESCENTS.
AND A RELATED QUESTION, WHEN
WILL MINDFULNESS TRAINING BE
IMPLEMENTED IN ELEMENTARY SCHOOL
CURRICULUM.
>> WOW, I WISH I KNEW THAT BUT I
DON'T.
IT IS IMPLEMENTED SOME PLACES
EVEN IN ELEMENTARY SCHOOL
TRAINING.
I DON'T WORK WITH CHILDREN
OUTSIDE OF MY FAMILY AND FROM
READING AND TALKING TO
COLLEAGUES THAT DO WORK IN THIS
AREA, THERE'S AN INNATE ABILITY
THAT KIDS DO UNDERSTAND BUT IT
HAS TO BE MORE FUN IN TERMS OF
BEING ABLE TO TURN UP OR TURN
DOWN ASPECTS OF THEIR SENSORY
EXPERIENCE.
WORKING THROUGH BREATHING, FOR
EXAMPLE.
THERE ARE ALSO SOME VERY
SPECIFIC MINDFULNESS BASED
PROGRAMS LIKE FOR ADOLESCENCE
AND ONE DEVELOPED FOR
COLLEGE-AGE STUDENTS UTILIZED
SUCCESSFULLY IN ADOLESCENTS AS
WELL.
I KNOW AND THERE'S DIFFERENT
PRACTICES.
I CAN'T TELL YOU MORE SPECIFIC
THAT.
YEAH, THAT'S ALL I GOT.
>> THIS IS INTERESTING AND
HOPEFULLY WE'LL HAVE SOME
PEDIATRIC EXPERTS DURING THE
NETWORKING SESSION LATER TODAY
TO FURTHER DISCUSS THE TOPIC.
AS A LAST QUESTION BEFORE WE GO
TO THE NEXT SESSION, IF
CLINICIANS UNDERSTAND DE
CONSTRUCTING AND CAN HELP PEOPLE
AND WHAT KIND OF TRAINING AND
EDUCATION BE PROVIDED FOR
THERAPY?
>> THAT'S A GREAT QUESTION.
I HAVEN'T THOUGHT THAT THROUGH.
OFF THE TOP OF MY HEAD I WOULD
SAY THAT THE CONTEXT IN THE
TRAINING IS REALLY ABOUT CREATE
SAFE CONTEXT WHERE YOU ASK
PEOPLE THINGS AND LET THEM MAKE
THEIR OWN -- COME TO THEIR OWN
INSIGHT ABOUT IT.
FOR EXAMPLE, WHEN YOU HEAR A
PATIENT'S AUTOMATED STORY,
OFFERING COMPASSION AND SOME
KIND OF QUESTION THAT WOULD
INVITE GREATER AWARENESS TO THE
WAY THEIR STORIES BECOME
AUTOMOTIZED BECAUSE THE STORIES
GET US STRUCK.
I'M BIG ON EXPERIENTIAL TRAINING
IS IMPORTANT AND WITH CHRONIC
PAIN PATIENTS A LOT OF
COMPASSION AND STRENGTHENING
THOSE KINDS OF SKILLS BECOMES
VERY IMPORTANT.
SORRY, I CAN'T BE MORE TANGIBLE
FOR YOU.
>> THANK YOU.
THANK YOU SO MUCH.
THANK YOU SO MUCH FOR YOUR
AROUND
AROUNDSES -- AND
I'D LIKE TO INVITE TO YOU COME
TO THE NETWORKING SESSION.
AND NOW THE FLOOR IS LEFT TO
LEAH.
>> THANK YOU, INNA AND
DR. WOLEVER FOR THE FASCINATING
TALK AND WONDERFUL CONVERSATION.
THE TOPIC IS SO IMPORTANT AND WE
HOPE EVERYONE CAN CONTINUE THE
CONVERSATION.
NOW, IT'S MY PLEASURE TO
INTRODUCE OUR NEXT SPEAKER,
LIEUTENANT COLONEL CONNIE SNYDER
A RETIRED INTELLIGENCE OFFICER
WHO SERVED ON ACTIVE DUTY AND
AIR FORCE RESERVE AND THE WIFE
AN ACTIVE DUTY AIR FORCE OFFICER
SHE'S BEEN MARRIED TO FOR 21
YEARS AND THEY HAVE A SON,
DAUGHTER AND GRANDDAUGHTER.
BESIDES HAVING PROUDLY WORN THE
UNIFORM 24 YEARS SHE'S BEEN A
HOME SCHOOLER AND VOLUNTEERED AS
A PATIENT ADVOCATE FOR MILITARY
FAMILIES IN THE DOD, FAMILY
MEMBER PROGRAM AND MENTOR IN THE
KEY SPOUSE PROGRAM.
AND THE REASON KONNIE WILL SPEAK
TODAY IS SHE'S A SPEAKER.
SHE OVERCAME A MULTITUDE OF
INJURIES AND TRAUMAS AND WHAT
STARTED AS CHRONIC CHEST PAIN
AND COMPOUNDED BY MULTIPLE
SURGERIES AND A CAR ACCIDENT AND
HAS CHEST PAIN, BACK PAIN, JOINT
PAIN, SPORADIC PARALYSIS AND 645
APPOINTMENTS AND PROVIDERS LATER
STILL HAS NO DIAGNOSIS.
SHE HOPES HER JOURNEY WILL SHED
LIGHT ON THE IMPACT ON NOT JUST
THE PATIENT BUT ALL AROUND THE
PATIENT.
THANK YOU SO MUCH, KONNIE, FOR
JOINING US AND OVER TO YOU.
>> THANK YOU FOR THE
OPPORTUNITY.
I'VE BEEN LISTENING TO THE
PANELISTS.
IT'S HUMBLING TO BE IN THE
PRESENCE OF SO MANY AMAZING
PEOPLE WITH POWERFUL STUDIES
THAT WILL BENEFIT SO MANY.
I CAN'T THANK YOU ENOUGH TO
ENCOMPASS MY BRIEFING WHICH IS
THAT OF THE WHOLE PERSON.
IF I CAN SUMMARIZE ONE ASPECT
BEEN THE MOST CHALLENGING DURING
MY MEDICAL JOURNEY IS MY ISSUES
HAVE BEEN VIEWED AS A SEPARATE
FISH INSTEAD OF HOW THEY
INTERRELATE.
THANK YOU AGAIN FOR EVERYTHING
YOU ARE DOING TO HELP PATIENTS
SUCH AS MYSELF.
MOST ITEMS YOU ALREADY HEARD
BUT I HAVE A SYNOPSIS OF THE
ITEMS OF WHO I AM AS A PERSON
AND ACUTE VERSUS CHRONIC PAIN.
SOME OF MY MANY COMORBIDITIES
AND THE IMPACT OF CHRONIC PAIN
ON MY LIFE AND MANY TECHNIQUES
I'VE TRIED, CONVENTIONAL AND
UNCONVENTIONAL AND WISH LIST FOR
OTHER PAIN PATIENTS AND FINALLY
MY PROPOSAL WHAT WOULD BE A
REALLY GREAT WHOLE-PERSON HEALTH
CARE FORMULA.
MOST OF THESE ASPECTS YOU
ALREADY HEARD IN MY INTRODUCTION
BUT I WANT TO EMPHASIZE THEM
HERE AGAIN BECAUSE IN THE LAST
EIGHT YEARS AS I'VE BEEN ON MY
CHRONIC PAIN JOURNEY, IT'S
FASCINATING TO ME HOW READILY
PEOPLE WILL LOOK ONLY AT ONE
GIVEN COMPONENT OF A PERSON.
NOT NECESSARILY WHO THE PERSON
IS.
A LOT OF THAT IS DUE TO THE FACT
THAT OUR CLINICIANS ARE OVER
TASKED AND UNDER MANNED AND MAY
ONLY HAVE 10 MINUTES WITH A
GIVEN PATIENT.
MANY GENUINELY WANT TO HELP A
PATIENT BUT DON'T HAVE THE TIME
OR THE RESOURCES AVAILABLE TO DO
SO.
AND SO OFTEN TIMES I DON'T HAVE
THE LUXURY OF ASKING THE
QUESTIONS THAT WILL FORM THE
WHOLE PERSON UNDERSTANDING OF A
GIVEN PATIENT.
WHAT I'VE TRIED TO DO AND ONE OF
MY COPING MECHANISMS HAS BEEN TO
TRY AND DEFINE A NARRATIVE
SPECIFICALLY THAT MY PAIN IS NOT
FOR NOTHING.
HOW CAN I TAKE MY EXPERIENCE AND
UTILIZE IT AND TRY TO HELP
OTHERS.
THAT'S IS WHY WHEN I FOUND
MYSELF IN THE EXCEPTIONAL MEMBER
PROGRAM AS A MILITARY MEMBER AND
THE SPOUSE OF A MILITARY MEMBER,
MY HUSBAND'S ASSIGNMENTS ARE NOW
IMPACTED BECAUSE OF MY MANY
MEDICAL LIMITATIONS AND CERTAIN
SPECIALISTS I MUST HAVE ACCESS
TO AT ALL TIMES.
I LEARNED EIGHT OF LESSONS WHEN
I WAS FIRST INTRODUCED TO THE
PROGRAM AND TRIED TO APPLY THEM
TO HELP OTHER FAMILIES IN THE
PROGRAM.
SIMILARLY, BECAUSE I'M IN A
UNIQUE SITUATION AS HAVING BEEN
I RECENTLY RETIRED HAVING WORN
THE UNIFORM AND HAVING A SPOUSE
OF ONE WHO WEARS THE UNIFORM
I'VE TRIED TO BE A MENTOR TO
HELP AIRMEN AND THEIR FAMILIES
AS THEY NEGOTIATE THE UNIQUE
CHALLENGES OF MILITARY LIFE.
AS ALREADY MENTIONED AND WHY I'M
HERE I'M ALSO A CHRONIC PAIN
SUFFERER AND A MEDICAL ENIGMA.
I COULD SPEAK FOR HOURS ABOUT
THE RATHER TUMULTIOUOUS JOURNEY
BUT I KNOW THE DIFFERENCE
BETWEEN ACUTE AND CHRONIC PAIN.
BURY -- I BEFORE GRADUATING I
HAD UNDER GONE MANY SURGERIES
INCLUDING ENDO MEET ROSE IS AND
AND AN UNDERWENT OR SUSTAIN A
MINIMUM OF 21 DIFFERENT
INJURY/TRAUMAS ING FROM THE
AFOREMENTIONED TO CHILD BIRTH,
C-SECTION AND EVEN A BOUT OF
PERI CARDITIS AND WE WERE ABLE
TO IDENTIFY WHAT THE CAUSAL
ISSUE WAS AND TREAT IT AND MOVE
ON AND IN EVERY CASE THERE WAS A
FINISH LINE.
THEN 2014 HAPPENED.
I WAS AT THE AIR FORCE BASE IN
LOUISIANA ON MY ACTIVE DUTY
ORDERS AND MY HUSBAND WAS IN
CALIFORNIA AND THAT'S WHERE OUR
FAMILY WAS STATIONED AND
COMMUTED TO MY AIR FORCE BASE.
I HAD FLOWN FROM MONTEREY,
CALIFORNIA AND DRIVEN TO
LOUISIANA AND IT WAS THE LAST
DAY OF DUTY I LIFTED WEIGHTS AND
GONE RUNNING THAT MORNING.
EVERYTHING WAS THE SAME AS IT
TYPICALLY WAS UNTIL I WAS AT
WORK I HAD A SUDDEN ONSET OF
CHEST PAIN.
IT MIMICKED MY 2009 BOUGHT OF
PERICARDITIS EXCEPT I ALSO LOST
FEELING IN MY LEFT ARM AND NECK
AND JAW.
RATHER CONCERNING SO I WENT TO
URGENT CARE, WENT TO THE E.R.
THEY RULED OUT HEART ATTACK AND
DISMISSED ME.
I WAS BY MYSELF IN LOUISIANA,
NEW UNIT, NO SUPPORT SYSTEM.
MY HUSBAND BOUGHT A ONE-WAY
TICKET FROM CALIFORNIA TO
LOUISIANA BECAUSE I WAS
INCAPABLE OF DRIVING BACK TO
FLORIDA WHERE THE KIDS WERE.
ALONG THE DRIVE BACK TO FLORIDA
WE LEARNED THAT SUSTAINED
FREQUENCY VIBRATIONS EXACERBATED
THE CONDITION AND CONTACTED A
NURSE AND THEY RECOMMENDED I BE
SEEN IN JACKSONVILLE, FLORIDA.
I SPENT A WEEK CURLED UP IN THE
FETAL CONDITION NEW TO THIS
EXTREME DIFFICULTY BREATHING AND
THEY PRESCRIBED PAIN
MEDICATIONS, DILAUDID AND SAID
GOOD LUCK TO YOU.
SO I SAID I HAVE THREE FLIGHTS
TO TAKE BACK TO MONTEREY.
WILL THAT BE IN ISSUE, THEY SAID
NO.
I MADE IT THROUGH THE FIRST WEEK
AND THE FIRST ASSENT AND I
PASSED OUT AND SINCE THAT DAY
JUNE 20 OF THIS YEAR WILL MARK
EIGHT YEARS.
I HAVE NOT BEEN ABLE TO TAKE A
SINGLE BREATH WITHOUT PAIN.
THE FIRST YEAR I WAS ON
SUPPLEMENTAL OXYGEN BECAUSE
AFTER I KEPT TELLING PEOPLE I'M
HAVING DIFFICULTY BREATHING THEY
IDENTIFIED THE FACT I WAS AT
86%.
WE STILL DON'T KNOW WHY THAT
HAPPENED FOR A YEAR AND A HALF
OR WHAT RESOLVED IT BUT BEGAN
THE LONG JOURNEY AND BECAUSE
WE'RE IN MONTEREY, CALIFORNIA I
WAS SEEING BY CARDIOLOGY IN
STANFORD AND SAW INFECTIOUS
DISEASE AND A MULTITUDE OF
ENTITIES.
WE HAD TO MOVE ON MY HUSBAND'S
ACTIVE DUTY ORDERS AND HAD TO GO
TO WASHINGTON, D.C.
ONCE MOVED AND SINCE THEN WE
HAVE MOVED FOUR DIFFERENT TIMES
SO THIS NUMBER, 625 APPOINTMENTS
IS NO TYPO.
ONCE WE REALIZED IT WOULD NOT BE
A SHORT-TERM BUT LONG-TERM I
STARTED BUILDING SPREAD SHEETS
TRYING TO REDUCE REDUNDANCY IN
EFFORTS AND TESTING TO SAVE TIME
AND FACILITATE COMMUNICATION.
IN THE BEGINNING IT WAS I HADN'T
SEEN ENOUGH DOCTORS NOW IT'S
THAT I'VE SEEN SO MANY YOU'VE
FIGURED IT OUT BY NOW AND IT'S
NOT THE CASE.
WHAT THE CIRCUMSTANCE HAS HAD IN
COMMON IS IT'S A NON LINEAR
PROGRESSION.
YESTERDAY WE TALKED ABOUT THE
FACT AS THE DISJOINTED AND NEED
TO INTEGRATE THE MANY
COMPONENTS.
THAT IS WHAT'S HAPPENING TO ME.
I'VE HAD MORE AND MORE SYMPTOMS
BUT THE BOTTOM LINE IS I HAVE NO
FINISH LINE.
A MARATHON EVEN AN ULTRA
MARATHON STILL HAS A FINISH
LINE.
FOR ME I DON'T KNOW IF OR WHEN
THAT WILL BE.
MY LIST OF COMORBIDITIES IS TO
LONG SO I ONLY PICKED A FEW.
INCESSANT CHEST PAIN AND SKIN
CANCER.
MOST PEOPLE ARE FAMILIAR WITH
SMALL PATCHES OF SKIN.
I HAD A PATCH OF SKIN CANCER ON
THE TOP OF MY SCALP AND THE SKIN
CANCER OCCURRED REGRESSIVELY AND
I NEEDED A SCALP RESECTION THAT
REQUIRED 27 STAPLES ACROSS MY
HEAD.
ONLY THANKS TO A PHENOMENAL
PLASTIC SURGEON YOU DON'T SEE
THE SCAR.
THE CAR ACCIDENT PRIECHZ
PREVIOUSLY
PREVIOUSLY MENTIONED AND THE
IMPACT OF ORAL FACIAL P.D.
I EXPERIENCE THAT ON A REGULAR
BASIS.
WE DON'T UNDERSTAND WHY ALL MY
TEETH ARE CRACKING.
I'VE HAD TO HAVE TWO EXTRACTIONS
FOR REASONS OF YET HAVE NOT BEEN
IDENTIFIED.
ENDOMETRIOSIS I'M ALSO FAMILIAR
WITH AND I'VE HAD A HISTORY OF
MALIGNANT OVARIAN CYSTS.
SO I COULD GO ON ALL DAY ABOUT
THE MANY COMORBIDITIES I HAVE
BUT THE BOTTOM LINE IS I'M
FAMILIAR WITH MANY TYPES OF PAIN
AND SENSATIONS OF PAIN AND WHEN
HAVE YOU ONE LAYERED UPON
ANOTHER YOU HAVE YOUR BACK PAIN
AND CHEST PAIN AND SOMETIMES I
LOSE MY VISION I NEVER KNOW FROM
ONE DAY TO THE NEXT WHETHER I'LL
BE ABLE TO FUNCTION FULLY.
IT'S BEEN UNDESCRIBABLE.
SO CHRONIC PAIN IMPACT.
IT'S OBVIOUS IT IMPACTS PEOPLE'S
LIVES AND THERE'S RELIABILITY.
FOL
I WAS IN THE HOSPITAL PARALYZED
ON THE RIGHT HALF OF MY BODY
AGAIN FOR REASONS UNKNOWN MONTHS
AGO AND I NEVER KNOW WHETHER
I'LL BE ABLE TO FULFILL THE
COMMITMENTS I'VE ASSIGNED
MYSELF.
TIME.
THE TIME IT TAKES TO NOT ONLY GO
TO DIFFERENT APPOINTMENTS BUT TO
COORDINATE AND FACILITATE
COMMUNICATION BETWEEN PROVIDERS,
DEVELOP ON THE REFERRALS,
ETCETERA.
IT'S A SHOCKING AMOUNT AND
IRONIC YOU'RE IN A LOT PAIN SO
IT MAKES IT MORE DIFFICULT TO
ACCOMPLISH ADDRESSING IT.
INSOMNIA WAS DISCUSSED YESTERDAY
IN LENGTH.
I'VE NOT BEEN ALLOWED SINCE
2014.
I COULDN'T JUST JUMP ON A PLANE
WHEN MY GRANDDAUGHTER WAS BORN
AND ALTERED HOW MY FAMILY AND I
GO ABOUT OUR LIVES.
AND I WAS ABLE TO FLY AND WE
CAME UP WITH ALTERNATE NEEDS TO
SUPPORT BUT I RETIRED EARLIER
THAN I WANT TO FRUSTRATION AND
GUILT COMMON TO ALL BUT AND IT
TOOK AWAY THE MEANS OF COPING
WITH STRESS.
MY KIDS DON'T KNOW WHO I WAS
CHRONIC PAIN AND MY SON HAD TO
EXPLAIN TO FRIENDS MY MOMMY HAD
HOSES IN HER KNOWS AND THE
SUFFERING.
I CAN'T EXPLAIN WHAT IT'S LIKE
TO BREATHE EVERY BREATH AND IT
HURTS.
IT TEACHES YOU HUMILITY.
WHEN I WAS DOING PULMONARY
THERAPIES WITH OXYGENARIANS AND
I WAS 36 WAS HUMBLING.
WE RECENTLY LOST EVERYTHING WE
OWNED AND WE'RE STILL COPING
WITH THAT BUT BECAUSE OF THE
RESILIENCE IN COPING WITH MY
CHRONIC PAIN AND HOW IT AFFECTS
MY FAMILY WE'RE ABLE TO APPLY
THOSE COPING SKILLS TO OUR
ONGOING SITUATION NOBODY WILL
KNOW WHAT ME AND MY FAMILY HAVE
BEEN THROUGH OR SEE THE
SUFFERING PART OF THE HEALING
PROCESS FOLLOWING A GIVEN
SURG
SURGERY.
MY CHILDREN HAVE HAD TO GROW UP
EARLY AND ARE EXTREMELY
COMPASSIONATE PEOPLE.
I'M CHOOSING TO SMILE.
JOY IS A CHOICE.
AND I AM THANKFUL FOR EACH AND
EVERY DAY I'M HERE AND THE
INCREDIBLE PEOPLE IN MY LIFE AND
THANKFUL TO BE WHERER AND FOR
THE KINDS OF OPPORTUNITIES AND
VOICE THE GRATITUDE IN A WHOLE
NEW WAY AND ENHANCED MY FAITH.
IN THE MIDDLE OF THE NIGHT WHEN
EVERYBODY ELSE SLEEPING AND
DON'T KNOW HOW YOU CAN STAND A
MINUTE OF THAT PAIN IT'S A GREAT
TIME TO ENHANCE YOUR FAITH.
PAIN AFFECTS EVERYONE IN THE
PATIENT'S SPHERE.
LOVED ONES, FRIENDS, WORK,
COMMUNITY.
ETCETERA.
THESE ARE SOME OF THE MANY
DIFFERENT PAIN TECHNIQUES I HAVE
TRIED, MEDITATION, ONE OF THEM.
WISH LIST.
THESE FIVE ITEMS ARE THINGS,
COMPASSION HAS BEEN MENTIONED
SEVERAL TIMES YESTERDAY AND
TODAY AND I THANK YOU FOR THAT.
THAT'S PROBABLY THE NUMBER ONE
ASPECT I WOULD WITH OF ANY
CLINICIAN INTERACTING WITH A
PATIENT.
LISTEN TO THEM AND LOOK AT THEM
AS A WHOLE PERSON AND NOT JUST
THE ONE SMALL PIECE IN FRONT OF
YOU.
A FULL DIAGNOSIS.
A FULL DIAGNOSIS IS CRITICAL.
PEOPLE DON'T WANT A LABEL BUT AS
A PATIENT YOU DON'T HAVE A LABEL
AND YOU DON'T HAVE BUILT IN
SUPPORT OR NETWORKS OR
RESOURCES.
YOU'RE ALL ALONE.
GETTING A FULL DIAGNOSIS IS
PARAMOUNT.
COMMUNICATION BETWEEN PROVIDERS.
AND THERE'S INTEGRATED
MANAGEMENT.
I WAS AT THE PAIN MANAGEMENT AND
NATIONAL JEWISH HEALTH HOSPITAL
THERE DURING INITIAL DIAGNOSIS
OF MY DISORDER.
THE OTHER 600 SOME APPOINTMENTS
WAS ON ME AND I'VE E-MAILED CAN
SOMEONE PROVIDE THOUGHTS ON THE
WAY AHEAD TO NO AVAIL.
IF THERE'S A ONE CHART TO ALLOW
COMMUNICATIONS COMMUNICATE
BETWEEN FACILITIES THAT WOULD BE
FANTASTIC.
AS IT IS, I RECEIVED CARE IN
OMAHA IN SEVEN DIFFERENT
ENTITIES AND THEY'RE NOT ABLE TO
COMMUNICATE WITH ONE ANOTHER AND
FOR PROVIDERS TO HELP PATIENTS,
YOU NEVER KNOW HOW ONE KIND WORD
YOU PROVIDE TO THAT PATIENT CAN
COMPLETELY ALTER HOW THEY VIEW
THEIR JOURNEY.
I MENTIONED SOME RESOURCES.
I'VE BEEN SHOCKED HOW SOME
DOCTORS AND ENTITIES AREN'T
AWARE OF THEIR RESOURCES SUCH AS
CASE MANAGERS AND PATIENT
ADVOCATES AND REFERRAL MANAGERS
AND VARIOUS PLATFORMS THERE.
THE ONUS IS ON THE PATIENTS AND
THERE'S COMPASSION.
LISTEN TO THE PATIENT AND
DIAGNOSE THEM AND REMEMBER PAIN
IS RELATIVE.
MY 5 PAIN TODAY WOULD HAVE BEEN
MY 10 YEARS AGO.
ONE FINAL NOTE, YOU MIGHT BE
THAT SOURCE OF ENCOURAGEMENT
THAT SINGLE RESOURCE THAT KEEPS
SOMEONE GOING.
A WISE WOMAN I KNOW ONCE TOLD ME
ACCEPTING YOUR SITUATION DOES
NOT MEAN YOU'RE GIVING UP.
THAT SIMPLE STATEMENT SHE SHARED
WITH ME HELPED ME KEEP MOVING
FORWARD.
THANK YOU ALL FOR THE POWERFUL
FORUM AND EVERYTHING YOU ALL ARE
DOING TO HELP PAIN PATIENTS ME
LIVE OUR BEST LIVES.
THANK YOU SO MUCH.
>> THANK YOU, LIEUTENANT COLONEL
SNYDER AND HAPPY YOU'LL BE ABLE
TO JOIN US FOR THE NETWORKING
SESSION LATER.
WE ARE GOING TO MOVE INTO THE
THIRD AND FINAL JUNIOR
INVESTIGATOR SESSION NOW.
WE HAVE FOUR SPEAKERS.
DR. TAGERIN.
AND DR. BANARU.
ACHIEVING TREATMENT RESPONSE IN
INDIVIDUAL PARTICIPANT
META-ANALYSIS DISCUSSING
EFFECTIVENESS OF MIND, BODY FOR
KNEE AND OSTEOARTHRITIS AND
NEUROPATHIC PAIN.
I'LL START THE VIDEO NOW AND BE
BACK TO FACILITATE QUESTIONS
AFTERWARDS.
THANK YOU.
>> HELLO.
I'LL BE TALKING HOW THE EXTRA
CELLULAR MATRIX CAN AFFECT
PLASTICITY.
EVEN IF YOU HAVE AN INJURY
THAT'S PERIPHERAL AND FAR FROM
THE BRAIN IT CAN CHARGE THE
BRAIN AND PLASTICITY IN
DIFFERENT BRAIN AREAS INCLUDING
THE HIPPOCAMPUS AND THIS IS NOT
LIMITED TO CELLS.
THEY HAVE SHOWN THEY MAY AFFECT
EXTRA CELLULAR MATRIX ITSELF IN
TERMS OF THE ORGANIZATION AND SO
THE QUESTION IS THEN HOW IS THE
ENVIRONMENT INFLUENCED GLIAL
STRUCTURE IN THE CONTEXT OF
PAINFUL INJURIES.
WE USED THE MOUSE MODEL GOING TO
20 WEEKS AFTER INJURY.
WHAT WE FOUND IS THERE'S
INCREASE IN THE AVAILABILITY
THAT PARALLELS THE EXTRA
CELLULAR MATRIX CHANGES IN TERMS
OF ASTROCYTES AND MICROGLIA.
IT'S NOT JUST THE SHEER NUMBERS
BUT THEIR MORPHOLOGY.
WE HAVE DATA FROM OUR ASTROCYTES
WHERE THE PROCESSES CHANGES AND
THEY BECOME LESS COMPLEX YOU MAY
SAY WHO CARES IF THE CELL LOOKS
DIFFERENT.
WHY WOULD THAT MAKE ANY
DIFFERENCE?
CELLS THAT LOOK DIFFERENT ALSO
FUNCTION DIFFERENTLY.
THERE'S RELATIONSHIP BETWEEN
STRUCTURE AND FUNCTION.
WE'RE CURRENTLY DOING
EXPERIMENTS WHERE WE'RE TRYING
TO SEE IF WE CAN LOCALIZE THE
DENDRITES INSIDE GLIAL CELLS
IMPACTING THE CELLS.
AND WHAT WE ARE TRYING TO SEE IS
TRYING TO SEE WHETHER THESE
MOR
MORPHOLOGICAL CHANGES ARE
AFFECTED IN THE MICROGLIA.
WE WANT TO BE ABLE TO TEASE
APART THE AFFECTS OF THE EXTRA
CELLULAR MATRIX AND MOVED TO IN
VITRO CULTURE SYSTEMS TO GET TO
MICROGLIAL CELLS AND GOING TO
MORPHOLOGY CHANGES AND THE CELL
AREA BECOMES LARGER WITH INDUCED
RIGIDITY AND YOU SEE THAT THE
CELLS ENGULF MORE AND MORE OF
THESE SPHERES.
THIS CAN INFLUENCE THE STRUCTURE
AND FUNCTION OF GLIAL CELLS AND
THIS CAN HAVE IMPLICATIONS IN
THE CONTEXT OF CHRONIC PAIN AS
WELL AS UNDERSTANDING THE
HEALTHY BRAIN.
WITH THAT I'D LIKE TO THANK THE
MEMBERS OF THE LAB AND THANK YOU
FOR YOUR TIME.
>> THANK YOU FOR THE OPPORTUNITY
TO PRESENT OUR RESEARCH.
I'M SARA TILL.
PELVIC PAIN CAN HAVE WELL
DOCUMENTED.
CHRONIC PELVIC PAIN IS
HETEROGENEOUS AND PATIENTS MAY
HAVE CONTRIBUTIONS FROM ONE OR
MORE CONDITIONS DEPRESSION AND
ANXIETY AND MALADAPTIVE PAIN
AVOIDANCE BEHAVIORS ARE COMMON
AND CONTRIBUTE TO THE NEGATIVE
IMPACT ON QUALITY OF LIFE.
THAT CONTRIBUTES TO DEVELOPING
STRATEGY FOR DEALING WITH PAIN.
THERAPY AND PHYSICAL THERAPY AND
ACCU PRESSURE MAY HELP SYMPTOMS
OF CHRONIC PAIN.
MOST STRATEGIES CAN BE DIFFICULT
FOR PATIENTS TO ACCESS DUE TO
AVAILABILITY AND COST.
WEB-BASED INTERVENTIONS MAY HELP
MITIGATE CHALLENGES AND THERE'S
MODEST EFFECT SIZES BUT
INTERVENTIONS WITH MULTIPLE
MODALITIES APPEAR TO HAVE
IMPROVED EFFICACY AFFECTS.
FINALLY, THE HETEROGENEITY MEANS
IT'S UNLIKELY WE'LL IDENTIFY A
SINGLE STRATEGY EFFECTIVE FOR
ALL PATIENTS AND RATHER WE
SHOULD FOCUS ON CREATING A
TAILORED PLAN THAT MEETS
INDIVIDUAL NEEDS.
TO THAT END OUR PROJECT AIMS TO
DEVELOP A WEB-BASED PROGRAM TO
HAVE A CLINICAL TRIAL TO LOOK AT
THE RESPONSES OF THE
INTERVENTION.
OUR HYPOTHESIS IS PATIENTS WILL
IMPROVE PHYSICAL FUNCTION AND
QUALITY OF LIFE COMPARED TO
THOSE UNDERGOING CARE ALONE.
WE CREATE THE PROGRAM IN
MULTIPLE WITH CONTENT EXPERTS
ACROSS MANY DISCIPLINES AND
CREATING PATIENTS FOR FOCUS
GROUP AND USING THE FEEDBACK TO
APPLY THE PROGRAM.
WE PLAN THE RANDOMIZED CONTROL
TRIAL LATER THIS YEAR.
WE WOULD USE THE DATA FOR
FURTHER REFINEMENT AND PATIENT
PHENOTYPES MORE ROBUSTLY
EVALUATED WITH FOCUS OF
DEVELOPMENT OF PERSONALIZED
STRATEGIES FOR CHRONIC PELVIC
PAIN.
THANK YOU AND I'LL BE HAPPY TO
ANSWER ANY QUESTIONS.
>> THANK YOU.
RECENTLY MIND BODY EXERCISES
INCLUDING TAI CHI AND YOGA WERE
LOOKED AT HOWEVER IT'S A LIMITED
EVIDENCE BASE AND OFFER
GUIDANCE.
THE DOSE AND TREATMENT RESPONSE
REMAINS UNCLEAR.
THE FACTORS ASSOCIATED WE
INTRODUCED OUR STUDY AND LOOK AT
MIND BODY INTERVENTIONS FOR
OSTEOARTHRITIS AND TO IDENTIFY
THE IDEAL DOSE AND DURATION OF
EXERCISE WHICH WOULD INDUCE
TREATMENT RESPONSE.
WE OBTAINED INDIVIDUAL DATA FROM
RANDOMIZED CONTROL TRIALS FOR
TAI CHI AND YOGA AND THE
OUTCOMES FOR PAIN AND FUNCTION.
WE PERFORMED A META-ANALYSIS
USING MIXED LINEAR REGRESSION
MODELS ON INDIVIDUAL STUDIES.
WE OBTAINED AND TAI CHI WAS THE
MOST EFFECTIVE INTERVENTION AND
YOGA WAS COMPARABLE TO PHYSICAL
THERAPY.
FOR AIM TWO, TREATMENT
REPUBLICANS WAS DEFINED USING
THE RCS CRITERIA.
AND REGRESSION MODELS FOR
CLUSTERING INDIVIDUAL STUDIES
WERE USED.
WE FOUND THAT 21% OF PATIENTS
RESPONDED TO THE TREATMENT.
THERE WAS AN EFFECT ON THE BMI
AND PHYSICAL FUNCTION REMAIN
SIGNIFICANTLY ASSOCIATED WITH
TREATMENT RESPONSE.
FOR EVERY 10-POINT IMPROVEMENT
IN FUNCTION THE CHANCE OF
TREATMENT RESPONSE GOES UP FOR
AIM 3, DURATION OF INTERVENTION
WAS CATEGORIZED IN THREE DOSE
AND THE DOSE WAS CATEGORIZED
BASED ON TOTAL AMOUNT OF
EXERCISE PER WEEK.
WE FOUND THAT 10-12 WEEKS OF
EXERCISE HAS MORE TREATMENT
RESPONSE COMPARED TO 6-8 WEEKS
OF INTERVENTION.
WE ALSO FOUND 60-120 MINUTES OF
EXERCISE A WEEK WAS ASSOCIATED
WITH FIVE TIMES HIGHER ODDS OF
TREATMENT RESPONSE COMPARED TO
120 MINUTES PER WEEK OF
EXERCISE.
THE OVERALL CONCLUSIONS AND
IMPLICATIONS WERE MIND BODY
INTERVENTIONS PRODUCE SIMILAR
AFFECTS TO THOSE OF STANDARD
PHYSICAL THERAPY AND TREATMENT
OF OSTEOARTHRITIS AND THOSE WITH
LOWER BMI ARE MORE LIKELY TO
RESPOND TO EXERCISE-BASED
INTERVENTIONS.
60 TO 120 MINUTES A WEEK OF
EXERCISE FOR FOUR WEEKS IS THE
IDEAL DOSAGE TO ILLICIT A
TREATMENT RESPONSE IN
INDIVIDUALS WITH OSTEOARTHRITIS.
THANK YOU FOR YOUR ATTENTION AND
TIME.
>> I'D LIKE TO FIRST THANK THE
ORGANIZERS FOR THE OPPORTUNITY
TO SHARE OUR WORK.
AND THIS FOLLOWED THE NEURONS
AND THE BRAIN PERFORMS
PERCEPTIONS OF PAIN, ITCH, TOUCH
AND TEMPERATURE AND RESPOND.
IN PAIN STATES ABNORMAL ACTIVITY
OF THE ALT HAS INAPPROPRIATE
PERCEPTION OF PAIN AND WE AIM TO
VISUALIZE ACTIVITY WITH THE TIME
SCALES OF WEEKS TO MONTHS
RELEVANT FOR CHRONIC PAIN
CONDITIONS.
THE GOAL OF THE PROJECT IS TO
DEFINE HOW THE FUNCTION OF THE
SPECIFIC CHANGES AND THE
TRANSITION FROM THE NOCICEPTIVE
PAIN TO A NEUROPATHIC FUNCTION.
TO ADDRESS THIS QUESTION I
DEVELOPED TECHNIQUES FOR CHRONIC
NEURONS IN THE DORSAL HORN WHICH
IS WHERE THEY ARE AT AND HAVE
CALCIUM INDICATORS AND THE
STRONGEST PROTECTION TARGET OR
BY TRANSGENIC EXPRESSION.
THE LONG-TERM ACCESS TO THE
NEURONS AND CREATED A WINDOW
OVER THE LUMBAR AND SPINAL CORD.
WE EXAMINED THE REPRESENTATION
OF TEMPERATURE AND RESPOND TO
THERMAL STIMULATION OF THE IPSO
LATERAL PORTION.
AND TEMPERATURES IN THE CENS SE
TO COLD, WARM OR HOT TEMPERATURE
AND ALL RESPONSE TOUCHES ARE
PRESENT IN THE PROJECTION.
IN THE ABSENCE OF INJURY WE
OBSERVED TEMPERATURE ACTIVITY
REMAIN STABLE OVER PERIODS OF
WEEKS AND ACCORDINGLY THE
ACTIVITY AND SENSITIVITY OF
TEMPERATURE SENSITIVE NEURONS
BETWEEN AWAKE AND ANESTHETIZED
CONDITIONS AND WE CAN ASK HOW
THIS CHANGES AFTER THE PAIN AND
WE LOOKED AT THE INJURY OF THE
NERVE.
WE OBSERVED PROFOUND CHANGES IN
LOSS OF THE SENSING AND
RESPONSIVE TO HEAT AND HOT AND
COLD TEMPERATURES.
THESE SUPPORT THE POTENTIAL OF
THIS APPROACH AND CAN LOOKING AT
THE STIMULI AND IDENTIFY CHANGES
IN CIRCUITS ASSOCIATED WITH
MALADAPTIVE PAIN.
WE'RE EXTENDING THIS WORK TO
PLASTICITY AS WELL.
AND THANK YOU TO THE NIH AND FOR
YOUR ATTENTION.
>> PUT YOUR QUESTIONS IN THE
CHAT.
I'LL START WITH A QUESTION FOR
DR. TAJERIAN.
FIRST, I'M SORRY IF I
MISPRONOUNCED YOUR NAME.
>> THAT WAS PERFECT, ACTUALLY.
>> WONDERFUL.
>> SO I WAS CURIOUS THE
ARTIFICIAL MATRICES YOU USED FOR
YOUR CELL CULTURES, HOW DID YOU
DETERMINE THE APPROPRIATE
DENSITIES AND APPROPRIATE -- I'M
SORRY, I CANNOT THINK OF THE
WORD.
>> SO THERE'S A COUPLE OF
REASONS.
OF COURSE PART IS THE LOGISTICS
ARE THESE READILY AVAILABLE
THOUGH WE HAVE A COLLABORATOR
WHO COULD HELP US MAKE CUSTOM
MATRICES IT'S KIND OF NOT THE
FIRST STEP IN OUR WORK.
THERE'S A CRUDE AND GENERAL WAY
TO DO IT AND IT'S A WIDE RANGE
BECAUSE WE WANTED TO COVERING
EVERYTHING YOU MAY HAVE
DIFFERENT NUMBERS DEPENDING ON
THE STUDIES YOU'RE LOOKING AT.
IN FACT WE'VE DONE MICRO SCSCOP
AND MEASURE D RIGIDITY AND
DEPENDING ON THE COURSE OF THE
INJURY AND DEPENDING ON RECOVERY
YOU MAY GET DIFFERENT NUMBERS SO
WE WANTED TO COVER A WIDE RANGE.
AS THE FIRST LOOK WE PICKED A
LARGE RANGE.
DOWN THE ROAD WE'D LIKE TO FOCUS
MORE ON THE RANGE AND WE THINK
THAT'S THE MOST PHYSIOLOGICALLY
RELEVANT BALLPARK AND THEN WE'LL
BE CLOSER TO LOOKING AT THE
DIFFERENT BIO CHEMICAL
COMPOSITIONS.
>> THANK YOU.
AS A FOLLOW-UP, HOW DOES THE
PERIPHERAL INJURY ALTER THE
FIRING?
>> IF WE ONLY KNEW.
IT'S FUNNY BECAUSE WHEN I
STARTED THINKING ABOUT THIS,
PEOPLE HAD BEEN LOOKING AT THIS
IN THE CONTEXT OF STROKE,
CANCER, DEVELOPMENT BUT NOT IN
THE CONTEXT OF CHRONIC PAIN IN
THE ADULT BRAIN ESPECIALLY WHEN
INJURY IS NOT IN THE BRAIN.
SO PEOPLE AT FIRST DIDN'T
BELIEVE ME LIKE WHAT'S CHANGING
THESE THINGS?
SO IN MY OPINION, THE OVER
ARCHING MECHANICS THERE IS THAT
YOU HAVE NEUROINFLAMMATION IN
THE HIPPOCAMPUS AND WE KNOW THE
ECM IS REGULATED HEAVILY BY
GLIAL CELLS.
MY OPINION IS SOMETHING IS
HAPPENING IN THE PERIPHERY
CROSSING OVER TO THE BRAIN.
IT COULD BE DUE TO NEURON
COMMUNICATION AND WE'RE STILL
LOOKING AT THAT.
ONCE HAVE YOU THE NEURAL
INFLAMMATION IN THE BRAIN YOU
HAVE THE CHANGING ENVIRONMENT OF
EXTRA CELLULAR MATRIX CHANGING
NEURONAL FUNCTION AND GLIAL ARE
CHANGING AND ONCE IN THE CYCLE
THOUGH THE PERIPHERY IS HEALED
YOU CREATE THIS ENVIRONMENT
MALADAPTIVE.
SO YOU CAN'T JUST TARGET THE
CELLS BUT THE CELLULAR
ENVIRONMENT.
WE STILL DON'T KNOW EXACTLY
WHAT'S CAUSING IT.
WE HAVE SOME CLUES TO IDENTIFY A
SPECIFIC MATRIX OF PROTEINS AND
WE THINK THAT PLAYS AN IMPORTANT
ROLE BUT THERE COULD BE OTHERS.
>> IS IT IMPORTANT FOR PEOPLE TO
PROVIDE THE INTERVENTION AS A
MEAN OF ENTRY INTO THE HEALTH
CARE SYSTEM.
>> WE MODELLED OUR INTERVENTION
AND LEVERAGED AN INTERVENTION BY
MENTORS PRIMARILY WEB BASED AND
WHERE THE DATA WAS THAT EFFICACY
IS ESSENTIALLY FAIRLY EQUIVALENT
I CERTAINLY DON'T MEAN TO
MINIMIZE THE REALLY SUBSTANTIAL
IMPACT THAT OUR THERAPISTS
PERFORMING BEHAVIORAL THERAPY OR
PHYSICAL THERAPISTS WHO ARE I
THINK MAGIC WITH THEIR PATIENTS
WITH CHRONIC PELVIC PAIN.
I DON'T MEAN TO MINIMIZE THEIR
CONTRIBUTION AND OUR GOAL IS TO
LOOK AT A POPULATION IN MICHIGAN
AND HAVE PATIENTS WHO ARE LOCAL
AND PATIENTS COMING FROM DETROIT
AND HAVE DIFFERENT ACCESS ISSUES
RELATIVE TO THAT LOCATION AND WE
HAVE A LOT OF PATIENTS WHO COME
FROM RURAL AREAS EVEN UPPER
PENINSULA DRIVING POTENTIALLY
EIGHT HOURS TO SEE US AND GIVEN
THAT, IT'S REALLY CHALLENGING TO
FIND A COGNITIVE BEHAVIORAL
THERAPIST OR ACUPUNCTURIST AND
OUR SOLUTION WAS TO SAY HE'S AN
INTRODUCTION TO THESE THINGS AND
USUAL CARE AND WE'RE
RECOMMENDING THINGS LIKE
COGNITIVE BEHAVIORAL THERAPY IF
POSSIBLE AND RECOMMENDING THINGS
LIKE PHYSICAL THERAPY IF PATIENT
CAN ACCESS BUT IF YOU CAN'T
ACCESS THESE THINGS HOW DOES
THIS MULTI-MODAL WEB-BASED
THERAPY DOES IT SERVE AS AN
ADJUNCT AND OUR HOPE IS THEY CAN
USE IT FOR PAIN EXACERBATION AND
INFORMING THEIR INTEREST IN
VARIOUS THINGS.
>> AS A FOLLOW-UP, HOW DO YOU
MANAGE THE FACT THAT PEOPLE HAVE
DIFFERENT ACCESS?
I MYSELF AM HAVING INTERNET
CONNECTIVITY ISSUES AND I'M IN
WASHINGTON, D.C.
>> SUCH AN IMPORTANT QUESTION
ALSO.
I THINK THIS IS SOMETHING WE'RE
STRUGGLING WITH.
AND THE WEB BASED OPTIONS ARE
BETTER THAN ASKING SOMEONE TO
DRIVE EIGHT HOURS TO SEE A
PHYSICAL THERAPIST BUT IT
CERTAINLY DOESN'T FIX THE ACCESS
PROBLEM FOR A LOT OF PEOPLE.
I FEEL IT'S A BIGGER ISSUE AND
WE HAVE TRIED TO MAKE A LOT OF
HAND OUTS AND THINGS AVAILABLE
AS PART OF OUR USUAL CARE
PRACTICE.
WE'RE DOING TELEMEDICINE
APPOINTMENTS AND SOMETIMES CAN
DO TELEPHONE VISITS AND NOT
APPLICABLE DIRECTLY TO THE
INTERVENTION BUT I THINK IT'S A
CRITICAL THING TO MANAGE.
>> I'M GLAD YOU'RE THINKING OF
ALL THE DIFFERENT ASPECTS.
I WOULD LIKE TO MOVE ON FOR
INTEREST OF TIME TO DR. BANNURU.
WE HAVE A FEW QUESTIONS.
ONE QUESTION CAME IN WAS THERE A
TYPE OF TAI CHI THAT WAS MOST
EFFECTIVE AND DO YOU HAVE
THEORIES WHERE IT WAS MORE
EFFECTIVE THAN OTHER
INTERVENTIONS?
>> IN ALL THE STUDIES SOME WERE
MODIFIED IN STYLES OF TAI CHI
AND AND ONE OF THE MAIN
HYPOTHESIS WAS THE MIND-BODY
EFFECT.
AS WE KNOW IT'S NOT JUST PAIN
THEY HAVE ANXIETY, STRESS, AND
MOSTLY DEPRESSION.
IN STUDIES WHERE WE WERE
EVALUATING THOSE ON DEPRESSION
AND ANXIETY, TAI CHI AND TO
CERTAINLY EXTENT YOGA WERE MORE
EFFECTIVE IN THOSE AND PROBABLY
ONE OF THE REASONS TAI CHI WAS
SLIGHTLY MORE EFFECTIVE FOR YOGA
WE WILL LOOK AT IT.
THEY WERE PRETTY CLOSE IN
EFFICACY.
>> ABOUT WHAT EVALUATING THE
INTERVENTIONS?
>> TO BE HONEST WE DID ONE
CLINICAL TRIAL AT OUR SITE BUT
THE REST OF OUR STUDIES WE HAVE
COLLECTED DATA FROM PEOPLE WHO
DID THESE RANDOMIZED TRIALS.
I WOULDN'T EXACTLY KNOW BUT ONE
DIFFERENCE I NOTICED ARE LIKE WE
HAD ALMOST ALL THE MIND-BODY
INTERVENTIONS WERE GROUP BASED
AND OTHERS WERE ONE-ON-ONE AND
THAT WAS ONE OF THE MAJOR
DIFFERENCES BETWEEN THESE.
>> THAT'S VERY INTERESTING.
WOULD YOU MIND REPEATING THE
NAME OF THE TAI CHI YOU USED.
>> IT WAS SUN STYLE.
>> OKAY.
THANK YOU.
>> THERE WAS AN EFFECT OF RACE
ON EFFECTIVENESS?
>> I WOULA
>> I WOULD SAYFFECT OF RACE ON
EFFECTIVENESS
>> I WOULD SAYAFFECT OF RACE
ON EFFECTIVENESS
>> I WOULD SAY IF I HAD MORE
POWER WE WOULD HAVE MORE
PATIENTS BUT THERE SEEMED TO BE
NO EFFECT ON RACE AND MORE THAN
20% WERE ASIAN AND WE HAD SOME
STUDY DONE IN ASIA.
SO WHEN WE CAN HAVE ENOUGH
DIVERSITY OR PANELS OF POWER TO
TEST.
>> THANK YOU.
MOVING ON TO DR. YAMOLINSKY.
HAVE YOU USED YOUR TECHNIQUE TO
STUDY THE EFFECT OF NEUROPATHIC
PAIN ON RESPONSES?
YOU SEEM TO BE MUTED.
SARAH, HE SEEMS TO HAVE TROUBLE
WITH HIS AUDIO.
CAN WE DO SOMETHING TO ADDRESS
THAT?
>> CAN YOU LOOK AT THE MIC AT
THE BOTTOM LEFT OF YOUR SCREEN
WHEREVER IT SHOWS THAT.
CLICK ON THE CARROT AND MAKE
SURE THE CORRECT MICROPHONE IS
CLICKED ON.
>> CAN YOU HEAR ME NOW?
>> YES, WE CAN.
>> GREAT.
WE LOOK AT RESPONSES AS WELL.
ONE CAVEAT IS RESPONDING TO PIN
AND A NNESTHESIA AND WE SEE GOO
RESPONSE.
IT SEEMS THERE'S AN EFFECT AND
>> SORRY.
CAN YOU COMMENT ON THE FATE OF
THE INNOCUOUS SENSING NEURONS?
>> AND WE THINK IT'S STILL THERE
SO WE'RE TRYING TO LOOK AT
WHETHER THERE IS POTENTIALLY THE
PROCESSING AFTER SCANNING.
>> THANK YOU.
I ALSO NEGLECTED TO MENTION THAT
QUESTION STARTED BY SAYING THAT
YOUR WORK IS REALLY BEAUTIFUL.
ONE MORE QUESTION FOR YOU.
YOUR DATA SEEMS TO SHOW
DIFFERENCES.
>> THERE'S SEGREGATION OF
THERMAL CELL ACTIVITY AND IT
BECOMES MUCH MORE MODAL.
MANY ARE SENSITIVE SO WE CAN
LOOK AT THESE TOGETHER.
>> THANK YOU.
ANOTHER QUESTION JUST CAME IN
FOR DR. BANNURU.
IT'S INTERESTING MORE MINUTES OF
TAI CHI WOULD IMPACT BETTER.
ANY THOUGHTS?
>> IT'S A GREAT QUESTION.
WHAT WE OBSERVED ACROSS ANY
INTERVENTION IS THAT ESPECIALLY
WE NOTICED IN OUR TRIAL WITH
PATIENTS WE NOTICED
ACROSS ALL INTERVENTIONS.
>> THANK YOU.
THAT'S VERY INTERESTING.
HAVE ANY PANELISTS INCLUDED
TECHNIQUE BASED COGNITIVE
EMBODIMENT PROGRAMS FOR PATIENTS
LIVING WITH PERSISTENT PAIN?
ANOTHER QUESTION FOR DR
DRDR
DR. YAMOLINSKY, HAVE YOU LOOKED
AT PORTIONS?
>> EVERYTHING IN THE RAMDEL 1.
>> WE'RE GOING TO MOVE ON.
DOES ANYONE HAVE ANY LAST THING
THEY'D LIKE TO SAY?
YOU CAN SAY NO.
THANK YOU ALL AGAIN AND THANK
YOU SO MUCH FOR PARTICIPATING IN
OUR SYMPOSIUM THIS YEAR.
>> THANK YOU FOR THE
OPPORTUNITY.
>> THANK YOU SO MUCH.
AS YOU ALL SAW THAT WAS THE
THIRD OF THREE POSTER SESSIONS.
AND IN ADDITION TO THE POSTER
SESSION, WE PRESENT AN AWARD
NAMED AFTER DR. MITCHELL MAX.
AND I AM NOW GOING TO INTRODUCE
A BRIEF PRESENTATION PUT
TOGETHER TO TELL YOU MORE ABOUT
DR. MAX THE PERSON BEHIND THE
AWARD.
ONCE THE VIDEO PRESENTATION IS
OVER, DR. SHANNON ZENK FROM THE
NATIONAL INSTITUTE OF NURSING
RESEARCH WILL PRESENT THE ACTUAL
AWARD AND THE AWARDEE WILL GIVE
A PRESENTATION.
THANK YOU.
>> THE NIH PAIN CONSORTIUM
HONORS DR. MITCHELL MAX FOR HIS
LIFE TIME CONTRIBUTION TO PAIN
RESEARCH.
IT'S AWARDED ANNUALLY TO THE
BEST POSTER PRESENTATION FROM
THE YOUNG INVESTIGATOR PAIN
CONSORTIUM AND IT'S MY PRIVILEGE
TO REMIND YOU OF DR. MITCHELL
MAX.
HE WAS RECRUITED TO NIH IN 1983
BY THE DIRECTOR OF CRANIOFACIAL
RESEARCH TO DEVELOP A CLINICAL
RESEARCH PROGRAM IN ANALGESIC
STUDIES AT NIDCR.
HE SERVED AS MEDICAL DIRECTOR OF
THE PAIN CLINIC.
IN 2005 HE WAS APPOINTED CHIEF
OF THE NIDCR.
HE WAS ALSO A CAPTAIN IN THE
COMMISSION CORPS.
HE WAS A MAN OF VISION AND
ESTABLISHED STANDARDS FOR
CLINICAL TRIALS METHODOLOGY AND
PUBLISHED THE DESIGN OF A TRIAL
ADVANCES IN PAIN RESEARCH AND
THERAPY.
THE FIGURE BELOW SHOWS THE
CITATION GROWING FROM 49 TO OVER
700.
AND THEY APPLIED IT TO THE
DIFFICULT AREA OF PAIN AN
CONDUCTED TRIALS AND STUDY THE
EFFICACY FOR NEURO PATHIC PAIN
DEMONSTRATING IT WAS EFFECTIVE
IN METHODS.
HE WAS A LEADER OF PAIN
RESEARCH.
HE HELPED STRATEGIZE THE WORLD
HEALTH ORGANIZATION CANCER UNITS
PROGRAM IN CANCER PAIN RELIEF.
ALSO, HE LOOKED AT ACUTE PAIN
AND CANCER PAIN.
HIS PUBLICATION FOR THE
ATTENTION OF COMMUNITY AND
CONTRIBUTIONS TO PAIN AND IN 19
-- 1988 HE PUBLISHED A PAPER ON
THE EFFICACY OF THE RESPONSE AND
PAINFUL NEUROPATHY.
IN 2002 HE PUBLISHED AN ARTICLE
IN THE JOURNAL OF PAIN HOW TO
MOVE PAIN AND SYMPTOMS RESEARCH
FROM TO THE MAINSTREAM.
HE WAS A PIONEER IN PAIN
GENETICS.
IN 1998 HE STUDIED PATIENTS AND
HE PUBLISHED 24 PAPERS ON THE
TOPIC FROM THE STUDIES ON
CANDIDATE GENE POLYMORPHISMS AND
ASIEBING APPLICATION STUDIES AND
LOOK AT THE PAIN AS A NEW
DISCIPLINE FOR PAIN DISCOVERY
AND LED TO MANY DISCOVERIES
DURING THE PAST 15 YEARS.
HE WAS VERY SUPPORTIVE AND
ALWAYS GENEROUS WITH HIS TIME TO
TRAIN AND MENTOR DOZENS OF YOUNG
INVESTIGATORS AND HE DEVELOPED A
STUDY DESIGN AND RESEARCH
METHODS AND ALWAYS HELPED
MAINTAIN WORK AND LIFE.
I HOPE YOU ALL AND ESPECIALLY
YOUNG INVESTIGATORS IN PAIN
RESEARCH ARE INSPIRED BY HIS
GROUNDBREAKING ACHIEVEMENTS.
I BELIEVE THAT THE RESEARCH
EXCELLENCE NAMED AFTER
DR. MITCHELL MAX WILL HELP
ADVANCE YOUR CAREER.
THANK YOU FOR THE INTRODUCTION.
>> HI, GOOD AFTERNOON EVERYONE.
THE PAIN CONSORTIUM RECOGNIZE
THE IMPORTANCE OF SUPPORTING
EARLY STAGE INVESTIGATORS AND OF
HIGHLIGHTING THEIR WORK.
DR. MITCHELL MAX WAS NOT ONLY
COMMITTED TO PAIN RESEARCH BUT
ALSO TO THE TRAINING OF YOUNG
INVESTIGATORS.
FOR THIS YEAR'S AWARD A PANEL OF
PAIN CONSORTIUM MEMBERS FROM
ACROSS NIH JUDGED THREE JUNIOR
INVESTIGATOR PRESENTATION.
THE JUDGES HAD AN EXTREMELY
DIFFICULT TASK OF SELECTING AN
AWARDEE BASED ON THE QUALITY OF
THE PRESENTATION, THE INNOVATIVE
NATURE OF THE WORK AND THE DEPTH
OF KNOWLEDGE OF THE PRESENTER.
ALL THREE OF THIS YEAR'S
PRESENTERS ARE DESERVING OF
RECOGNITION AND I KNOW YOU'LL
JOIN ME IN CONGRATULATING ALL OF
THEM.
YOU SAW THE TWO FINALISTS AT THE
END OF THE SESSION AND I'LL
BRIEFLY INTRODUCE THEM AND
INVITE TO YOU VIEW THEIR FULL
BIO GR
B
BIOGRAPHIES.
AND DR. BANNURU HE'S WORK
FOCUSSED ON NON-PHARMACOLOGICAL
MANAGEMENT OF PAIN.
AND DR. YAMOLINSKY IS IN NEURO
BIOLOGY AT BOSTON CHILDREN'S
HOSPITAL.
HIS RESEARCH INTERESTS INCLUDE
THE FUNCTION, PLASTICITY AND
DYSFUNCTION OF MAMMALIAN SENSORY
SYSTEMS.
IT'S MY PLEASURE TO INTRODUCE
THIS YEAR'S MITCHELL MAX
AWARDEE, DR. EDWINA ROKI.
HE'S AN ASSOCIATE PROFESSOR AND
DIRECTOR OF THE Ph.D. PROGRAM AT
THE UNIVERSITY OF ALABAMA AT
BIRMINGHAM SCHOOL OF NURSING.
DR. AROKE GRADUATE FROM THE DUKE
UNIVERSITY NURSE ANESTHESIA
PROGRAM AND EARNED HIS Ph.D.
FROM THE MASSACHUSETTS MEDICAL
SCHOOL.
HIS PROGRAM OF RESEARCH EXAMINES
THE MECHANISMS THAT CAUSE AND
SUSTAIN CHRONIC PAIN AND RACIAL
PAIN DISPARITY.
DR. AROKE HAS RECEIVED NUMEROUS
PRESTIGIOUS AWARDS INCLUDING
RESEARCHER OF THE YEAR FROM THE
AMERICAN ASSOCIATION OF NURSE
ANESTHESIOLOGY FOUNDATION AND
DIDACTIC FACULTY OF THE YEAR
FROM THE AANA.
HE'S ALSO A FELLOW IN THE
AMERICAN ACADEMY OF NURSING.
TODAY HE'LL PRESENT HIS WORK
GENOMIC PATHWAYS ENRICHED BY
DIFFERENTIALLY METHYLATED GENES
ARE LINKED TO RACIAL DISPARITIES
IN CHRONIC LOW BACK PAIN.
THERE'LL BE TIME FOR QUESTIONS
AT THE END AND THANK YOU TO
DR. AROKE AND THE FINALISTS FOR
ALL THEIR GREAT WORK.
>> THANK YOU SO MUCH, DR. ZENK
FOR THAT INTRODUCTION.
AGAIN, CONGRATULATIONS TO ALL
THE FINALISTS.
I'M HONORED TO RECEIVE THIS
AWARD AND HUMBLING TO RECEIVE AN
WARD NAMED AFTER DR. MITCHELL
MAX AND FOCUSSING ON THE WHOLE
PERSON THEME, NO ONE CAN ARGUE
IS ONE OF THE REASONS FOR
DISABILITIES WHEN YOU LOOK AT
THE REASONS WHERE PEOPLE LOOK AT
THIS, LOW BACK PAIN IS THE
SECOND LEADING CAUSE SECOND ONLY
TO RESPIRATORY DISEASES.
AS MOST OF US SIT HERE CHANCES
ARE YOU MAY BE A LITTLE SORE IN
YOUR BACK AND A LITTLE STIFFNESS
BUT THE GOOD NEWS IS IT'S GOING
GO AWAY.
UNFORTUNATELY FOR SOME IT WILL
PROGRESS TO CHRONIC AND LOW BACK
PAIN MEANING LASTING MORE THAN
12 WEEKS.
FOR 80% OF PEOPLE WITH CHRONIC
LOW BACK PAIN WE DON'T KNOW THEY
HAVE IT IN THE FIRST PLACE.
THEY HAVE NON-SPECIFIC CHRONIC
LOW BACK PAIN.
IT'S NOT LINKED TO TRAUMA OR A
DISEASE.
DIAGNOSING THIS IS A MAJOR
CHALLENGE.
CHRONIC LOW BACK PAIN
DISPROPORTIONATELY AFFECTS
AFRICAN AMERICANS AND PEOPLE OF
LOW SOCIO ECONOMIC STATUS.
SPECIFICALLY IDENTIFIED AS
NON-HISPANIC WHITE OR
NON-HISPANIC AFRICAN AMERICAN.
YOU CAN SEE HERE AGAIN AFRICAN
AMERICANS HAVE HIGHER PAIN
SEVERITY AND INTERFERENCE
MEANING THE PAIN AFFECTS THEIR
ACTIVITIES OF DAILY LIVING.
THAT BRINGS TO MIND THE KEY
QUESTION OF THE DAY FOR ME WHICH
IS RACE IS SOMETHING THAT WE USE
SO MUCH IN OUR RESEARCH.
YOU KEEP HEARING THE QUESTION
WHERE THERE'S RACIAL DIFFERENCES
BUT WITH NO DOUBT RACE IS NOT A
BIOLOGICAL VARIABLE.
THERE'S NO GENE THAT CODES FOR
SOMEBODY'S RACE.
RACE IS A SOCIAL CONSTRUCT AND
IT'S A CLASSIFICATION OF PEOPLE.
SUCH THAT YOU CAN HAVE TWO
INDIVIDUALS OF THE SAME
BIOLOGICAL PARENT.
ONE CHOOSE TO IDENTIFY AS WHITE,
WHILE ANOTHER CHOOSE TO IDENTIFY
AS BLACK DEPENDING ON THE SKIN
COLOR.
MORE SHAPE OF NOSE.
SO HOW DOES A SOCIAL CONSTRUCT
DEVELOP WHETHER YOU'RE AT HIGHER
RISK OF DEVELOPING A PAIN OVER
ANOTHER PERSON?
THE OBJECTIVE OF MY WORK REALLY
IS LOOK AT THE ROLE OF
EPIGENETICS.
COULD THEY BE PLAYING A ROLE?
YOU MAY BE ASKING, WHY
EPIGENETICS?
JUST TO UNDERSTAND IT'S A STUDY
OF HERITABLE CHANGES CHANGING
EXPRESSION WITHOUT THE SEQUENCE.
EPIGENETICS IS A STUDY OF HOW
ENVIRONMENTAL FACTORS OR
ENVIRONMENTAL EXPOSURES REGULATE
GENE EXPRESSION WITHOUT CHANGING
THE DNA SEQUENCE.
THIS IS A PROCESS AND HOW WE GO
FROM STEM CELLS TO COMORBIDITY
CELLS IN THE BODY BUT CAN ALSO
CHANGE PHENOTYPE AND WE LOOK AT
THE LIFE CYCLE OF A BUTTERFLY.
AS IT GOES TO THE FORMING
EXCHANGES FROM THE EGG, LARVA,
PUPA SO THE FULL BUTTERFLY, THE
GENOME HASN'T CHANGED BUT THE
EXPRESSION OF THOSE GENES
CHANGES TO AN EPIGENTIC
MECHANISM.
IT IS POSSIBLE CHANGES IN THE
EPIGENOME IS WHAT DRIVES THE
PHENOTYPE THAT LEADS TO RACIAL
DISPARITIES?
SO IF YOU WERE TO SEQUENCE IT IT
WOULD LOOK SIMILAR.
AS WE GO THROUGH LIFE WE'LL HAVE
DIFFERENT ENVIRONMENTAL
EXPOSURES, SPECIFICALLY
DIFFERENT STRESSORS.
HAVE YOU THE STRESS OF
EDUCATION, WORK AND FAMILIES.
FOR THE BLACK INDIVIDUAL THERE'S
THE ADDITIONAL STRESS OF RACIAL
DISCRIMINATION AND INJUSTICE.
IF YOU WERE TO RE-EXAMINE THE
EPIGENOME IT WOULD BE DIFFERENT
BETWEEN THE BLACK AND WHITE
INDIVIDUAL AND PERHAPS FOLLOWING
A TRAUMATIC EVENT.
SO TO TEST THIS HYPOTHESIS WE
RECRUITED 50 ADULTS WITH CHRONIC
LOW BACK PAIN AND A FEW WITHOUT.
50.
BLACK AND 50 WHITE.
WE DROPPED ONE FROM THE ANALYSIS
BECAUSE THEY SELECTED
MULTIRACIAL.
WE USED REPRESENTATION BY
SEQUENCING TO LOOK AT THE
MANIPULATION.
IT'S IMPORTANT TO KNOW IT'S ONE
TYPE OF EPIGENETIC CHANGE.
THE OTHER TYPE OF EPIGENETIC
CHANGES SUCH AS HISTONE
MODIFICATIONS AND CIRCULATION
AND MICRO RNA WE LOOKED AT THE
MOST STABLE EPIGENETIC CHANGE
SHOWED TO TRANSFER FROM ONE
GENERATION TO THE OTHER AND LOOK
AT EXPRESSED GENES.
THE TOP IS THE FIRST COMPARISON.
WE LOOKED AT THE INDIVIDUALS WHO
HAVE CHRONIC LOW BACK PAIN AND
IDENTIFIED OVER 2800 WITH THIS
LOCI AND WE DECIDED TO COMPARE
BLACKS WITH CHRONIC LOW BACK
PAIN AND WITHOUT CHRONIC LOW
BACK PAIN.
AND WE HAD DIFFERENT ELEMENTS
AND LOCI AND WE HAD DIFFERENCES.
SO THESE ARE THE TOP 20 PATHWAYS
BY THE GENES AND INTRODUCED THE
LOCI.
AS WE SEE WHEN WE COMPARE BLACKS
WITH WHITES WITH NON-SPECIFIC
CHRONIC LOW BACK PAIN THERE'S A
CALCIUM SIGNALLING PATHWAY.
WE KNOW THE DETECTION AND
PROCESSING OF PAINFUL STIMULI IS
DEPENDENT ON STANDARDS INCLUDING
THE CALCIUM AND SODIUM CHANNELS
AND EVEN OTHER CHANNELS AND
LONG-TERM CHANGES IN THE CHANNEL
EXPRESSION AND FUNCTION
CONTRIBUTES TO CHRONIC PAIN
ESPECIALLY NEUROPATHIC PAIN.
THAT MAY BE WHAT COULD BE
CONTRIBUTING FOR RACIAL
DISPARITIES IN PAIN.
AS WE SEE THE SECOND PATHWAY
THERE'S A DOPAMINE DARPP32.
THAT PLAYS A CRITICAL ROLE IN
THE INTEGRATION OF NEURO SIGNALS
AND THERE'S RESPONSIVE TO
DOPAMINE AND GLUTAMINE.
WE KNOW THEY BOTH PLAY ESSENTIAL
ROLES IN PAIN TRANSMISSION AND
MODULATION.
WE ALSO SEE THE RECEPTORS,
OPIATE SIGNALLING PATHWAYS.
MOST HAVE BEEN SHOWN TO PLAY A
ROLE IN PAIN MODULATION AND
PERCEPTION.
THEN WE DID A COMPARISON LOOKING
AT DIFFERENT PATHWAYS TO LOOK AT
WHICH PATHWAYS ARE ENRICHED IN
BLACK AND WHITE.
THIS WAS VERY CRITICAL BECAUSE
ONE OF THE KEY CRITICS OF THE
EXISTING DISPARITIES RESEARCH IS
WE ALWAYS PROVIDE AS A
COMPARISON GROUP AND ASSUMING
ALL BLACKS ARE THE SAME AND ALL
WHITES ARE THE SAME.
IT WAS IMPORTANT TO TEASE OUT
THE WORK AND WHY IS IT NOT ALL
BLACKS DO DEVELOP PAIN?
WHY DO NOT ALL WHITES DEVELOP
PAIN.
WE COMPARED BLACKS WITH PAIN AND
WITHOUT PAIN AND WHITES WITH
PAIN AND WITHOUT PAIN.
AND IT BECOMES MORE CLEARER.
THE KEY PATHWAYS IN WHICH BLACKS
PLAY A CRITICAL ROLE IN STRESS
AND STRESS DEREGULATION.
THE PATHWAYS IN WHITES INCLUDING
THE NON-SIGNALLING PATHWAY AND
THESE PATHWAYS PLAY A CRITICAL
ROLE IN NEUROINFLAMMATORY
PROCESSES.
SO WE DECIDED NOW TO, OKAY,
LET'S LOOK AT THE SIDE BY SIDE
COMPARISON.
THIS SHOWS HOW SIGNIFICANT ARE
THE DIFFERENT PATHWAYS.
THE LEVEL OF SIGNIFICANCE
DOESN'T NECESSARILY TRANSLATE TO
EFFECT SIZE.
HOWEVER, WHEN YOU HAVE
EQUIVALENT SIZES FROM THE TOP
PATHWAYS WHICH PLAY A CRITICAL
ROLE IN STRESS AND RELEASING
HORMONE SIGNALLING AND DOPAMINE
SIGNALLING, THEY'RE MORE
SIGNIFICANT IN BLACK INDIVIDUALS
THAN IN WHITE INDIVIDUALS.
AND WE NOTICE THE
NEUROINFLAMMATORY PROCESSES,
SIGNALLING AND ALL THESE
PATHWAYS APPEAR TO BE MOST
SIGNIFICANT IN WHITE INDIVIDUALS
THAN IN BLACK INDIVIDUALS.
SO WHAT DOES ALL THIS MEAN?
THE LIVED EXPERIENCE OF BLACK
INDIVIDUALS IS SIGNIFICANTLY
MORE STRESSED THAN WHITES AND
EPIGENETICS HAS GIVEN US A
WINDOW INTO SOME OF THE
EXPERIENCES MAY LEAD TO WORSE
PAIN FOR BLACKS THAN WHITES.
OF COURSE, THESE ARE NAUGHT
CAUSATIONAL.
FUTURE STUDIES INCLUDING WHAT IS
GOING ON IN MY LAB WILL LOOK AT
GENE EXPRESSION AND PROTEINS AND
I ALWAYS LOVE TO SAY I FOCUS ON
EPIGENETICS BECAUSE THE CHANGES
ARE REVERSIBLE.
MAYBE IN THE FUTURE WE CAN
REVERSE SOME OF THE EPIGENETIC
CHANGES AND TRICK PAIN.
AND I JUST WANT TO EXPRESS
SINCERE GRATITUDE FOR ALL WHO
SUPPORTED MY WORK AND LAB
PARTICIPANTS AND COLLABORATORS.
THANK YOU.
>> THANK YOU SO MUCH.
THAT WAS REALLY GREAT.
I'M SURE THAT MITCHELL MAX WOULD
BE THRILLED TO HEAR THIS VERY
INTERESTING GENETIC AND GENOMIC
DATA.
NOW WE HAVE A FEW MINUTES FOR
QUESTION TO OUR WINNERS.
AND TO FACILITATE THE DISCUSSION
I WOULD LIKE TO START WITH THE
QUESTION WHAT ARE THE CRITICAL
GAPS IN OUR KNOWLEDGE FOR
IMPLEMENTING THESE GENOMIC
APPROACHES TO PAIN DISPARITIES?
>> WE ALWAYS THINK OF SOCIAL
DETERMINATES OF HEALTH BUT
THEY'RE UNDERGIRDED THIS TO
WHERE WE ARE TODAY AND THOUGH
YOU MAY BE COMPARING TWO GROUPS,
THERE'S MORE GOING ON BEYOND THE
SKIN COLK KCOLOR AND HOW DO WE
INTEGRATE THE MEC MOLECULAR
PARTS AND LOOK AT LIVED
EXPERIENCE AND HOW MUCH
DISCRIMINATION SOMEONE FACES OR
HOW MUCH INJUSTICE OR
INTERNALIZED STIGMA DOES SOMEONE
FACE?
DO WE HAVE GOOD MEASURES?
GENOMIC AND EPIGO GOGONE --
EPIGENOMIC RESEARCH IS FOCUSSED
ON PHENOTYPE.
IF YOU DON'T PHENOTYPE WELL YOU
WILL NOT HAVE THE ANSWER.
SO COMING UP WITH VERY GOOD
PHENOTYPES IS GOING TO BE VERY
CRITICAL.
THEN IF YOU HAVE GOOD
PHENOTYPES, WE CAN NOW
UNDERSTAND LINK AND THE GENOMIC
AND EPIGENOMIC WORKS.
ONCE YOU FIGURE THAT OUT WE
TALKED ABOUT PERSONALIZED
MEDICINE FOR QUITE A WHILE.
HOW DO WE NOW START TAILORING
THIS TO THE INDIVIDUAL SO WE CAN
ADDRESS SPECIFIC CONCERNS AND
SAY IT APPEARS AS IF STRESS
PLAYS AN IMPORTANT ROLE.
IT APPEARS FINANCIAL STRESS AND
HOW CAN WE ADDRESS THIS?
BRING THE SOCIAL WORKER IN?
BEING ABLE TO PHENOTYPE AND LINK
THE INFORMATION THEN PERSONALIZE
CARE ARE CRITICAL AREAS TO LOOK
AT.
>> GREAT, THANK YOU.
SO WHAT IS YOUR IDEA ON NEW
METHODS THAT ARE NEEDED TO FILL
THE GAPS YOU JUST DESCRIBED IN
THE SHORT TERM AND IN THE LONG
TERM?
>> IN PLI VIEW I THINK
COLLABORATION WILL BE VERY
CRITICAL.
THESE ARE MAJOR QUESTIONS WILL
CANNOT BE SOLVED BY ANY
INDIVIDUAL.
I COLLABORATE QUITE A BIT WITH A
PSYCHOLOGIST AND HE LOOK AT THE
PSYCHOSOCIAL ASPECTS OF PAIN.
ONE RESEARCHER WILL LOOK AT BIO
SOCIAL ASPECTS.
THE EFFECT OF DEPRESSION AND
CATASTROPHIZING AND DO THEY HAVE
SUPPORT AND LOOK AT SOCIO
ECONOMIC STATUS.
SO COMING UP WITH COLLABORATIONS
BETWEEN INVESTIGATORS SO YOU ARE
ASKING THE SAME QUESTION FROM
THE SAME SAMPLE SO THAT WE CAN
TIE IT TOGETHER TO SAY HEY, WHEN
WE SEE GREATER PAIN SEVERITY,
HOW DOES IT LOOK LIKE WHEN WE
LOOK AT DEPRESSIVE SYMPTOMS IN
THESE SAMPLE?
WHAT ARE THE EPIGE GENGENOMIC C
THEY CAN PLAY AND THAT WILL GO A
LONG WAY IN THE QUESTIONS WE
FACE TODAY.
AND OF COURSE FUNDING IS ALWAYS
AN UNDERLYING PROBLEM.
IF WE HAVE MORE MONEY, WE CAN
SOLVE MORE PROBLEMS.
>> DID YOU SEE DIFFERENCES IN
THE GENE PATHWAYS AND IF YES,
WHAT IS THE REASON FOR THE
GENDER BASE?
>> FOR THIS ANALYSIS WE DID
CONTROL FOR AGE, WE CONTROLLED
FOR GENDER DIFFERENCES AND WE
ALSO CONTROLLED FOR SOCIO
ECONOMIC STATUS IN OUR ANALYSIS.
WE HAVE -- I HAVE LOOKED AT
GENDER DIFFERENCES BECAUSE FROM
THE PHENOTYPING, WE DID NOT SEE
ANY GENDER DIFFERENCES IN OUR
PHENOTYPE.
SO WHEN WE COMPARED PAIN
SEVERITY BETWEEN MALES AND
FEMALES THAT WASN'T A
DIFFERENCE.
I HAVEN'T LOOKED AT THE
EPIGENETIC PART OF IT.
PART COULD BE BECAUSE IN THE
REDUCED REPRESENTATION ANALYSIS
WE REMOVED THE X AND Y
CHROMOSOMES AND ONLY FOCUSSED ON
THE AUTOSOMES.
SO AGAIN SEX AND GENDER
DIFFERENCES REQUIRES FURTHER
INQUIRY.
THAT LINKS ITSELF TO DIFFERENCES
IN SEXUAL MINORITIES AND LOOKING
AT TRANSGENDER MINORITIES.
HOW DOES TREATMENT AFFECT PAIN
AND THESE ARE QUESTION WHICH
REQUIRE OUR ATTENTION.
>> THIS IS A VERY INTERESTING
AREA IN THE GENOMIC RESEARCH AND
WHEN YOU LOOK INTO THAT YOU CAN
SEE VERY DIFFERENT PATHWAYS,
GENETIC PATHWAYS.
I THINK ONE OF THE INSIGHT IN
PAIN IN GENERAL WERE IN
GENETICS.
I WOULD BET IN EPIGENOMIC
STUDIES IT WOULD BE THE SAME.
WE HAVE ANOTHER QUESTION.
HAS THERE BEEN STUDY HOW
DISCRIMINATION AND STRESS MIGHT
RELATE TO OR PREDICT THE
EPIGENETIC BASED RESULTS?
>> WE HAVE DONE THAT DATA.
WE HAVE SELF-PERCEIVED STRESS
AND INTERNALIZED STIGMA.
I'M FINISHING UP WRITING THAT
PAPER.
I ONLY HAD 10 MINUTES SO I
DIDN'T GO INTO THAT.
YES, ONCE YOU CONTROL FOR RACE
AND RACIAL DIFFERENCES WE SEE
CHANGES IN THE EPIGENETIC
DIFFERENCES AND THE RELATED
PATHWAYS APPEAR TO BE CAN'T.
SPECIFICALLY LOOKING AT THE
DOPAMINE SIGNALLING PATHWAY AND
ONE PATHWAY THAT APPEARS TO COME
UP WHICH WE HAVE SEEN INITIALLY
WHERE WE JUST LOOKED AT PATHWAYS
INVOLVED IN REMODELLING AND
LOOKING AT WHAT THE RELATIONSHIP
IS BETWEEN ALL THE PATHWAYS AND
IT'S ONE WAY TO SEE THE PATHWAYS
ENRICHED SO WHAT IS THE NETWORK
INTERACTION GOING ON?
THAT'S PART OF THE WORK WE'RE
TRYING TO DO IN DECIPHERING THE
INTERACTION BETWEEN FOR INSTANCE
THE STRESS AND DOPAMINE PATHWAYS
AND BONE OSSIFICATION AND
REMODELLING AND LOOKING AT HOW
THEY CROSS EACH OTHER IS ALSO
IMPORTANT.
THE ROLE OF STRESS I THINK WILL
BE PUBLISHED SOON.
>> DO YOU YOUR TEAM OR
COLLEAGUES HAVE PLANS TO LOOK
SEE IF POTENTIAL INTERVENTIONS
CAN IMPROVE OR WORSEN THE
EPIGENETIC RESULTS IN PATIENTS
BEYOND THE PATIENT OUTCOME.
>> MY HOPE IS I KNOW THAT SOME
OF THE WORK NOT IN LOW BACK PAIN
BUT THINGS LIKE EXERCISE,
MINDFULNESS, ACTIVITIES LIKE WE
SAW WITH ONE OF THE FINALISTS DO
INDUCE EPIGENETIC CHANGES.
PEOPLE ENROLLED IN EXERCISE, I
THINK THAT WAS DONE BY ANGELA
AND SAW EXERCISE DOES AFFECT
GENE EXPRESSION.
WE KNOW MINDFULNESS OR
MEDITATION DOES AFFECT GENE
EXPRESSION.
MY HUNCH IS IF WE WERE TO ENROLL
PEOPLE IN MINDFULNESS
INTERVENTION WE SHOULD START
SEEING CHANGES IN THE EPIGENETIC
LEVEL WOULD CHANGE AND IT'S A
MATTER OF NOW CONNECTING THE
DOTS IN MY OPINION.
I DON'T THINK THERE'S ANYTHING
OUT YET.
THAT'S MY HYPOTHESIS
>> GREAT, YOU WERE TALKING ABOUT
MIND-BODY INTERVENTION.
WHAT ABOUT IS RELATED LIFESTYLE
POSSIBLE UNDERLYING FACTORS FOR
THE EPIGENETIC RESEARCH?
>> TWO-MINUTE WARNING.
>> THERE IS A WHOLE AREA OF
NEUTRAL EPIGENETICS COMING UP
ESPECIALLY WHEN YOU LOOK AT
THINGS LIKE THE INTERSECTION OF
PAIN AND OBESITY AND
INFLAMMATORY DIET AND
NON-INFLAMMATORY DIET.
AGAIN, THESE ARE THINGS WHICH
ARE DONE OUTSIDE THE REALM OF
PAIN RESEARCH.
MY HOPE IS THAT WE MAY BE
INTERESTED IN COLLABORATING AND
LOOK AT SOME OF THE PHENOTYPES.
NOW, NUTRITION DEFINITELY
AFFECTS HOW MUCH PAIN AND I KNOW
WE HAVE NUTRITION OR DIET AND
WHEN PEOPLE EAT PLEASURABLE
FOODS THEY HAVE LESS PAIN.
DIET AFFECTS EPIGENETICS.
NOW CAN WE LINK THOSE AND LOOK
AT SOMEBODY'S DIET, LOOK AT PAIN
AND EPIGENETICS?
AND EVEN MORE IMPORTANT, CAN WE
REVERSE SO THAT WE CAN SEE IF WE
CAN GIVE THE APPROPRIATE DIET TO
INDUCE MORE COMFORT AND SEE IF
WE INDUCE THE EPIGENETIC CHANGES
THAT COULD DECREASE PAIN
SEVERITY AND IT'S VERY EXCITING
TO THE FUTURE.
I LOOK FORWARD TO SEEING WHAT
OTHERS WILL DO AND JOINING ME IN
THIS AREA.
>> THANK YOU.
THANK YOU SO MUCH, DR. AROKE.
AGAIN, CONGRATULATIONS ON YOUR
AWARD AND THANK YOU FOR SHARING
YOUR IDEAS WITH US.
WE HAVE MORE QUESTIONS SO
HOPEFULLY THOSE QUESTIONS WILL
COME AT OUR NETWORKING SESSION
THAT WILL START AT 3:45.
NOW WE'LL HAVE A 30-MINUTE BREAK
AND RETURN AT 1:40 P.M. EASTERN
TIME FOR OUR THIRD AND LAST
PANEL SESSION IMPLEMENTATION OF
WHOLE-PERSON APPROACHES TO PAIN
MANAGEMENT.
>>WELCOME BACK.
I'M PLEASED TO INTRODUCE OUR
MODERATOR OF THE FINAL SESSION.
HE RESEARCH PORTFOLIO IS
CLINICAL ARTHRITIS AND MANAGES
THE CONSORTIUM PROGRAM PART OF
THE NIH HELPING TO END ADDICTION
LONG-TERM AND PATIENT-CENTERED
EFFORTS TO ADDRESS THE NEED FOR
EFFECTIVE AND PERSONALIZED
THERAPIES FOR CHRONIC LOW BACK
PAIN.
HE GOT HIS Ph.D. IN PATHOLOGY
FROM THE OHIO STATE UNIVERSITY
AND M.D. DEGREE FROM CHINA.
DR. ZHENG, THE FLOOR IS YOURS.
>> THANK YOU.
WE'RE MOVING TO THE SESSION
THREE.
PANEL SESSION THREE, IMPLEM
IMPLEMENTATION OF THE WHOLE
PERSON APPROACHES TO PAIN
MANAGEMENT.
I'LL A PROGRAM DIRECTOR.
IN THIS SESSION WE'LL START WITH
FOUR SPEAKERS.
PRESENTATION FROM FOUR SPEAKERS.
EACH SPEAKER WILL HAVE 15
MINUTES.
WE'LL HOLD QUESTIONS TO THE END
WHEN WE MOVE TO THE Q&A SESSION
SO THERE'S NO QUESTIONS IN
BETWEEN THE TALKS.
AND WHEN WE GET TO THE Q&A
SESSION, WE'LL ANSWER QUESTIONS
IN THE CHAT BOX FOR OUR SPEAKERS
AND THEN WE'LL HAVE TWO
COLLEAGUES LEAD THE PANEL
DISCUSSION AFTER THAT.
SO THE FIRST SPEAKER IS
MR. DAVID WHITE.
MR. WHITE IS A FORMER DIALYSIS
PATIENT AND GRATEFUL KIDNEY
TRANSPLANT RECIPIENT.
HE SITS ON MANY ADVISORY BOARD
AND WORKING GROUP INCLUDING NIH,
NIDDK HEMODIALYSIS OPIATE
PRESCRIPTION EFFORT HOPE
CONSORTIUM AND NIH HEAL
INITIATIVE PATIENT ENGAGEMENT
WORK GROUP.
PATIENT ADVOCATE FOUNDATION AND
NATIONAL ADVOCATE FOUNDATION
BOARD AND THE PART OF THE
PATIENT-CENTERED OUTCOME
INSTITUTE ADVISORY PANEL ON
PATIENT ENGAGEMENT.
AND HIS PRESENTATION THE TOPIC
OF HIS PRESENTATION IS MEMORIES
AND LESSONS LEARNED FROM
DIALYSIS GRADUATE.
DAVID, WELCOME.
>> THANK YOU ZHENG, THANK YOU
FOR THE WARM INTRODUCTION.
HELLO, EVERYONE.
I'M GRATEFUL TO BE HERE AND
NEVER THOUGHT I'D BE SPEAKING
ABOUT MY EXPERIENCE ON DIALYSIS
AND WITH PAIN.
I'LL TALK ABOUT MY CRASH INTO
KIDNEY FAILURE AND DIALYSIS.
IF YOU NEVER HEARD THE TERM
CRASH IT MEANS YOU DIDN'T KNOW
YOU HAD KIDNEY DISEASE UNTIL
YOUR KIDNEYS STOP WORKING
COMPLETELY AND THAT'S WHAT
HAPPENED TO ME IN 2009.
I'M ALSO GOING TO SPEAK ABOUT
LIVING WITH PAIN AS A DIALYSIS
PATIENT AND A LITTLE BIT ABOUT
MY INVOLVEMENT WITH PAIN STUDIES
IN THE HEMODIALYSIS POPULATION.
AND WE MAKE URINE AND THAT WAS
THE FOR ALMOST SIX YEARS AND AS
FAR AS THE PROCESS RATHER THAN
GOING INTO DETAIL I'LL JUST SHOW
YOU MY ACCESS LIVE AND IN COLOR.
THIS IS THE ARM WHY TWO .16
GAUGE NEEDLES WERE PUT INTO ME
BETWEEN 1,000 AND 1500 TIMES
OVER SIX YEARS AND THIS WAS MY
LIFE LINE.
IF YOU'RE INTERESTED IN HOW MY
KIDNEYS FAILED, BASICALLY I
WOULD SAY POOR HEALTH HABITS.
I WAS NOT VERY HEALTH CONSCIOUS
FOR A LONG TIME AND OVERWEIGHT
FOR A LONG TIME.
I SMOKED CIGARETTES FOR OVER 30
YEARS AND PROBABLY INDUCED
HYPERTENSION AND ALSO ATE A LOT
OF UNHEALTHY FOODS.
MOST IMPORTANTLY I DIDN'T GO TO
THE DOCTOR FOR A VERY LONG TIME
AND THAT ALL CAUGHT UP TO ME IN
THE FALL OF 2009 IN THE
EMERGENCY ROOM I FOUND OUT MY
KIDNEYS WERE NO LONGER WORKING.
THAT HAPPENED A LOT TO BLACK
PEOPLE.
KIDNEY FAILURE HAPPENS FIVE
TIMES AS MUCH AS FOR WHITE
AMERICANS AND IT'S A ONE SIZE
FITS ALL TREATMENT.
IMAGINE GOING TO A BARBERSHOP
AND HAIR SALON AND EVERYONE
WALKS OUT WITH THE SAME HAIRCUT.
THAT'S NOT COOL.
ESPECIALLY WHEN IT COMES TO
HEALTH CARE.
THE FIRST TIME I WALKED INTO THE
CLINICAL IT WAS A SHOCK AND
THERE WERE TUBES FILLED WITH
BLOOD FROM A BODY TO A MACHINE
AND IT WAS KIND OF QUIET EXCEPT
FOR THE MACHINES AND ALARMS.
IT WAS A FEAR-INDUCING AT
ATMOSPHERE.
SOME SIDE EFFECTS OF LOW BLOOD
PRESSURE FROM HAVING FLUID
PULLED FROM YOUR BODY TOO
QUICKLY.
NAUSEA, CRAMPING, WHICH I'LL
DISCUSS IN A COUPLE MINUTES AND
WHAT'S CALLED A DIALYSIS
HANGOVER WHICH IS SORT OF
FEELING WASHED OUT AND WANTING
TO EAT AND SLEEP AFTER A
SESSION.
IT'S JUST NOT A VERY PLEASANT
LIFESTYLE VERY OFTEN.
AND I WAS GOING DIALYSIS
SOMETIMES ONLY ONCE A WEEK.
ONE, I FLAT OUT DIDN'T WANT TO.
I DIDN'T LIKE IT.
SECOND REASON WAS IT WAS OFTEN
TOO EXPENSIVE FOR ME TO GO.
THAT ISSUE WASN'T ADDRESSED FOR
SIX MONTHS.
INMS OF PAIN, I HAD
DIFFERENT TYPES AND FROM A
PHYSICAL PERSPECTIVE AT THE
BEGINNING IT SORT OF HURT ALL
OVER.
I DIDN'T KNOW HOW TO EXPLAIN IT
BETTER THAN THAT.
IT WOULD HURT SITTING ON A CHAIR
FOR FOUR HOURS AND IMAGINE GOING
ON A CROSS COUNTRY FLIGHT WITH A
NEEDLE AND I HAD PAIN FROM THE
NEEDLE IN MY ARM THREE TIMES A
WEEK FOR YEARS.
PAIN FROM CLOTTING AND CRAMPING
FROM HAVING TOO MUCH FLUID
PULLED TOO QUICKLY AND A
DISEQUILIBRIUM AND SOMETIMES IT
HAPPENED IN THE FOURTH HOUR
SOMETIMES WITH TINGLING IN MY
HAND AND SOMETIMES MY FEET WOULD
CRAMP, SOMETIMES MY LEGS.
SOMETIMES MY ABDOMEN.
SOMETIMES MY CHEST.
I WOULD RESOLVE TO CRAMPING IF I
COULD BY HAVING SOMETHING SALTY
LIKE PRETZELS OR ASK THE
TECHNICIAN TO STOP THE MUCH FROM
PULLING FLUID.
THAT COULD ALLEVIATE THE
CRAMPING SOMETIMES.
USUALLY I'D TRY TO ALLEVIATE IT
BY STRETCHING THE CRAMPED MUSCLE
AND SOMETIMES WHEN I DID THAT
FIXING ONE CRAMP WOULD CAUSE
CRAMPING SOMEWHERE ELSE.
I'LL NEVER FORGET ONE TIME WHERE
I HAD TO LAUGH TO MYSELF BECAUSE
THE SITUATION WAS SO FUTILE WHEN
THAT HAPPENED.
THERE'S ALSO EMOTIONAL AND
SITUATIONAL PAIN CAUSED BY
FRUSTRATION.
THE PAINFUL FAMILY DISCUSSIONS I
HAD WITH MY WIFE REGARDING OUR
SITUAT
SITUATION.
THE PAIN THAT COMES FROM THE
STIGMA OF A DIALYSIS PATIENT
HAVING TO TELL FRIENDS I WAS ON
DIALYSIS AND WATCHING THEIR
REACTION GO FROM PITY TO
DISAPPEARING OFF THE RADAR.
I LOST MORE THAN ONE FRIEND THAT
WAY.
THERE'S PAIN THAT COMES WITH
STARTING YOUR LIFE AT AGE 47
WITH A CHRONIC ILLNESS, NO JOB,
INCOME OR HEALTH INSURANCE AND
THE SYSTEM THAT IS SUPPOSED TO
RELIEF PAIN DOES THE OPPOSITE.
THERE'S UNANECDOTE I WILL NEVER
FORGET WHEN AT THE END OF MY
SESSION, SOMETIMES ON OCCASION
AT THE END OF A SESSION, THE
PERSON'S HEART WILL CONTINUE TO
RACE.
MY HEART RATE WAS AT ABOUT 135.
THE ONLY RESOLUTION FOR THAT IS
TO WAIT FOR IT TO COME DOWN.
THAT HAPPENED TO ME MORE THAN
ONCE BUT THIS ONE TIME A NURSE
SAID MAYBE THAT WOULDN'T HAPPEN
IF YOU STOP DOING THE THINGS
YOU'RE DOING AND I KNEW SHE WAS
INSINUATING I WAS DOING DRUGS
AND I WAS NOT AND IT STICKS TO
ME TO THIS DAY TO THAT MOMENT
WHEN IT WAS MOST VULNERABLE A
HEALTH CARE PROFESSIONAL CHOSE
TO STICK ANOTHER KNIFE IN ME.
THAT'S PLAIN WRONG.
I OFTEN END TO END DIALYSIS
EARLY BECAUSE OF PAIN BEFORE IT
GOT BETTER AND THAT SORT OF
BLUNTS THE EFFECTIVENESS OF THE
THERAPY.
I WAS FORTUNATE TO HAVE A CARE
PLAN MEETING SIX MONTHS INTO MY
DIALYSIS JOURNEY THAT CHANGED MY
TRAJECTORY.
FOR YEARS I THOUGHT THAT WAS MY
FIRST CARE PLAN MEETING BUT
ACTUALLY IT WAS MY SECOND.
I WANT TO DO A SHOW AND TELL
WEDGE YOU RIGHT NOW.
THE FIRST WAS IN MARCH OF 2010.
THIS IS A THREE-PAGE PRINTOUT
AND I'M GOING READ ONE SECTION
OF IT TO YOU.
THE PATIENT WILL BE COMPLIANT
WITH TX, WHATEVER THAT MEANS,
REGIME AND WILL EXPERIENCE
LONG-TERM ADAPTATION EVIDENCED
BY ONE COMPLETING ALL PRESCRIBED
DIALYSIS TREATMENTS, TWO, LAB
RESULTS INDICATING COMPLIANCE
WITH DIET AND MEDICATIONS AND
LESSER HOSPITALIZATION.
THAT MEANT NOTHING TO ME AT THE
TIME.
I SIGNED IT BUT I HAD NO IDEA
WHAT IT MEANT.
IT WASN'T WRITTEN FOR ME BUT FOR
A SYSTEM.
IT DIDN'T HELP ME AT ALL.
VERY FORTUNATELY ABOUT THREE
WEEKS AFTER THAT, I HAD A SECOND
CARE PLAN MEETING THAT ADDRESSED
SOME SOCIAL ISSUES THAT SHOULD
HAVE BEEN TAKEN CARE OF FROM DAY
ONE.
I HAVE THAT FEAR AS WELL.
THIS IS TWO PAGES, 73 WORDS
INCLUDING NAMES AND IT ADDRESSED
WHAT SHOULD HAVE BEEN ADDRESSED
WHEN I STARTED DIALYSIS
TRANSPORTATION WAS THE FIRST
ISSUE.
ALSO GETTING ME SIGNED UP FOR
SSDI, GETTING ME NUTRITION
SUPPLEMENTS AND WITH STATE AND
NUTRITIONAL SERVICES SO I CAN
FOCUS ON GETTING BACK TO WORK.
THESE ISSUES SHOWED THAT
FINALLY, MY CLINIC CARES ABOUT
ME.
I'LL NEVER FORGET AT THE END OF
THE MEETING THE CHARGE NURSE
SAID, WE CAN HELP YOU WITH THIS
DAVID BUT TWO THINGS.
ONE, YOU'RE NOT GOING TO BE
AROUND MUCH LONGER IF YOU DON'T
START COMING TO DIALYSIS.
ALSO, YOU HAVE TO WE CAN HELP
YOU BUT YOU HAVE TO DO YOUR
PART.
YOU HAVE TO BE THE CAPTAIN OF
YOUR OWN CARE TEAM AND A TOOK
THAT TO HEART THAT VERY DAY AND
I STOPPED MISSING DIALYSIS
TREATMENTS COLD AND I KNEW
PEOPLE CARED AND DIDN'T WASTE
TIME PUTTING IN THE WORK THAT
NEEDED TO BE DONE.
MONTHS LATER AT THE END OF THAT
YEAR I FINALLY DID STOP SMOKING,
NEW YEAR'S EVE 2010 AND STARTED
EXERCISING THE NEXT DAY AND
DISCOVERED I COULDN'T DO A
SINGLE PUSH-UP AND THAT SET ME
ON A MISSION AND THANKS TO
EXERCISE, MY PAIN EXPERIENCE
IMPROVED.
IT MADE DIALYSIS MORE BEARABLE
AND MADE PAIN -- I TOOK A ROLE
IN MANAGING HEALTH PAIN AND
INTERACTING WITH THE WAY I
APPROACHED MY REHABILITATION.
EVERY MORNING I WAS ASK MYSELF
TWO QUESTIONS.
ONE, WAS AND THE SECOND QUESTION
IS AM I PHYSICALLY ABLE TO
EXERCISE.
I HAD TO DO AN INVENTORY OF MY
BODY PARTS TO DO WHAT WAS
HURTING AND WHAT WASN'T AND IF
SOMETHING WAS HURTING TO JUST
NOT EXERCISE THAT DAY AND I WAS
VERY CONSCIENTIOUS ABOUT THAT.
AT SOME POINT THAT MORNING I
SAID I KIND OF FEEL OKAY TODAY
AND IT TOOK ME A WHILE TO FIGURE
OUT WHY AND I THOUGHT OH, I'M
NOT IN PAIN.
AND THERE WAS A MINDFULNESS AND
DEEP BREATHING STUDY THAT
REQUIRED IN-CENTER
PARTICIPATION.
UNFORTUNATELY, THAT PART DIDN'T
WORK OUT FOR ME BECAUSE I
COULDN'T GET WITH THE IDEA OF
RELAXING AND CLOSING MY EYES AND
FOCUSSING ON BODY PARTS.
ONE OF THEM BEING AN ARM WITH
TWO .16 GAUGE NEEDLES STUCK IN
ME.
THAT DIDN'T WORK OUT FOR ME.
AS THE PAIN ADVISER FOR THE HOPE
CONSORTIUM IT'S BEEN A BETTER
EXPERIENCE AS AN ADVISER.
HEMODIALYSIS THE EXPERIENCE WE
BRING IS REWARDING NOT ONLY TO
OURSELVES BUT TO EVERY ASPECT OF
THE STUDY.
TRIAL DESIGN AND DEFINITELY
RECRUITMENT AND MOST IMPORTANTLY
REAL CAMARADERIE.
WE KNOW WE'RE NOT JUST
SPECTATORS.
WE HAVE REAL INPUT AND WE TAKE
ADVANTAGE OF THAT OPPORTUNITY.
IN SUMMARY I'D LIKE TO SAY A
WHOLE PARTNER APPROACH REQUIRES
PARTNERING WITH THE TEAM AND
FAMILY IN THE PROCESS AND IF YOU
GIVE US THE OPPORTUNITY,
RESOURCES AND SUPPORT WE WILL
NOT DISAPPOINT YOU.
THANK YOU VERY MUCH FOR
LISTENING.
THANK YOU, DAVID FOR SHARING
YOUR STORY.
AND SERVING THE PATIENTS ON THE
ADVISORY BOARD.
THIS IS AN IMPORTANT PART OF THE
PAIN MANAGEMENT TO TEACH US WHAT
MATTERS MOST FROM THE PATIENT
PERSPECTIVE.
IT'S MY PLEASURE TO INTRODUCE
DR. ARDITH DOORENBOOS FROM
UNIVERSITY OF ILLINOIS-CHICAGO.
SHE IS A PROFESSOR IN THE
DEPARTMENT OF BIO BEHAVIORAL
NURSING SCIENCE, COGNITIVE
NURSING AT UNIVERSITY OF
ILLINOIS-CHICAGO AND FELLOW OF
THE AMERICAN ACADEMY OF NURSING.
DR. DOORENBOOS WAS INDUCTED IN
THE SIGMA BETA TAO HALL OF FAME
AND HER RESEARCH IS CENTERED ON
PAIN AND SYMPTOM MANAGEMENT.
THE FLOOR IS YOURS.
>> THANK YOU SO MUCH.
I WANT TO THANK THE NIH FOR THE
KIND INVITATION TO PRESENT TO
YOU AS PART OF THE ENGAGING
STAKEHOLDERS AND IMPLEMENTATION
OF APPROACHES TO PAIN
MANAGEMENT.
I'M ESPECIALLY THRILLED TO
FOLLOW AFTER DAVID BECAUSE HE
REALLY THE STAGE OF WHAT WE'RE
TALKING ABOUT IN THIS PANEL
TODAY.
I WANT TO TAKE A MOMENT TO HONOR
THE LAND WE ALL LIVE AND WORK
ON.
I ACKNOWLEDGE I'M CURRENTLY IN
MICHIGAN NAMED FOR MICHIGAMI IN
THE HURON WATERSHED AND WHAT HAS
GROWN THROUGH THE CONNECTIONS OF
THE LAND BY THE PEOPLE ALONG
WITH THEIR NEIGHBORS AND THE
FUNDING I RECEIVED IS A K24 IN
TRAINING IN NON-OPIOID OPTIONS
AND TWO DIFFERENT PROJECTS
THROUGH CLINICAL AND PAIN
MANAGEMENT ONE YOU HEARD ABOUT
INTEGRATING APPROACHES TO PAIN
AND OPIOID USE IN HEMODIALYSIS
PATIENTS WHICH IS AN UL 1 AND
SOMETHING I'LL TALK MORE ABOUT A
LITTLE LATER ON IS THROUGH THE
PRAGMATIC AND IMPLEMENTATION
STUDIES FOR THE MANAGEMENT OF
PAIN A UH3 MECHANISM AND I'LL BE
TALKING ABOUT THE HYBRID
EFFECTIVENESS IMPLEMENTATION
TRIAL OF GUIDED RELAXATION AND
ACUPUNCTURE FOR CHRONIC SICKLE
CELL DISEASE PAIN.
WE FIRST NEED TO COME TO AN
UNDERSTANDING THAT PAIN IS
COMPLEX.
I FEEL HERE I'M TALKING TO THE
CHOIR.
WE KNOW THAT PAIN IS BOTH A
SENSORY AND AN EMOTIONAL
EXPERIENCE.
PAIN CAN BE AN ALARM OF DANGER
AND/OR A SIGNAL OF DAMAGE.
AS SUCH, PAIN ALERTS THE
INDIVIDUAL OF THREATENING
INTERNAL AND EXTERNAL
ENVIRONMENTAL DANGERS AND
PERFORMS THE ESSENTIAL LIFE
FUNCTION OF SIGNALLING NEED FOR
PROTECTION.
THE PAIN ALARM MAY SOUND IN
RESPONSE TO ACTUAL DANGER OR MAY
ACTIVATE IN ANTICIPATION OF
DANGER.
AND EVEN IF DAMAGE CAN'T BE D
DEMONSTRATED WITH A PHYSICAL
EXAM PAIN IS A PHYSICAL
EXPERIENCE.
PAIN AFFECTS ALL ASPECTS OF A
PERSON'S LIFE.
I WANT TO ACKNOWLEDGE THE NIH
FOR FOCUSSING THIS YEAR ON THE
WHOLE PERSON HEALTH.
BECAUSE PAIN REALLY IS
MULTI-DIMENSIONAL.
ESPECIALLY WHEN IT'S CHRONIC
PAIN IT TAKES A TOLL AN AN
INDIVIDUAL'S LIFE, FUNCTION AND
EMOTIONAL STATUS AND LIFE.
YOU MAY SEE SUFFERING IN
RESPONSE TO THE EXPERIENCE OF
DIMINISHED CAPACITY AND NEGATIVE
THOUGHTS AND FEELINGS,
HELPLESSNESS, HOPELESSNESS,
DESPAIR.
PAIN CAN BE SOCIALLY DEVASTATING
LEADING TO LOSS OF JOB, LOSS OF
PLAY, ENSTRANGEMENT FROM FAMILY
AND FRIENDS AND LOSS OF
INTIMACY.
SO WHY IS THIS IMPORTANT TO
KNOW?
AND WHY HAVE WE BEEN SPENDING
TWO DAYS FOCUSSING ON THIS?
ONCE KNOWN WE CAN THEN
MEANINGFULLY INCLUDE ALL THE
SKILLS AND EXPERIENCE OF THOSE
OTHER HEALTH PROFESSIONALS
ESPECIALLY SKILLED TO ADDRESS
THESE DOMAINS.
AND FOR PATIENTS, THE KNOWLEDGE
THAT A WHOLE PERSON APPROACH IS
NEEDED FOR PAIN.
WE JUST ARE NOT ABLE TO JUST
FOCUS ON ONE PIECE.
WE NEED TO LOOK AT THE WHOLE
PERSON.
SO THE RECOMMENDATIONS FOR
ADDRESSING COMPLEX CHRONIC PAIN
ARE INTEGRATED APPROACHES THAT
PRIORITIZE NON-PHARMACOLOGIC
THERAPY.
BUT HOW DO WE GET BUY-IN FOR
THIS TYPE OF RESEARCH?
AND WE DO THAT BY ENGAGING
STAKEHOLDERS.
THERE ARE A VARIETY OF
STAKEHOLDERS INCLUDING INSURANCE
AGENCIES, GOVERNMENT, HEALTH
CARE ADMINISTRATORS, CLINICIANS,
PATIENTS, FAMILY CAREGIVERS TO
JUST NAME A FEW.
FOR TODAY'S PRESENTATION I'M
GOING TO FOCUS ON THE PATIENT
STAKEHOLDER ENGAGEMENT ON SOME
OF THESE STUDIES.
WHY SHOULD WE ENGAGE
STAKEHOLDERS?
WHAT'S THE IMPORTANCE HERE?
THE IMPORTANCE IS IF YOU DON'T,
THERE ARE DISPARITIES THAT
EMERGE.
AND THROUGH COLLABORATION AND
DECISION MAKING THROUGH
IMPLEMENTATION AND
DISSEMINATION.
YOU HAVE A MUCH MORE RICHER
EVIDENCE BASE AND YOU BUILD
TRUST WITH THE POPULATION YOU
WANT TO IMPROVE THE QUALITY OF
LIFE FOR.
FOR THE PURPOSES OF THIS PANEL
DISCUSSION I'VE CHOSEN TWO
EXAMPLES OF PATIENT STAKEHOLDER
ENGAGEMENT.
FIRST, THERE'S INPUT INTO
INTERVENTION CHOICE FOR THE
GRACE TRIAL WHICH IS TRIAL
FOCUSSING ON SICKLE CELL DISEASE
AND THEY LOOKED AT 68 ADULTS
WITH SICKLE CELL DISEASE
ATTENDING THE CLINIC.
WE HONESTLY SAT WITH THEM IN THE
WAITING ROOM WHILE THEY WERE
WAITING TO BE BROUGHT INTO THE
CLINIC ROOM AND TALK TO THEM AND
SAID TELL US ABOUT YOUR PAIN
EXPERIENCE.
DO YOU HAVE PAIN TODAY.
WE SAID, WHAT WE WOULD LIKE TO
DO IS HELP WORK WITH YOU HAND IN
HAND ABOUT HOW WE CAN MAYBE HELP
WITH SOME OF THIS PAIN.
WHAT ARE SOME INTERVENTIONS THAT
YOU MIGHT BE INTERESTED IN
TRYING OUT FOR YOUR PAIN?
FROM THAT WORK WITH THE PATIENTS
SITTING IN THE SICKLE CELL
CLINIC WE FOUND RELAXATION OR
MEDICATION AND ACUPUNCTURE WERE
TWO INTERVENTIONS THAT THEY WERE
INTERESTED IN TRYING OUT.
AND WE'LL TALK ABOUT THE
PRIVILEGE WE HAVE OF ONGOING
PARTNERSHIP WITH TWO DIFFERENT
GROUPS OF PATIENT STAKEHOLDERS.
AND THE FIRST GROUP THAT I'D
LIKE TO INTRODUCE YOU TO IS THE
PATIENT BRIGADE.
AND THIS CAME ABOUT AS AN
INSPIRATION OF THE PATIENTS.
PATIENT STAKEHOLDER INITIATIVE
CREATED TO REFLECT THE DIVERSE
SOCIO ECONOMIC GROUPS IN THE
CHICAGO AREA.
AND THE MISSION OF THE PATIENT
BRIGADE IS TO PROVIDE AN ACTIVE
VOICE TO PATIENTS AND
COMMUNITIES AND IT'S GUIDED BY
THE PRINCIPLES OF
COMMUNITY-BASED PARTICIPATORY
RESEARCH.
AND THE CREATION BRIGADE WALKS
SIDE BY SIDE WITH US REVIEWING
PATIENT RECRUITMENT MATERIALS,
PROVIDING ADVICE ON IMPROVING
RATES AND DISSEMINATING
INFORMATION ABOUT RESEARCH
RESULTS TO THE COMMUNITY.
CITIZEN SCIENTISTS UNDERTAKE THE
WORK AND SERVE ON OUR AND LOOK
AT MEASUREMENT TOOLS AND DESIGN
CHANG
CHANGES AND HAVING AN ACTIVE
VOICE IN ALL PHASES OF RESEARCH
IS A KEY FACTOR TO ENSURING NOT
ONLY DIVERSITY AND INCLUSIVENESS
IN CLINICAL TRIALS BUT ALSO IN
EXPANDING THE RESEARCH OF
CUTTING-EDGE DISCOVERIES.
TO THE CITIZEN SCIENTISTS WERE
INSTRUMENTAL IN RECOMMENDING
DESIGN CHANGES.
AND WE CAME UP WITH USING THE
DESIGN WHICH WAS CALLED THE
SMART DESIGN WHICH IS SEQUENTIAL
MULTIPLE ASSIGNMENT
RANDOMIZATION.
AND WHAT HAPPENS IS THAT IT
CONSIDERED SOME OF THE REAL
WORLD CLINICAL SITUATIONS.
FOR EXAMPLE, IF I'M SEEING
SOMEONE IN CLINIC AND THEY'RE
HAVING PAIN, WHAT I WOULD SAY TO
THEM IS YOU KNOW, FOR A NUMBER
OF PEOPLE LIKE YOU, ACUPUNCTURE
HAS WORKED VERY WELL AND THEN I
DESCRIBE A LITTLE BIT ABOUT
THAT.
DO YOU THINK THAT MIGHT BE OF
INTEREST TO YOU?
AND IF THE PERSON SAYS YES, I
SAY, OKAY, WELL, WHY DON'T WE
GIVE IT A TRY FOR FIVE, SIX
WEEKS AND AT YOUR NEXT
APPOINTMENT WE'LL TAKE A LOOK AT
IT GIN.
-- AGAIN.
SO IN SIX WEEKS WHEN THEY COME
BACK FOR THEIR FOLLOW-UP
APPOINTMENT WHAT I DO IS SAY, SO
HOW ARE YOU DOING AND CHECK IN
ON THEIR PAIN.
IF THEY'RE PAIN HAS IMPROVED I
SAY HALLELUJAH.
THIS IS WORKING.
IF IT ISN'T, I'LL SAY MAYBE WE
NEED TO TRY THIS A LITTLE BIT
LONGER OR IT'S ADAPTIVE AND
THAT'S WHAT THE SMART DESIGN
DOES.
IT IS ADAPTIVE BASED ON THE
PATIENT'S RESPONSE.
THEY ALSO HELP US WITH MODIFYING
OUR DESIGN.
SO THIS IS OUR ORIGINAL DESIGN
WE HAD AND YOU CAN SEE AT THE
BEGINNING WE HAD ACUPUNCTURE OR
CARE IN THE SICKLE CELL CLINIC.
THEN AT THE SIX-WEEK POINT WHEN
THEY COME INTO THE CLINIC VISIT
AGAIN IF THEIR PAIN HASN'T
IMPROVED, THEN WHAT WE WERE
DOING IS EITHER RANDOMIZING TO
THE OTHER INTERVENTION OR ADDING
AND OUR CITIZEN SCIENTISTS SAID
IT'S TOO MUCH TO DO
INTERVENTIONS THAT MUCH.
MY LIFE IS SO DIFFICULT AS IT IS
ADDING TWO INTERVENTIONS REALLY
IS GOING TO BE SO MUCH.
TOO MUCH.
SO IN WORK WITH THEM A LITTLE
BIT MORE WE CAME UP WITH THE
FINAL DESIGN SO IF AT SIX WEEKS
WE COME UP WITH THE SAME
INTERVENTION TO SEE IF THERE'S
AN ABILITY TO GET A BETTER
RESPONSE WITH A LARGER DOSE OR
SWITCH TO THE OTHER
INTERVENTION.
THO
THESE ARE A FOCUS ON
PATIENT-ENGAGEMENT AND OUR TWO
DIFFERENT GROUPS OF ADVISORS OR
STAKEHOLDERS HAVE INFORMED THIS
PARTICULAR STUDY AND HOW THIS
HAS BEEN SUCH A MUCH BETTER
PATIENT-FOCUSSED STUDY NOW
BECAUSE OF THE RICH WONDERFUL
INPUT WE HAVE HAD FROM OUR
PATIENTS.
THANK YOU SO MUCH AND I LOOK
FORWARD TO QUESTIONS AND ONGOING
DIALOGUE AFTER THE REST OF OUR
PRESENTATIONS.
>> THANK YOU, LET'S MOVE FORWARD
TO THE NEXT PRESENTATION FROM
LINSEY McKERNAN.
>> GOOD AFTERNOON.
>> SHE'S AN ASSOCIATE PROFESSOR
IN THE DEPARTMENT OF PSYCHIATRY
AND BEHAVIORAL SCIENCE AT
VANDERBILT UNIVERSITY MEDICAL
CENTER.
CLINICALLY, SHE SPECIALIZES IN
TREATING THE INTERSECTION
BETWEEN CO-OCCURRING CHRONIC
HEALTH CONDITIONS AND MENTAL
HEALTH.
HER AREA OF RESEARCH FOCUSES ON
INFORMING TREATMENT AND
INTERVENTION DELIVERY THROUGH
APPLYING PATIENT-INFORMED
APPROACHES TO CARE AND
PATIENT-LEVEL FACTORS THAT
INFLUENCE EXPANDING TREATMENT TO
A WIDER AUDIENCE USING DATA
SCIENCE.
LINSEY, WELCOME.
>> GOOD AFTERNOON, EVERYONE.
LINSEY McKERNAN FROM VANDERBILT
MEDICAL CENTER.
I'M EXCITED TO TALK ABOUT
PERSONALIZING INTERVENTIONS FOR
CHRONIC PAIN PERFECT THE
PSYCHOLOGY PERSPECTIVE.
THERE'S THREE THINGS I WANT TO
TALK ABOUT IN MY TIME.
THE FIRST IS THE OPPORTUNITY WE
HAVE TO ADAPT OUR APPROACHES FOR
PSYCHOLOGICAL EVENTS OF PAIN AND
AN EXAMPLE AT HOW WE WORKED AT
THING WITH POPULATION AND THE
THIRD IS THE CLINICAL
IMPLICATIONS AND WHAT WE'RE
DOING NEXT WITH THE WORK.
LET'S TALK ABOUT EVOLVING
PSYCHOLOGICAL INTERVENTIONS FOR
CHRONIC PAIN.
THERE HAVE BEEN META-ANALYSES
LOOKING AT THE RCTs DONE FOR
PSYCH INTERVENTIONS FOR CHRONIC
PAIN AND HAVE SHOWN AS A WHOLE
THEY MAY HAVE SMALL EFFECTS ON
REDUCING PAIN, DISABILITY AND
DISTRESS.
AND SO RESEARCHERS AND
CLINICIANS BOTH HAVE BEEN ASKING
THE QUESTION WHAT CAN WE DO
DIFFERENTLY OR HOW CAN WE MAKE
THIS BETTER.
AND ONE OF THE LINES OF THINKING
IS WE CAN DO BETTER IN REALLY
ATTENDING TO ALL THE LAYERS THAT
ARE INVOLVED IN A PERSON'S LIFE
THAT ARE AFFECTED BY CHRONIC
PAIN.
IN PARTICULAR, LOOKING AT HOW
THE SPECIFIC TYPE OF PAIN THAT A
PERSON EXPERIENCES MIGHT BE
DIFFERENT FROM ONE TO ANOTHER IN
AFFECTING THESE LAYERS.
FOR EXAMPLE, SOMEBODY WHO HAS
PAIN IN THEIR PELVIS THAT COMES
AND GOES MAY HAVE VERY DIFFERENT
IMPLICATIONS FOR THEIR
RELATIONSHIPS AND THEIR WORK
LIFE THAN SOMEBODY WHO HAS
NEUROPATHIC PAIN IN THEIR HAND
OR SHOULDER.
SO LETS DIG INTO THIS MORE USING
THE UROLOGY AND UROLOGIC PAIN
AROUND HOW THE PAIN CAN DIFFER
BASED ON THE CONDITION YOU HAVE
AND LETS TALK ABOUT
INTERSTITIALCYTIT
INTERSTITIALCYTITIS.
IT'S A CHRONIC PAIN CONDITION
THAT AFFECTS MEN AND WOMEN IN
THE U.S. AND CHARACTERIZED BY
PAIN AND DISCOMFORT AND PRESSURE
IN THE PELVIC REGION.
AND IT'S OFTEN AS A BURNING
PAIN.
IT'S ACCOMPANIED BY URINARY
SYMPTOMS.
A SENSE OF NEEDING TO GO VERY
QUICKLY TO THE BATHROOM AND
AFTER HAVING GONE TO THE
BATHROOM, FEELING LIKE YOU NEED
TO GO AGAIN.
IT'S REFERRED TO AS URINARY
FREQUENCY AND URGENCY.
PEOPLE COMPARE IT TO HAVING A
BLADDER INFECTION THAT NEVER
REALLY GOES AWAY.
AND CAN OFTEN UNPREDICTABLY
INCREASE PERIODICALLY.
AS YOU CAN IMAGINE IF YOU'VE
EVER HAD SOMETHING LIKE THAT IN
YOUR LIFE, HAVING THAT BLADDER
PAIN CAN IMPACT YOUR DAY.
SOMEBODY WITH CONSTANT SYMPTOMS
CAN IMPACT SOMEBODY'S ABILITY TO
WORK, MAINTAIN SOCIAL
RELATIONSHIPS AND THEIR OVERALL
HAPPINESS.
NOT SURPRISINGLY THERE'S A
STRONG PSYCHOLOGICAL OVERLAY
WITH I.C. WHERE ANXIETY,
DEPRESSION AND SUICIDALITY ARE
PRESENT AND WHEN THEY'RE COUPLED
WITH THE CONDITION THEY'RE
ASSOCIATED WITH MORE REDUCED
FUNCTION.
AND THE AMERICAN UROLOGIC
ASSOCIATIONS AND GYNECOLOGISTS
WORK WITH THIS A LOT RECOMMEND
STRESS MANAGEMENT PRACTICES AND
SEL
SELF-MANAGEMENT PRACTICES
HOWEVER, THERE'S A LACK OF
RESEARCH IN THE AREA WHERE THERE
HAVEN'T BEEN AT THE TIME WHEN WE
START THE PROJECT THERE WEREN'T
RANDOMIZED TRIALS ON THE SUBJECT
AND IT'S REALLY AN UNDER USED
SERVICE IN UROLOGY AND WE
WEREN'T SURE PATIENTS WOULD BE
OPEN TO IT BECAUSE THERE'S
STIGMA ASSOCIATED WITH THE
CONDITION WHERE PEOPLE FEEL IF
PSYCHOLOGICAL ASPECT OF THINGS
ARE ATTENDED TO THEIR PAIN WOULD
GO AWAY OR NO LONGER REAL.
SO WE WERE CONCERNED ABOUT WHAT
PATIENTS WOULD THINK ABOUT IT.
SO THERE WEREN'T REALLY ANY
TRANSLATABLE APPROACHES TO
PSYCHOLOGICAL INTERVENTIONS FOR
PATIENTS AND WEREN'T SURE
WHETHER THEY'D BE RECEPTIVE TO
IT.
WE STARTED OUT HERE BY TALKING
WITH PATIENTS.
WE WANTED TO GO TO THE SOURCE
AND TO LEARN ABOUT WHAT PATIENTS
NEEDED AND WOULD THEY BE OPEN TO
THE STYLE OF INTERVENTION SINCE
THERE REALLY WASN'T ANYTHING
THAT HAD YET TO BE DEVELOPED FOR
THEM.
SO THE PCT PROJECT WAS TO LOOK
AT THE TREATMENT NEEDS WITH I.C.
BY TALKING WITH PATIENTS AND ASK
ABOUT THEIR OPENNESS TO, WHAT
THE APPROPRIATENESS WAS OF
PSYCHOLOGY INTERVENTIONS AND
MAKE SURE THAT WE WERE TARGETING
WHAT THEY NEEDED IN THOSE
INTERVENTIONS BECAUSE THAT'S
WHAT OUR PURPOSE WAS.
WE WANTED TO DEVELOP A PROTOCOL
HIGHLY PATIENT CENTRIC.
IT WAS A MIXED METHOD STUDY.
IT HAD A QUALITATIVE ELEMENT TO
IT WHERE WE BROUGHT PEOPLE IN
FOR A SINGLE TIME POINT FOCUS
GROUP AND AT THE BEGINNING OF
THE FOCUS GROUP THEY TOOK A
SERIES OF MEASURES AND WENT
THROUGH A STRUCTURED DISCUSSION
WITH SOME EXPERTS AS WELL.
LET ME TALK ABOUT WHAT'S
INVOLVED IN CONDUCTING THE FOCUS
GROUP.
SO WHEN PEOPLE COME IN,
EVERYBODY'S INDIVIDUALLY
CONSENTED AND IN PARTICULAR
THEY'RE ASKED ABOUT AUDIOTAPING,
INDIVIDUALLY AND THEN AGAIN AS A
GROUP TO MAKE SURE EVERYBODY
AGREES.
AND THE FOCUS GROUP FACILITATOR
GOES OVER WHAT WE'RE DOING, WHAT
THE PURPOSE OF THE STUDY IS AND
THE GROUND RULES FOR THE GROUP
TO MAKE SURE EVERYBODY'S ON
BOARD.
AND THERE'S A PRE-STRUCTURED
INTERVIEW GUIDE WITH TWO
QUALITATIVE EXPERT
COLLABORATORS.
THOSE QUESTIONS ALSO HAD
PROMPTS.
SO IF THE DISCUSSION DIDN'T GET
INTO TOPIC AREAS WE WANTED TO
COVER WE WOULD PROMPT WITH
ADDITIONAL QUESTIONS TO MAKE
SURE TO COVER THAT GROUND.
THE QUESTIONS COVERED THE
PATIENT EXPERIENCE AND THE
DISTRESS THAT WENT ALONG WITH
LIVING WITH I.C.
THEY'RE EXPERIENCE WITH
TREATMENT AND TREATMENT NEEDS
AND OPENNESS TO PSYCHOLOGY
INTERVENTIONS.
HERE'S SOME QUESTIONS WE ASKED
FOLKS ON THE RELATIONSHIP
BETWEEN EMOTIONAL WELLNESS AND
THE I.C.
WHAT WOULD HELP MANAGE THE
SYMPTOMS BETTER AND DID GROUPS
SIX WITH SELF-IDENTIFIED WOMEN
AND SOME WITH MEN AND THAT WAS
SCHEDULED BECAUSE OF THE
SENSITIVE NATURE OF THE THINGS
WE'D BE TALKING ABOUT.
THE THEMES THAT CAME OUT OF
THESE GROUPS, ALL THE
TRANSCRIPTS WERE CODED AND
ANALYZED FOR THEMES AND
SUBTHEMES AND DID THAT FOR THE
OVERALL SAMPLES AND BETWEEN
GENDERS.
THE BURDEN OF MANAGING SYMPTOMS
WAS PRESENT JUST HOW MUCH IT
INFILTRATED TO EVERY ASPECT OF A
PERSON'S LIFE.
IN PARTICULAR THEIR
RELATIONSHIPS FROM COLLEAGUES,
BOSSES, FRIENDS, LOVED ONES AND
INTIMATE RELATIONSHIPS WERE ALL
AFFECTED DIFFERENTLY BY THIS
CONDITION.
THERE'S A LOT OF STATEMENTS HOW
INTIMACY AND SEXUAL DYSFUNCTION
HAPPENED AS A RESULT OF THE I.C.
AND A LOT OF PEOPLE SAYING I.C.
WAS RESPONSIBLE FOR ENDING THEIR
RELATIONSHIPS OR EVEN A BARRIER
TO ENTERING NEW RELATIONSHIPS
OUT OF FEAR.
PAIN CAN OFTEN GET FLARED WITH
SEX IN THIS CONDITION SO IT'S A
MAJOR PROBLEM WITH WOMEN AND MEN
AND THE COGNITIVE BURDEN OF
MANAGING SYMPTOMS.
AND WHAT I THOUGHT AFTER
LISTENING TO THE INTERVIEWS AND
THINKING MORE ABOUT THE IMPACT
IT WAS A DECISION FUNNEL PEOPLE
WENT THROUGH AS THEY WERE ASKED
TO DO SOMETHING DIFFERENT FROM
THEIR REGULAR ACTIVITIES OF
WHERE IS THE BATHROOM EXIT GOING
TO BE?
HOW MUCH TRAVEL TIME AM I GOING
TO HAVE?
HOW WILL I PLAN AROUND A SYMPTOM
FLARE AND WHAT WILL I NEED TO DO
EARLY JUST A QUESTION LIKE THAT
JUST TO GET TOGETHER WITH
FRIENDS AND BECAME OVERWHELMING
AND PEOPLE STARTED TO CHOOSE NOT
TO DO IT BECAUSE THEY DIDN'T
FEEL IT WAS WORTH IT.
IN TERMS OF THE ASSESSMENT WE
FOUND ELEVATED RATES OF ANXIETY
AND DEPRESSION IN MEN AND WOMEN.
THEY WERE ASSOCIATED WITH
INCREASED SYMPTOM SCORES AND A
LITTLE MORE PRONOUNCED FOR
WOMEN.
IN TERMS OF THE BURDEN GOING
BACK TO THE PRIMARY FINDINGS IT
HIGHLIGHTED WITH I.C. CARRYING A
SIGNIFICANT PSYCHOSOCIAL BURDEN
AND ACKNOWLEDGING THE
PSYCHOLOGICAL SYMPTOMS BOTH
INITIATED SYMPTOM FLARES AND
KEEP THEM GOING.
THERE WAS A RECIPROCAL
RELATIONSHIP.
I WAS STRUCK BY THE LACK OF
KNOWLEDGE ON WHAT I.C. WAS.
A LOT OF PATIENTS FELT THEY WERE
NEVER GIVEN EDUCATION AND DIDN'T
UNDERSTAND IT AND BECAUSE OF
THAT IT MADE IT VERY DIFFICULT
TO EXPLAIN TO OTHER PEOPLE WHY
THEY MAY OR MAY NOT BE ABLE TO
DO SOMETHING BECAUSE THEY DIDN'T
FEEL LIKE THEY HAD A FOUNDATION
TO SPEAK FROM.
THERE WAS A GREAT DESIRE FOR
INTERDISCIPLINARY COLLABORATION
IN TREATING I.C. AND HAVING
PSYCHOLOGY AS PART OF THAT.
MANY PATIENTS FELT LIKE THEY
WASHINGTON GETTING ENOUGH FROM
THEIR PROVIDERS.
THEIR TREATMENT WAS DESCRIBED AS
A TRIAL AND ERROR PROCESS AND
MANY FELT LIKE THEY WERE RUNNING
OUT OF OPTIONS.
I'LL TALK ABOUT THE INTERVENTION
DEVELOPMENT AND HOW IT AFFECTS
LAYERS OF A PERSON'S LIFE, IB
PARTICULAR THEIR RELATIONSHIPS
AND ABILITY TO SPEAK UP ABOUT
THE CONDITION AND THEIR MOOD
THEIR SENSE OF RETREAT IN
RESPONSE TO SYMPTOMS AND WE HAVE
THE WHAT WE USUALLY DO IN TERMS
OF THE STANDARD COMPONENTS OF
CBT FOR CHRONIC PAIN AND A
STARTING POINT WHATEVER THE
SESSIONS WOULD BE ABOUT AND
DEVELOPING PROTOCOL AND WHERE WE
LANDED AFTER SPEAKING WITH
PATIENTS.
WE FELT LIKE HAVING MUCH MORE ON
ASSERTIVE COMMUNICATION SKILLS
WOULD BE HELPFUL FOR PATIENTS.
DIRECTLY ADDRESSING IN TTIMACY
FEARS AND APPROACHING INTIMACY
WITH PARTNERS SLOWLY AND
COLLABORATIVELY HELPED ADDRESS
SEXUAL DYSFUNCTION.
THE SLEEP WAS INTERESTING
BECAUSE IT LAD -- HAD TO DO
WITH WAKING UP AND THE SYMPTOMS
HAVE PROTOCOL TO HELP TREAT THEM
THAT AREN'T IN THE CURRENT CBT
FOR INSOMNIA AND TRAIN AND HAD
TO INTEGRATE THOSE AND THE
COGNITION WORKING WITH THE
AUTOMATIC THOUGHTS AROUND PAIN
WAS AROUND THE THOUGHTS OF
PLANNING AND URGENCY AND
PLANNING EXITS, ADDRESSING
THROWS COMPONENT AND THE PSYCHO
EDUCATION WE WANTED TO INCLUDE
PAID NEUROSCIENCE EDUCATION AS
DONE WITH I.C. SPECIFIC DETAILS
AND THE CONDITION AND THE
PHENOTYPES TO GIVE PEOPLE
LANGUAGE TO EXPLAIN IT TO THEIR
LOVED ONES AND THE NEEDS MAY
VARY BASED ON GENDER AND TELL
YOU HOW IN A SECOND.
IN TERMS OF WHAT WE'VE DOING IN
RESEARCH, WE PUT THE MANUAL
TOGETHER OVER THE COURSE OF
ABOUT A YEAR.
AND WE BUILT IN FLEXIBILITY INTO
TREATMENT.
SO ONE PERSON MIGHT HAVE CERTAIN
ISSUES DRIVING THEIR NEED FOR
TREATMENT VERSUS ANOTHER IT
COULD BE THEIR EMOTIONAL COPING
STYLE AND THE OTHERS IS THE
STRESS IS BOTHERING THEM AND
THIS WAS BUILT SO TREATMENT
SESSIONS COULD BE ORDERED BASED
ON PATIENT GOALS AND THE SKILLS
COULD BE DIRECTED TO WHAT THEIR
EMOTIONAL NEEDS WERE.
THERE WAS A GREAT DEAL OF
ATRAUMA AWARENESS AND EDUCATION
BECAUSE OF THE HIGH PREVALENCE
OF TRAUMA AND PTSD IN THE
POPULATION AND WE ALSO HAVE
ASSERTIVE COMMUNICATION AND
DYSFUNCTION MODELS BUT WE TOOK
IT BACK TO THE PATIENT
POPULATION AFTER WE BUILT IT AND
IN A FINAL FOCUS AND REVIEWED
THE MANUAL, THE HANDOUTS AND THE
TOPICS AND THE ABILITY TO SHIFT
AROUND THE SEQUENCING.
PEOPLE FELT THE CONTENT WAS
RELEVANT AND GOT FEEDBACK ON
THINGS TO CHANGE ON OUR
HANDOUTS.
WE CHANGED IT BEFORE GOING LIVE.
IS THIS HAS BEEN PILOTED IN THE
CLINICAL TRIALS WHERE WE LOOK AT
THE INTERVENTION VERSUS THE
EIGHT-WEEK CONTROL AND WE'RE
TRYING TO FIND OUT WHAT THE
INTERVENTION EFFECT MIGHT BE IN
ORDER TO DO THIS ON A BIGGER
SCALE.
WITH THE OVERALL GOAL DOING THIS
ON A WIDER SCALE.
I CAN TALK MORE ABOUT THIS IN
THE Q&A IF IT'S OF INTEREST.
ANOTHER AREA WE'RE WORKING ON IS
IN THE CLINIC SIDE OF
INTEGRATING PSYCHOLOGY AND
UROLOGY SERVICES AND WE FOUND A
WAY TO DO THIS AND ALSO BUILD IN
TRAINEE SERVICE TO AN
INTERDISCIPLINARY CLINIC WHICH
I'M EXCITED ABOUT AND I CAN TALK
MORE ABOUT THIS IF THERE'S
INTEREST.
THE LESSONED WE LEARNED ARE TO
ENGAGE STAKEHOLDERS FROM THE
BEGINNING THROUGH BECAUSE WE
KEPT LEARNING AS WE WERE GOING
AND UNCOVERED ASSUMPTIONS ABOUT
THE EDUCATION PIECE AND OTHER
NEEDS THAT WERE THERE WE COULD
HAVE MISSED OTHERWISE.
IT CHANGED OUR AREAS OF EMPHASIS
AND IMPORTANTLY FOUND OUT
THROUGH LEARNING ABOUT THE
LAYERS OF HOW IT AFFECT THE
WHOLE PERSON OTHER OPPORTUNITIES
FOR INTERVENTION WE MAY NOT HAVE
OTHERWISE INCLUDED PARTICULARLY
AROUND RELATIONSHIPS WITH LOVED
ONES, INTIMACY AND HEALTH CARE
SYSTEM.
I'M INVESTED IN INCREASING
SERVICES THROUGH UROLOGY.
IT'S A NEW AREA AND THERE'S A
GREAT DEAL OF INTEREST AND
EXCITEMENT AROUND IT.
PART IS EXPANDING TRAUMA
AWARENESS AND TRAUMA CARE
PROCEEDING.
SO HAPPY TO TALK MORE ABOUT THIS
AND THANK YOU ALL FOR HAVING ME
TODAY.
>> THANK YOU.
OUR LAST SPEAKER IS DR. WALLY
SMITH FROM VIRGINIA COMMONWEALTH
UNIVERSITY.
HE IS A PROFESSOR OF THE SICKLE
CELL PROGRAM AND SERVES AS THE
SCIENTIFIC DIRECTOR OF THE VCU
CENTER OF HEALTH DISPARITIES.
DR. SMITH'S AREA OF RESEARCH IS
BARRIERS AND IMPLEMENTATION OF
WLOEL-PERSON APPROACHES TO PAIN
MANAGEMENT AND THEY LOOKED AT
THE STRATEGY.
HIS PRESENTATION THE TOPIC IS
BARRIERS TO IMPLEMENTATION OF
WHOLE PERSON APPROACHES TO PAIN
MANAGEMENT.
THANK YOU FOR SHARING YOUR
EXPERTISE WITH US.
THE FLOOR IS YOURS.
>> THANK YOU FOR SETTING UP WHAT
I'M GOWHOLE GOING TO SAY.
I'LL TALK ABOUT MY VIEW AND THE
BARRIERS TO THEIME IMPLEMENTATI
OF THE WHOLE PERSON APPROACH TO
PAIN MANAGEMENT WE HEARD ABOUT
IN THE LAST TWO DAYS.
WE HAVE AN EPIDEMIC OVERUSE
MISUSE OR DEATH ACCIDENTAL OR
OTHERWISE AND THIS GOES BACK TO
2014.
IT'S CAUSED THE GOVERNMENT TO
JUMP INTO HIGH GEAR TO STEM THE
TIDE OF LETHAL OPIOID USE AND
WHAT'S CAUSING DEATHS AND MORE
DEATHS NOW THAN MOTOR VEHICLE
ACCIDENTS ANNUALLY.
AT FIRST THE DEATHS WERE FROM
PRESCRIPTION OPIOID USE BUT NOW
WE KNOW THE LATEST EPIDEMIC OF
DEATH IS FROM MANUFACTURED OR
SYNTHETIC OPIOIDS BUT THE
PROBLEM STILL LINGERS IN THE
MIND OF PRACTITIONERS AND THE
GOVERNMENT.
SIMULTANEOUS TO THE FIRST
EPIDEMIC WE HAVE A SECOND THAT
OF CHRONIC PAIN, 14.6% OF
U.S. ADULTS HAVE CURRENT
WIDESPREAD OR LOCALIZED PAIN
LASTING FOR AT LEAST THREE
MONTHS.
WE'RE NOT TALKING ABOUT CANCER
PAIN, WE'RE TALKING ABOUT
NON-CANCER PAIN.
IN RESPONSE TO THIS TWIN
EPIDEMIC, WE HAVE THE NIH HEAL
INITIATIVE WHICH IS OUT NOT ONLY
TO HELP END ADDICTION LONG-TERM
WHICH IS ENCODED IN THE NAME,
HEAL, BUT ALSO TO HELP STEM
CHRONIC PAIN.
WHAT WE'VE LEARNED FROM HEAL AND
FROM THE LAST TO DAYS IS THERE'S
A LOT OF PAIN THERAPIES OUT
THERE.
EVEN SOME WILLING PAIN PROVIDERS
BUT NOT A LOT OF IMPLEMENTATION
TO GET THE APPROPRIATE PAIN
THERAPIES INTO THE HANDS OF THE
PATIENTS WHO NEED THEM MOST.
SO ON THIS SLIDE WOULDN'T YOU
KNOW IT, THE PROBLEM HAS NOW
BEEN BROUGHT TO THE FOREFRONT BY
OUR FRIENDS AT THE CENTERS FOR
MEDICARE AND MEDICAID SERVICES
WHICH JUST WEEKS AGO PUBLISHED
THIS TELLING PICTURE.
IT'S WORTH 1,000 WORDS AND I'LL
ONLY GIVE YOU 750 TODAY AND SHOW
YOU DIFFERENT PARTS OF THIS
PICTURE OVER AND OVER AN THIS IS
FOCUSSED ON THOSE LIVING WITH
AND TREATING CHRONIC PAIN.
IT WAS INTENDED TO HIGHLIGHT
BARRIERS ABOUT PEOPLE ACCESSING
CARE AND THE INFLUENCES ACTING
ON THE PROVIDERS AND QUALITY OF
QUAR AND LIFE.
AS SOMEONE ON THE DESCRIBING
GUIDE LINES AND THE GROUP ON THE
HEAL INITIATIVE I WELCOME THIS
PICTURE.
CENTRAL TO THE PROBLEM OF
MANAGING CHRONIC PAIN IS THE
MISTRUST CREATED BY THE
ATMOSPHERE OF THE TWIN EPIDEMICS
I JUST DESCRIBED.
SO CLINICIANS WANT TO KNOW CAN I
TRUST THE PATIENT TO HAVE THE
PAIN THEY SAY THEY HAVE AND
PATIENTS WANT TO KNOW CAIN TRUST
THE CLINICIAN IN FRONT OF ME TO
GIVE THE ME OPIOIDS OR
INTEGRATIVE MEDICINES I NEED?
WE HAVE LOTS OF EVIDENCE TO IS A
NO.
I CANNOT TRUST THE PATIENT OR DO
NOT TRUST THE PATIENT.
WE HAVE LOTS EVIDENCE TO SAY,
NO.
I CANNOT TRUST OUR DO NOT TRUST
THE CLINICIAN.
THEY DON'T BELIEVE THE PATIENTS
HAVE SPAIN.
THE NURSES ARE SOMETIMES WORSE
THAN THE PHYSICIANS IN NOT
BELIEVING PATIENTS WHEN THEY SAY
THEY'RE IN PAIN.
THERE'S OFTEN NO OBJECTIVE
CORRELATE TO THE CHRONIC PAIN
AND THERE'S A DISPUTE ABOUT
WHO'S RIGHT ESPECIALLY IN THE
EMERGENCY DEPARTMENT AND
HOSPITAL.
ANOTHER PROBLEM IS SCARCE
RESOURCES.
COMPLEMENTARY AND INTEGRATIVE
CARE IS WE DON'T THINK OF HAVING
THE NEED FOR TRANS DISCIPLINARY
BIO/SOCIAL CARE FOR THERAPY.
MOST HAVE JUST A CANCER DOCTOR
WITH CANCER AND PEOPLE WITH
RHEUMATOLOGY DISEASES JUST HAVE
A RHEUMATOLOGIST.
THESE DOCTORS MAY FEEL TRAPPED
INTO MANAGING THE PATIENT'S PAIN
ESPECIALLY WHEN IT COMES TO
DESCRIBING OPIOIDS BECAUSE THEY
DIDN'T TRAIN FOR THAT.
IF THEY'RE LUCKY MAYBE THE
PATIENT HAS A BEHAVIORAL
THERAPIST BUT THE DISEASE
THERAPISTS DON'T FEEL EQUIPPED
TO PROVIDE CARE FOR CO-OCCURRING
SUBSTANCE USE, MENTAL HEALTH
DISORDER, OTHER BEHAVIORAL
DISORDERS MOST PATIENTS BRING
WITH THEM INTO THE
DISEASE-SPECIFIC PROVIDERS
OFFICES.
SO THE PATIENTS END UP WITHOUT
THE SUPPORT TEAM THEY NEED.
THEY BURDENED WITH DAY TO DAY
TASKS OF MANAGING THEIR LIFE AS
A PATIENT, BEARING THE PAIN FROM
THEIR FAMILY, FAMILY AND FRIENDS
WHO DON'T BELIEVE THEIR PAIN.
THEY ALSO BEAR A FINANCIAL
BURDEN BECAUSE THEY DIDN'T WORK
BECAUSE OF THEIR PAIN EPISODES.
THEY CAN BE DEPRESSED, ANXIOUS
AND MAY RESORT TO
CATASTROPHIZING AND PATIENTS
DON'T GET THE SUPPORT FROM
PROFESSIONAL CAREGIVERS OR HOME
CAREGIVERS.
YOU SEE THE BOTTOM OF THE
PICTURE, PATIENTS ARE LOST IN
THE MIDDLE.
WE HEAR TESTIMONIALS ABOUT
PATIENTS FEELING LOST AND
WEIGHED DOWN WITH THE CHRONIC
PAIN EXPERIENCE.
PAIN IS INDEED ITS OWN DISEASE.
PATIENTS MAY ALSO BE HEALTH
ILLITERATE.
SO THEY CAN'T TELL THE
DIFFERENCE BETWEEN TOLERANCE
VERSUS PHYSICAL DEPENDENCE
VERSUS ADDICTION.
THE THINK OF IT AS PHYSICAL
WITHDRAWAL AND WHEN THEY THINK
OF PAIN THEY CAN'T SAY WHOLE
HAVING NOCICEPTIVE PAIN TREAT ME
WITH A DISEASE MODIFIER OR I
NEED A
>> YOUNT ---AGE A
ADJUVANTS AND PERHAPS THEY'RE
PRONE TO BELIEVE PAIN MEANS AN
ANALGESIC DEFICIENCY.
THEY NEED PROVIDERS TO GIVE THEM
COLLABORATION AND THE
APPROPRIATE TREATMENT INCLUDING
MEDICATION, THEY NEED, AND NEED
TO UNDERSTAND THEY CAN MAKE A
PATIENT-CENTERED DECISION
PROCESS.
YOU CAN SEE THERE'S A LOGISTICAL
ACCESS TO THAT KIND OF SUPPORTER
IS ABOUT TO BREAK.
INSURANCE DOES NOT COVER MUCH OF
THE PAIN CARE PATIENTS NEED.
COMPLIMENTARY AND INTEGRATIVE
CARE PARTICULARLY ARE NOT
COVERED.
AND MENTAL HEALTH DISORDER
PATIENTS ARE OFTEN NOT FINDING
COVERAGE.
PATIENTS MAY CHANGE INSURANCE
POLICIES TRYING TO GET THAT KIND
OF COVERAGE OR TRYING TO REDUCE
THEIR DEDUCTIBLE.
YOU CAN SEE THE PERSON ON THE
RIGHT CLIEPING UP THIS STEEP
MOUNTAIN LOOKING FOR COVERAGE
AND FEELING NOT ABLE TO GET THE
COVERAGE THEY NEED.
HOW ABOUT PRIOR AUTHORIZATIONS.
WHAT A CUSS WORD.
WHEN IT COMES TO OPIOIDS, YOU
HAVE TO HAVE A PRIOR
AUTHORIZATION FOR THE USE OF
CERTAIN OPIOIDS AND THEN YOU MAY
NEED A SECOND PRIOR
AUTHORIZATION TO GET THE
QUANTITY.
IN OUR EXPERIENCE THAT'S TWO
DIFFERENT CALLS FOR TWO
DIFFERENT PRE-AUTHORIZATION
APPROVALS FROM THE SAME
INSURANCE COMPANY IN THE SAME
EPISODE OF CARE?
WHAT PROVIDER WANTS TO TAKE CARE
OF PATIENTS IN PAIN EVERY DAY
ASKING FOR RELIEF EVERY DAY?
YOU'RE NOT ABLE TO CURE THEM OF
THEIR PAIN AND THEN YOU AS A
PROVIDER FEEL INADEQUATE OR
INEFFECTIVE.
WANT TO PUNT.
THAT'S SHOWN ON THE RIGHT SIDE
OF THE SLIDE.
SOME PROVIDERS OPT-OUT.
THEY REFER IF THE INITIAL TRIAL
DOESN'T WORK OR IF THE PATIENTS
GIVE INDICATION THEY'RE MISUSING
THE OPIOIDS, SOME PROVIDERS WHO
FORMALLY PROVIDED OPIOIDS OR
TREATED PAINS PUT SIGNS UP IN
THE WAITING ROOMS OF THEIR
OFFICES SAYING, NO OPIOIDS
PROSCRIBED HERE OR WE DON'T DO
PAIN MANAGEMENT HERE.
SO IF YOU HAVE PAIN, TURN AROUND
AND GO THE OTHER WAY.
THE ATTITUDES OF THESE KINDS OF
PROVIDERS HAS BEEN HEAVILY
MOTIVATED BY FEAR.
FEAR OF LOSING OUR LICENSE.
FEAR OF BEING PROSECUTED FOR
BEING A PILL MILL.
PILL MILL REAL BUT FOR EVERY
PILL MILL THERE'S 10 TO 20
PROVIDERS WHO GOT OUT OF THE
OPIOID PROSCRIBING AND PAIN GAME
BECAUSE SIMPLY THEY THOUGHT
THEY'D BE PERCEIVED AS A PILL
MILL.
SOME OF THE FEAR'S BEEN BROUGHT
ON BY AN INAPPROPRIATE RESPONSE
AND APPLICATION OF THE 2016
OPIOID PRESCRIBING GUIDELINE.
THE GENERAL RESPONSE WAS
ENHANCED OPIATE PHOBIA.
THERE AROSE TWO CAMPS.
ONE SAYING WE USE TOO MANY
OPIOID AND ONE SAYING WE USE TOO
FEW.
THAT BECAME THE CENTRAL
ARGUMENT.
INSTEAD THE ARGUMENT SHOULD BE,
WE'RE NOT TRAINED TO CARE FOR
PAIN.
I ONLY GOT ONE HOUR IN PAIN
MANAGEMENT IN MEDICAL SCHOOL.
I NEEDED MORE.
UNFORTUNATELY WE'RE DEALING WITH
RACISM AND IMPLICIT BIAS ON TOP
OF EVERYTHING ELSE COMPLICATING.
AFRICAN AMERICANS ARE GETTING
LESS PAIN MANAGEMENT FOR SIMILAR
PRESENTATIONS IN EMERGENCY
DEPARTMENTS ESPECIALLY AND IF
THE SUBJECTIVE PAIN IS DIFFICULT
TO CORRELATE OBJECTIVELY WITH
BIOMARKERS OF PHYSICAL SIGNS,
PATIENTS ARE GETTING BELIEVED
LESS OFTEN AND BEING UNDER
TREATED.
SO WHAT ABOUT STRATEGIES?
ARE THERE STRATEGY TO COMBAT
THIS PROBLEM?
WE CONDUCTING A SICKLE CELL
DISEASE WORKSHOP CALLING FOR
APPROACHES TO THERAPEUTIC
MANAGEMENT OF PAIN FOR PEOPLE
WITH SICKLE CELL DISEASE.
THE MANAGEMENT ROUNDTABLE ASKED
THIS QUESTION, WHAT SUCCESSFUL
STRATEGIES FROM OTHER FIELDS CAN
BE EVALUATED IN TRIALS TO
ADDRESS STIGMA, ENHANCE ACCESS
TO HIGH QUALITY CARE OR OVERCOME
STRUCTURAL BARRIERS TO ACUTE AND
CHRONIC PAIN MANAGEMENT.
THE STRATEGIES INCLUDED
CROSS-COLLABORATIVE TEAMS FOR
SPECIFIC STRATEGIES.
SECOND, STRATEGIES INCLUDED
PARTNERING WITH COMMUNITY-BASED
ORGANIZATIONS.
THERE ARE A LOT OF COMMUNITY
ASSETS AND COMMUNITY CAPITAL
THAT ARE UNDER UTILIZED FOR
AUGMENTING PAIN MANAGEMENT AND
SUPPORT.
THIRD, IF THE PATIENT CENTER
BELIEVED THEM UNLESS THEY GIVE
YOU A GOOD OBJECTIVE REASON NOT
TO, FOUR, BE EMPATHETIC.
DON'T USE LANGUAGE LIKE SICKLER
BUT REFER TO PATIENTS WITH
LIVING WITH SICKLE CELL DISEASE.
LANGUAGE MATTERS FOR REMOVING I
AM PLIS -- IMPLICIT BIAS AND
TRUST.
ADVOCATE WITH YOU.
HAVE A PAIN ADVISORY COUNCIL IN
YOUR HOSPITAL.
THE CONSENSUS WAS
PROVIDER-FACING EDUCATION IS
IMPORTANT TO MOVE THE PAIN
TREATMENT FIELD ALONG BECAUSE WE
DIDN'T GET IT IN MEDICAL SCHOOL
OR PHARMACY SCHOOL OR NURSING
SCHOOL AND NOW WE HAVE TO GET
IT.
WE HAVE TO BECOME AWARE OF OUR
OWN BIASES AND GET SOME SKILLS.
FOR EXAMPLE, ONE TRAINING METHOD
OF DOING THAT IS VIRTUAL
REALITY.
THERE'S CERTAINLY OTHERS.
WHERE THERE'S FIELDS THIS IS
HAPPENING, THE BELIEF WAS WE
SHOULD ADOPT THEM.
FOR EXAMPLE, IN THE HIV AND AIDS
FIELD THIS IS HAPPENING.
CERTAINLY IN THE CANCER FIELD
AND IN THE SUBSTANCE ABUSE
FIELD, IT'S HAPPENING.
A SIMILAR QUESTION AND THE ONE I
WRESTLE WITH IS WHAT ARE
BARRIERS TO THE ADOPTION,
ADAPTATION, INTEGRATION AND
SCALE-UP AND SUSTAINABILITY OF
WHOLE A PERPERSON APPROACHES TO.
I DON'T THINK IT'S TOO MUCH OF A
STRETCH TO SAY FOR ALL OF
CHRONIC PAIN THERE WERE ISSUES
THAT PROVIDERS UNIFORMLY
ENDORSED.
YOU CAN SEE BY THE NUMBER OF Xs
ACROSS WHICH CATEGORIES GOT THE
MOST ENDORSEMENTS.
POOR ACCESS TO PROVIDERS, TOO
POORLY TRAINED PROVIDERS.
POOR MEASURES AND RESEARCH
DATABASES AND FOLLOWED BY
RACISM.
SIMILARLY YOU CAN SEE PROVIDERS
AGREED WITH WHAT A SAID ABOUT
THE PROBLEMS.
WHOLE GLAD TO ANNOUNCE WE HAVE
HEAL INITIATIVE FUNDING
OPPORTUNITY ANNOUNCEMENTS COMING
OUT THAT DEAL WITH PAIN ON A
MULTI-LEVEL BIO PSYCHOSOCIAL
MULTI DISCIPLINARY BASIS AND A
HOPE WE'LL SEE PROGRAMS THAT
DEMONSTRATE APPROACH TO PAIN
THAT OVERCOME THESE BARRIERS.
SO WE'RE BACK TO WHERE WE START.
YOU CAN PERHAPS LOOK AT THE
CHRONIC PAIN EXPERIENCE WITH NEW
EYES AND A NEW FOCUS.
WHERE IN THE PICTURE ARE YOU?
WHERE IS YOUR PATIENT IN THEIR
PICTURE.
WHERE ARE YOU AND YOUR PATIENT
ADVOCATE DIAD?
WHERE ARE YOU?
WHAT CAN YOU DO TO MAKE THE
CHRONIC PAIN EXPERIENCE IN THE
UNITED STATES ONE THAT IS MORE
ACCEPTABLE AND EQUITABLE AND
FAIR FOR THE PATIENT.
WHAT CAN YOU DO TO TAKE THE
FOCUS OFF OPIOIDS YES VERSUS NO
AND PUT IT ON LESS PAIN, ON THE
ORGANISM AS DR. GAUDET SAID
YESTERDAY.
I THANK YOU FOR YOUR TIME AND
LOOKING FORWARD TO THE QUESTION
AND ANSWER PERIOD.
>> THANK YOU, DR. SMITH.
WE ARE ABOUT FIVE OR SIX MINUTES
BEHIND THE SCHEDULE.
LET'S MOVE TO THE SECOND HALF OF
THE IF HE QUESTION, Q&A AND
PANEL DISCUSSION.
IT'S MY GREAT PLEASURE TO
INTRODUCE COLLEAGUES AND FRIENDS
FROM THE NIH INTRAMURAL
COMMUNITY.
WE HAVE A FACILITATOR AND IS IN
THE DIVISION OF INTRAMURAL
RESEARCH OF CENTER OF
COMPLIMENTARY AND INTEGRATIVE
HEALTH.
MISHA'S CLINICAL AND RESEARCH
INTEREST HAS BEEN RELATED TO
PAIN INCLUDING NEUROLOGICAL
DISORDERS AND CONDUCTS
RANDOMIZED CLINICAL TRIALS.
OUR LEAD DISCUSSANT IS DR. KAREN
SEAL FROM UCSF.
A PREVENTION OF MEDICINE AND
PSYCHIATRY IN RESIDENCE AT UCSF
AND CHIEF OF INTEGRATIVE HEALTH
SERVICES OF THE SAN FRANCISCO
BAY HEALTH CARE SYSTEM.
DR. SEAL HAS PARTICULAR INTEREST
IN DEVELOPING AND TESTING NEW
MODELS OF CARE TO PROMOTE
NON-PHARMACOLOGIC MEASUREMENTS
OF CHRONIC PAIN AND PAIN
COMORBIDITIES AND CONDUCTING THE
MULTI-SITE CLINICAL TRIAL TO
LOOK AT THE EFFECTIVENESS OF A
WHOLE HEALTH TEAM APPROACH TO
CHRONIC PAIN CARE.
MISHA, SO HOW ABOUT WE START
WITH QUESTIONS IN THE CHAT BOX
FOR THE SPEAKERS.
AND ALSO I SAW A QUESTION FROM
THE PANELISTS OR SPEAKERS.
I'LL LET YOU TAKE THE FLOOR.
>> THANK YOU.
BEFORE I GO TO QUESTIONS, I'LL
TAKE A MINUTE TO SUMMARIZE AT
LEAST FOR US TO REFLECT ON THE
TOPIC OF TODAY'S SESSION WHICH
IS IMPLEMENTING WHOLE PERSON
CARE.
AND WE HAD ON YESTERDAY AND GOOD
TALK TODAY EXCELLENT REVIEW WHAT
THE CONCEPTS THAT CONSTITUTE
WHOLE PERSON CARE AND THAT
CLEARLY PROVIDERS -- PROVIDES
IMPORTANCE AND REFLECTION AND
EXPERIENCE AND DEMONSTRATE HOW A
CURRENT SYSTEM IS FAR FROM
WHAT'S NEEDED TO DELIVER WHAT
WOULD BE CONSIDERED OPTIMAL CARE
WHICH IS WHOLE PERSON CARE.
THE PROBLEM IS REFLECTS IN PART
WITH DR. SMITH'S SUMMARY OF THE
SYSTEM THAT STANDS IN THE WAY
AND THIS IS IN COMMENTS
REFLECTING THE FACT THAT OUR
CURRENT HEALTH CARE SYSTEM
DELIVERY IS FAR FROM CONDUCIVE
TO WHOLE SYSTEM CARE.
I'LL TAKE THE PREROGATIVE TO ASK
A COUPLE PANELISTS, DR. McKERNAN
MENTIO
MENTIONED AND WHAT IS BEING
TAUGHT AND THOSE MENTIONED TODAY
AND MULTI DISCIPLINARY PAIN
CLINICS AND COMING FROM PRACTICE
IN MULTIDISCIPLINARY CARE.
PATIENTS ARE ALWAYS GIVEN A LIST
OF THINGS TO DO AND LOOKS
OVERWHELMING TO THE PATIENT.
THIS IS DISAPPOINTING TO WHOLE
PERSON CARE.
AND GOING FROM MULTIDISCIPLINARY
TO INTRADISCIPLINARY CARE AND
FOLLOW-UP WITH DR. SMITH
REGARDING THE COMMENT WHY AND
NOW IT'S A MODEL TO DELIVER
WHOLE PERSON CARE.
>> SURE.
THANK YOU FOR THE QUESTION.
I'D BE HAPPY TO TALK ABOUT OUR
I.C. CLINIC.
IT'S BEEN RUNNING FIVE OR SIX
YEARS AND START ED AS A CONGRES
ROOTS EFFORT WITH MYSELF, A
NURSE PRACTITIONER AND SURGEON
WHO WANTED TO DO MORE FOR THESE
PATIENTS.
THE WAY I STRUCTURE IT IS I RUN
DUEL SULT -- CONSULTS WITH THE
NURSE AND WE TRY TO SAVE THEM
TIME REPEATING THE STORY AND
MAKE RECOMMENDATIONS TOGETHER ON
WHAT WE THINK THE TREATMENT PLAN
OUGHT TO BE AND THE NURSE
PRACTITIONER MAY NEED TO GO NOT
NEXT ROOM AND I MAY STAY AND
WORK OUT SOMETHING SPECIFIC WITH
THAT PERSON AND SCHEDULE SOME
BRIEF FOLLOW-UPS WITH THEM.
I WISH ALWAYS WE COULD DO MORE
SO IT'S A SHORT PERIOD OF
TREATMENT AND WHEN THEY COME
BACK TO THEIR RETURN VISITS THEY
SEE US BOTH AGAIN.
SO OVER TIME WE INCLUDED AND
EXPANDED THE CLINIC TO INCLUDE
TRAINEES.
THAT'S WONDERFUL BECAUSE IT
ALLOWS US TO HAVE MORE PSYCH
PSYCHOLOGICAL TRAINING AND
THERE'S THINGS IN UROLOGY DONE
AS AN OUT PATIENT AND WE RUN AN
ONLINE GROUND HELPING PEOPLE
LEARN RELAXATION STRATEGIES TO
MAKE THEM BETTER.
IF YOU HELP BUILD IT IT WILL
GROW AND THE FEEDBACK WE'VE
GOTTEN FROM PATIENTS IS
WONDERFUL ON IT.
>> WE HAVE TO GO TO COMMUNITIES
AND SPREAD THE WORD.
HOW DOES THIS TRANSLATE TO DO
MORE IN THIS CASE?
>> I FEEL LIKE THE POLY CLINIC
IS THE ANSWER WHERE AS THE CASE
DISCUSSION AND YOU SEE THE
PATIENT AND A TREATMENT PLAN IS
RENDERED AFTER YOU SEE THE
PATIENT AND THE TEAM COMES UP
WITH A TREATMENT PLAN.
THERE'S DEBATE AMONG MEMBERS OF
THE TEAM ABOUT WHAT IS BEST TO
TRY AND WE COME TO A UNIFORM
AGREEMENT ABOUT A TARGET ED
PERHAPS TRIAL AND ERROR TO
MANAGE CHRONIC PAIN.
WE DON'T KNOW WHAT WE'RE DOING A
LOT OF THE TIMES.
THE PATIENTS CAN'T TELL US
WHAT'S WRONG WITH THEM A LOT OF
THE TIMES.
THESE TEAM MEMBERS CAN HAVE
THEIR THEORIES ON WHAT SHOULD BE
DONE BUT WE TRY TO HAVE A JOINT
PROGRAM AND WE TRY TO WRITE IT
DOWN AND NOT ALWAYS DONE BUT TRY
TO HAVE AN INDIVIDUALIZED
TREATMENT PLAN LIKE AN ASTHMA
TEAM THE PSYCHOLOGISTS AND ALL
INVOLVED ARE THE PAIN MANGERS.
WE DON'T REFER TO PAIN
MANAGEMENT FOR OUR PATIENTS.
A THESE MANAGER HAS TO BE A PAIN
MANGER FOR DISEASES THAT ARE
PAINFUL AND YOU CAN'T ESCAPE THE
TRAINING YOU NEED TO HAVE A TEAM
AROUND BUT YOU ARE THE CAPTAIN
OF YOUR TEAM BECAUSE YOU KNOW
THE DISEASE.
WE HAVE WAYS OF WHOLE PERSON
CARE AND AGAIN THERE WAS A
REFERENCE TO THE DOD SYSTEM AS
WELL.
LET'S GO TO SOME SPECIFIC
PORTIONS.
THERE WERE SPECIFIC TO LINSEY
McKERNAN.
MADE REFERENCE TO THE MANUAL.
IS IT AVAILABLE?
>> IT WILL BE AT THE END OF THE
STUDY.
WE'RE IN OUR LAST YEAR.
I'D BE HAPPY TO SHARE THE FULL
MANUAL AND PATIENT MANUAL AND
DROP MY E-MAIL IN THE CHAT.
IT'S FOR CLINICIANS I CAN SHARE
IT WITH.
>> AND ALSO FOLLOW-UP THE
QUESTION ALSO RESOURCES THE I.C.
SUPPORT GROUP INFORMATION AS
WELL.
THAT ONE IS RUN THROUGH OUR
MEDICAL CENTER BUT IF YOU'RE A
REGISTERED PATIENT YOU CAN
ALWAYS JOIN IT.
I'LL SHARE THAT TOO.
THERE'S A QUESTION TO WALLY
SMITH, ISN'T A MAJOR PROBLEM
THERE'S A FOCUS ON SUBSTANCE
ABUSE AND THE ADDICTION SHOULD
BE THE SECONDARY CONCERN FOR
THOSE WITH SIGNIFICANT PAIN.
ANY COMMENT?
>> THERE'S AN EXCESSIVE FOCUS ON
SUBSTANCE ABUSE BROUGHT ON BY
THE ALARMING STATISTICS BY THE
FIRST EPIDEMIC I TALKED ABOUT.
THE CHRONIC PAIN EPIDEMIC IS
SIL
SILENT.
WE DON'T KNOW IT'S KILLING
PEOPLE OR SEE THE STATS.
THE OPIOID MISUSE AND EPIDEMIC
IS ON THE FRONT PAGES.
IT'S ON THE PRESIDENT'S CAMPAIGN
PLATFORM.
IT'S NOT SUBTLE.
WE FORGOT IT'S NOT LONGER
PRESCRIPTION OPIOIDS BUT
SYNTHETIC OPIOIDS DRIVING THE
EPIDEMIC.
SO WE HAVE A CONDITION THAT OUR
PRESCRIBING IS KILLING PATIENTS.
MANAGING SOMEBODY WITH
CO-EXISTING SUBSTANCE USE IS ONE
OF THE KEY OPERATING
DIFFICULTIES WITHIN THE HEAL
INITIATIVE PUTTING FOAs OUT FOR
MANAGING THOSE PATIENTS IS A
TEAM EFFORT.
I DIDN'T KNOW ABOUT THIS BUT I
DO NOW BECAUSE WHOLE STILL
MANAGING PATIENTS WITH
CO-EXISTING ADDICTION WITH MORE
PATIENT EDUCATION AND THERE IS
CO-EXISTING SUBSTANCE USE WITH
CHRONIC PAIN AND WE HAVE TO DEAL
WITH IT.
AS WE GO FORWARD I HOPE WE GET
PREVALENCE ESTIMATES ABOUT THAT
SO WE UNDERSTAND THAT MOST
PEOPLE WITH CHRONIC PAIN DO NOT
HAVE CO-EXISTING SUBSTANCE USE.
THAT WILL HELP AND I HOPE TO
SHOW JUST BECAUSE YOU DO HAVE
IT, DOESN'T MEAN YOU DON'T TREAT
THE CHRONIC PAIN OR ACUTE PAIN.
IS
>> IF OTHER SPEAKERS WOULDN'T
MIND ADDRESSING THIS.
MAYBE DR. DOORENBOOS IF THERE
WAS ANYTHING IN YOUR RESEARCH OR
GIVE REFLECTIONS ON THE TOPIC.
IT'S THIS INTERSECTION THAT
FAC
FACES MANY PATIENTS.
>> WHAT I HEARD IS SPOT ON.
HAVING HAVING THE MULTI
DISCIPLINARY TEAM AND HAVING TO
HAVE THE BACKGROUND IN ADDICTION
MEDICINE TO PARTNER WITH AND SO
WE'RE ABLE TO CO-SEE PATIENTS
WHO HAVE SOME OF THESE ISSUES SO
THE INTERDISCIPLINARY APPROACHES
I THINK ARE VERY IMPORTANT.
AND I THINK IT IS SOMETHING THAT
WILL HAVE TO CONTINUE DEALING
WITH GOING FORWARD.
>> YOU SPOKE ABOUT AN
INTERACTION THAT WAS NOT KIND
AND NOT HOW WE TEACH NURSING
STUDENTS TO COMMUNICATE WITH
PATIENTS.
THIS IS A QUESTION THAT I DON'T
KNOW IF YOU HAVE COMMENTS ABOUT
WHAT THEY TALKED OTHERWISE I
HAVE ONE MORE QUESTION FOR YOU.
>> THE ONLY THING -- THE ONE
THING THAT SURPRISED ME WAS THE
PERSON THAT MADE THAT COMMENT
WAS A PERSON OF COLOR.
JUST THINKING ABOUT IT RIGHT
NOW, WHOLE STILL ABSOLUTELY
SPEECHLESS THAT SOMEONE WOULD DO
THAT.
I THINK IT SPEAKS TO A NEED FOR
SENSITIVITY TRAINING AND PEOPLE
ARE STRETCHED AND STRESSED.
THEY NEED TO SEPARATE THEIR
PERSONAL OPINIONS FROM THE JOB
THEY'RE DOING AND DO A BETTER
JOB OF THAT AND POSSIBLY ALSO
HAVE THEIR COLLEAGUES SHOULD
ALSO HAVE AN EAR OUT PEOPLE TALK
AND PATIENTS TALK WITH EACH
OTHER AND WITH STAFF.
ING BA
>> THERE'S A WHOLE TEAM.
NOBODY FEELS UNDER THE PRESSURE
BECAUSE WE ALL WORK.
IT LOOKS LIKE THE TOPIC OF
IMPLEMENTATION IS SOMETHING THAT
IS IMPORTANT AND LOOKS LIKE IT
STRUCK ACCORD WITH OUR AUDIENCE.
I HAVE A SPECIFIC QUESTION FROM
ONE OF THE MEMBERS OF THE
AUDIENCE TO DR. DOORENBOOS, YOUR
WORK WITH PATIENTS AND
STAKEHOLDERS SEEMS TO BE
PROVIDING GREAT INPUT TO THE
SUCCESS OF THE GRACE STUDY.
WHAT CAN BE DONE TO EXTEND TO
BETTER ENGAGE STUDY PARTICIPANTS
FROM THE POPULATION TO RECRUIT
THEM INTO THE STUDIES?
AGAIN, JUST TO REFLECT BEFORE WE
STARTED WE EXCHANGED QUESTIONS
AMONG OURSELVES AND PARTICIPANTS
AND THIS SAY QUESTION THAT DAVID
WAS SUGGESTING TO US.
THE QUESTION IS BEING ASKED AND
WHEN I ANSWERED AND THERE WERE
OTHER MEMBERS CONTRIBUTING TO
THE ANSWER AS WELL.
GO AHEAD.
>> ACTUALLY I WOULD VERY MUCH
LIKE TO ANSWER ALONG WITH
MR. WHITE AND THE HOPE STUDY THE
DIALYSIS STUDY WAS IN THE AREA
OF RECRUITMENT WHERE OUR PATIENT
STAKEHOLDERS INCLUDING MR. WHITE
AND OTHERS SHARED IN THE
DIALYSIS UNIT FOR POTENTIAL
PARTICIPANTS.
MR. WHITE CAN TALK MORE ABOUT
THAT BECAUSE THAT WAS VERY
EFFECTIVE IN HELPING WITH
RECRUITMENT IN THE HOPE STUDY.
>> WE WERE GIVEN THE SUGGESTION
AND WE RAN WITH IT.
WE SORT OF BEGAN DISCUSSING THE
TOPIC AND FIGURING OUT HOW THE
VIDEO WOULD BE BEST DESIGNED AND
THROUGH OUR DISCUSSION WE
DECIDED ON QUESTIONS BACK ON OUR
OWN EXPERIENCES AND HAVING THE
INTERVIEWER ASK US THESE
QUESTIONS AND IT TURNED OUT SO
GENUINE AND SO PERSONALIZED I
THINK THERE WERE THREE OF US AND
OUT OF THE THREE WE GOT A LOT OF
DIVERSITY INTO THAT GROUP?
IT'S THE CHALLENGE IN GETTING
THE PAIN TREATED AND THE FRESH
AIR WE FELT BEING A PATIENT
ADVISORS FOR THE HOPE STUDY ALL
CAME THROUGH SO WELL.
IT WAS WIDELY APPLAUDED BOTH
WITHIN THE HOPE CONSORTIUM AND
WE ACTUALLY GET A LOT OF REQUEST
TO HAVE IT SHOWN ELSEWHERE.
NOT THAT WHOLE PUTTING A PLUG IN
FOR THAT BUT WE'RE PROUD OF OUR
WORK.
>> I DON'T KNOW IF WE CAN MAYBE
DROP A LINK TO THAT VIDEO IN THE
CHAT OR SHARE THAT WITH
PARTICIPANTS.
I WOULD AGREE WITH MR. WHITE.
IT WAS A WONDERFUL WAY THE
PATIENTS AS PART OF OUR TEAM ON
THE PROJECT DEVELOPED THIS
INCREDIBLE VIDEO THAT HELPS WITH
RECRUIT MANY FOR THE STUDY.
ONE EXCELLENT ILLUSTRATIVE
EXAMPLE.
>> I'LL PUT AN E-MAIL IN THE
CHAT IN CASE ANYONE WOULD LIKE
TO SEE THE VIDEO AND I CAN
FACILITATE THAT HAPPENING.
>> AS SOMEBODY WHO HAS BEEN
DEALING WITH CHALLENGES OVER THE
STUDIES AND DO YOU WANT TO
ADDRESS THAT ISSUE AND SHARE
WITH US WHAT YOU HAD IN MIND
SHARING YOUR CURRENT WORK.
>> WHOLE NOT SURE EXACTLY WHAT
YOU WOULD LIKE ME TO SHARE
REGARDING RECRUITMENT BUT
HONESTLY I FEEL LIKE IT WOULD BE
NICE TO RECOGNIZE THE SPEAKERS
THAT SPOKE TODAY AND SAY A
LITTLE BIT ABOUT THEY SPOKE ON
AND TRY TO TIE IT TOGETHER AND
THE ORDER OF THE PRESENTATIONS
WAS PERFECT.
I JUST DID WANT TO SAY A LITTLE
BIT I WANTED TO START WITH DAVID
WHITE AND WHEN YOU TALK ABOUT
RECRUITMENT, WE HAVE TO START
WITH THE PATIENT EXPERIENCE AND
I APPRECIATED HEARING HIS
EXPERIENCE.
I THINK HIS STUDY IS CALLED HOPE
WITH AN H AND IT'S A WONDERFUL
STUDY.
WHOLE AWARE OF THAT STUDY.
IT'S A POPULATION OF PATIENTS
YOU DON'T THINK OF HAVING
CHRONIC PAIN AND HEMODIALYSIS
PATIENTS SUFFER A LOT OF PAIN
AND PAIN INTERFERENCE WITH
FUNCTIONING AND QUALITY OF LIFE.
AND HIS EXPERIENCE AS A PATIENT
DEALING WITH CHRONIC PAIN AND
DEALING WITH PROVIDERS NOT
LISTENING TO HIM AND NOT
UNDERSTANDING HIS PAIN
POTENTIALLY ARGUING WITH HIM AND
SEEKING PAIN MEDICATION IS
IMPORTANT TO LISTEN TO.
THERE'S A HUGE PROBLEM THAT IT'S
BEEN IN THE LITERATURE THAT
BLACK AFRICAN AMERICANS HAVE
BEEN LEAST PRESCRIBED AND THIS
GETS TO THE STRUGGLE THAT WALLY
SMITH, DR. SMITH BROUGHT UP
ABOUT PROVIDERS NOT LISTENING TO
PATIEN
PATIENTS STRUGGLING WITH PAIN
AND THE CULTURE OF MISTRUST
WHICH IS UNFORTUNATE.
IT'S GREAT TO HEAR THE PATIENT
EXPERIENCE FIRST.
I APPRECIATED HEARING
DR. DOORENBOOS' EXPERIENCE OF
THE PRE-IMPLEMENTATION PHASE OF
HER TRIAL IN WHICH SHE REALLY
STARTED -- IT ALMOST SOUNDED TO
ME, YOU CAN COMMENT,
DR. DOORENBOOS, BUT YOU DIDN'T
SPECIFICALLY HAVE ANY
PRE-CONCEIVED INTERVENTIONS IN
MIND AND WENT TO PATIENTS AND
SAID, WHAT PAIN MANAGEMENT
APPROACHES MIGHT WORK BEST FOR
YOU IN MANAGING PAIN RELATED TO
SICKLE CELL DISEASE AND WENT
WITH THE INTERVENTIONS YOU HEARD
AND THE NIH HAS BEEN -- I HAVE
BEEN THE RECIPIENT OF A UH3
GRANT MECHANISM WHERE I THINK
RIGHT NOW WE WERE GIVEN TWO
YEARS FROM SOME RESEARCHERS HAVE
A PRE-IMPLEMENTATION PHASE TO
SURVEY PATIENTS SO YOU'RE ABLE
TO ACTUALLY DEVELOP AN
INTERVENTION THAT TAKES INTO
ACCOUNT WHAT PATIENTS WANT AND
NEED AND THEIR PREFERENCES.
I THOUGHT YOUR DESCRIPTION OF
THAT WAS LAUDABLE AND GREAT AND
THE ACTUAL DESIGN YOU SETTLED ON
THE SMART TRIAL DESIGN ALSO
ALLOWS FOR PATIENTS TO HAVE A
VOICE IN THE COURSE OF THE
INTERVENTION AND CONTEXT OF
RESEARCH WHERE THEY SAID THIS
ISN'T WORKING AND THEY'RE
RE-RANDOMIZED TO SOMETHING THAT
POTENTIALLY MIGHT WORK BETTER
FOR THEM SO I REALLY LIKED HOW
YOU BAKED IN PATIENT PREFERENCE
AND PATIENT EXPERIENCE INTO THE
DESIGN OF YOUR TRIAL.
I THOUGHT THAT WAS GREAT.
AND THEN DR. McKERNAN TALKED
ABOUT THE BIO PSYCHOSOCIAL MODEL
IN WORKING WITH PATIENTS WITH
CHRONIC PAIN.
I THINK THOSE OF US WHO HAVE
BEEN DOING THIS FOR MANY YEARS
UNDERSTAND THAT CYCLE OF CHRONIC
PAIN AND THE CHRONIC PAIN MAKES
THE MENTAL HEALTH PROBLEMS
WORSE.
IF WE DON'T MEET THOSE PATIENTS
WITH APPROPRIATE BIO
PSYCHOSOCIAL IN THE DISCIPLINARY
PAIN CARE MODELS, WE ARE REALLY
NOT GOING TO FUNDAMENTALLY BE
ABLE TO STOP OR BREAK OR STOP
THE CIRCLE OF PAIN.
IN THE V.A. WE HAVE ABOUT 2019
WE'VE HAD AN INTERDISCIPLINARY
BIO PSYCHOSOCIAL CLINICAL WITH A
PHARMACIST WHO SIT WITH A
PATIENT CHRONIC PAIN.
THAT MODEL HAS BEEN IN EFFECT
MANY YEARS AND HAS GOTTEN A
BOOST AND DR. SMITH BROUGHT IN A
LARGER SOCIO POLITICAL CONTEXT
FOR WHAT HAS HAPPENED IN THE
WORLD OF PAIN CARE AND
ADDICTION.
I THINK I WENT THROUGH MEDICAL
SCHOOL AT A TIME WHERE WE WERE
ACTUALLY ADMONISHED TO MAKE SURE
WE WERE NOT UNDER TREATING
PATIENT'S PAIN AND ENCOURAGED TO
PRESCRIBE OPIOIDS AND PROBABLY A
LOT OF THOSE TALKS WERE FUNDED
BY PHARMA -- BIG PHARMA AT THE
TIME AND THEN THE PENDULUM SWUNG
AND ALL OF A SUDDEN WE'RE TOLD,
NO, WE'RE OVER TREATING AND
CREATING ADDICTION.
A LOT OF US RUSHED TO RAPIDLY
TAPER OUR PATIENT'S OPIOIDS AND
WHO'S THE VICTIM IN THAT?
NOT US OR BIG PHARMA BUT THE
PATIENTS.
IF YOU'RE BLACK OR A PERSON OF
COLOR IT COULD HAVE HAPPENED
MORE ABRUPTLY FOR YOU THAN
OTHERS.
AND AROUND 20 AND WE'RE GOING TO
MODALITIES FOR PATIENTS WITH
CHRONIC PAIN AND THIS WAS AN
ATTEMPT TO TRY TO BRIDGE THE GAP
IN THE PENDULUM SWINGING TO TRY
AND OFFER NON-PHARMACOLOGIC
MODALITIES TO PATIENTS WHO WERE
ACTUALLY HAVING THEIR OPIOIDS
TAPERED AND THIS INCLUDED
MODALITIES LIKE YOGA AND TAI CHI
AND MINDFULNESS AND EXERCISE AND
SLEEP AND WHAT NOT.
THAT WAS VERY HELPFUL.
THE OTHER PIECE OF THE CARE
LEGISLATION WAS ACTUALLY REALLY
THE ENCOURAGEMENT OF THE USE
CALLED BUPRENORPHINE IN PATIENTS
WITH QUOTE, ADDICTION AND WE
WERE PRESCRIBING SUBOXUM AND WE
FIND A LOT OF THE PATIENTS DON'T
HAVE ADDICTION, PSYCHOLOGICAL
ADDICTION PER SE, THEY HAVE A
PHYSICAL DEPENDENCE THAT STILL
REQUIRES A TYPE OF OPIOID
SUBSTITUTION TO FUNCTION IN
THEIR LIVES.
CARE ACT LEGISLATION WAS A HUGE
BOON FOR FEDERAL SYSTEMS LIKE
THE V.A. IN WHICH I WORK A
SINGLE-PAIR SYSTEM MANDATED TO
ENROLL ALL VETERANS ENROLLED IN
CARE WITH A COMPLIMENTARY
INTEGRATIVE HEALTH MODALITIES.
WHAT WHOLE HEARING FROM
DR. SMITH AND OTHERS IN THIS
SESSION IS THAT SADLY IN THE
PRIVATE SECTOR WHERE PATIENTS
ARE DEPENDENT ON INSURANCE
COMPANIES TO PAY FOR
COMPLIMENTARY INTEGRATIVE HEALTH
MODALITIES, PATIENCE ARE NOT
ABLE TO ACCESS THOSE MODALITIES
AND SO THERE'S AN ACCESS
PROBLEM.
ON ONE HAND WE'RE BEING
ENCOURAGED TO DO THIS OUTSIDE OF
THE FEDERAL SYSTEMS LIKE V.A.
AND DOD BUT THERE'S STILL NO
INCENTIVE TO PAY FOR BIO
PSYCHOSOCIAL INTERDISCIPLINARY
CARE LIKE YOU CAN IN
SINGLE-PAYER SYSTEM.
I WANTED TO HONOR THESE
DIFFERENT PERSPECTIVES AND
WELCOME ANY FURTHER QUESTIONS OR
DISCUSSIONS EITHER FROM THEM OR
FROM THE AUDIENCE.
>> THANK YOU.
GOING BACK TO THE TOPIC OF THE
SESSION WHICH IS IMPLEMENTATION
OF WHOLE PERSON CARE.
YOU AND YOUR TEAM HAVE DONE SOME
OF THE WORK.
SO
>> WHOLE LOOKING AT THE TIME AND
WONDERING IF ANYONE FROM THE
AUDIENCE HAS ANY QUESTIONS FROM
THE SPEAKERS HERE TODAY.
IT'S A BROAD AND IMPORTANT TOPIC
ON SO MANY DIFFERENT LEVELS.
>> WOULD YOU PLACE THE CARE ACT
LEGISLATION LINK IN THE CHAT.
>> I'LL GOOGLE THAT AND DROP IT
IN THE CHAT.
ANYONE CAN GOOGLE IT.
KARA LEGISLATION OF 2016.
WHOLE HAPPY TO SEARCH THAT AND
DROP IT THAT IN THE CHAT.
>> THERE'S AN INTERESTING
QUESTION AND IT'S WORTH READING
OUT LOUD.
AND MY ANSWER TO WHAT I KNOW AND
THIS IS NOT THE PURVIEW OF NIH
BUT OF THE PUBLIC REQUESTING A
TYPE OF CARE.
WHAT NIH CAN DO IS FUND THE
RESEARCH TO PROVIDER EVIDENCE
FOR THIS TYPE OF CARE BUT AGAIN
IT'S THE AUDIENCE LIKE THIS THAT
CAN GO AND ADVOCATE AND DEMAND
AND ACTUALLY THERE'S A COMMENT
BY KONNIE SNYDER.
I DON'T KNOW IF YOU WANT TO SAY
IT OR WANT ME TO READ IT BUT
IT'S INTERESTING ALSO THE
COMMENT IS NOT MANY MEDICAL
FACILITIES HAVE EXPERIENCED DOD
AND CIVILIAN OFFE ENTITY WHO
CAN PIECE TOGETHER THE ASPECTS
OF THE PATIENT'S MULTI-SYSTEM
PUZZLE.
CASE MANAGERS AND PATIENT
ADVOCATED AREN'T EQUIPPED AND
UNDERSTANDING WIDESPREAD
IMPLEMENTATION OF HEALTH AND
CLINICS WILL TAKE YEARS AND AN
INTERMEDIARY STEP CAN BE TO HAVE
MD TO I.D. COMPLEX SITUATIONS
SUCH AS A PATIENT'S CHRONIC PAIN
AND BE INTEGRATED INTO WHOLE
HEALTH CLINICS THAT DO EXIST.
SO QUESTION IS IS THERE A
DISCUSSION TO IMPLEMENT A
POSITION OF THIS SORT?
WHAT ARE THE SOLUTIONS?
HOW DO WE MOVE FORWARD?
>> DID YOU SAY IS THERE A
MOVEMENT TO IMPLEMENT WHOLE
HEALTH CLINICS FOR CHRONIC PAIN
OR PHYSICIANS?
>> ACTUALLY THE SUGGESTION WAS
MAYBE ONE SOLUTION IS A
SPECIALIST WHOLE PERSON HEALTH
SPECIALIST IN PLACE OF A
STEPPING STONE IN BUILDING THE
WHOLE PERSON CLINIC.
>> THAT'S CORRECT.
>> SOMEONE WHO CAN INTEGRATE THE
WHOLE PERSON HEALTH AND IS THERE
A HOSPITALIST, IF YOU WILL, AT
LEAST A MAJOR FACILITIES A
MEDICAL EXPERT TO HELP THE
COMPLEX PATIENTS REFERRED TO
THEM SO THEY CAN THEN FACILITATE
THE WHOLE PERSON CONCEPT.
>> THAT'S THE MODEL AT
VANDERBILT.
THERE'S A MEDICAL TEAM PROVIDER
[NO AUDIO]
-- WE HAVE EVERYBODY UNDER ONE
ROOF IT MAKE THAT HAPPEN.
>> LIKE A QUARTERBACK AND HOW
THERE'LL BE QUARTERBACKS PLACED,
AT LEAST AT MAJOR MEDICAL
FACILITIES BEFORE THE COST IS
SUBSTANTIATED IN ORDER TO
IMPLEMENT THE PHENOMENAL
APPROACH DISCUSSED HERE THE LAST
COUPLE DAYS.
>> WHAT CAN BE DONE TO GET THIS
IN THE PRIVATE SECTOR?
THIS WAS A QUESTION OPPOSED IN
2011 AND IT'S AN IMPORTANT
QUESTION AND SOMETHING THAT
KEEPS RESONATING THROUGH HIRE.
-- HERE.
ALSO A SPECIALTY RECRUITMENT
PROVIDER AND FUNCTIONAL
MEDICINE.
I DON'T KNOW HOW MANY PEOPLE ARE
FAMILIAR WITH THIS TYPE OF
PRACTICE.
>> LIKE TO JOIN IN IN THE
CONVERSATION AND GIVE AN EXAMPLE
FROM THE MILITARY.
WHOLE BLESSED TO ACTUALLY WORK
WITH AN ARMY MEDICAL CENTER AND
IN ARMY AND ACTIVE DUTY THERE'S
THE INTERPROFESSIONAL TEAM
MANAGEMENT CLINICS AND WHAT THEY
HAVE DONE IS THERE YOU DO GET
THAT INTERDISCIPLINARY TEAM
APPROACH BUT THEN WHAT IS
GERMANE TO THIS CONVERSATION IS
THAT WHAT THEY HAVE DONE IN
COMMUNITY CLINICS IS PAIN
CHAMPIONS.
THESE PAIN CHAMPIONS ARE PRIMARY
CARE PROVIDERS THAT HAVE
SPECIALIZED TRAINING IN PAIN
MANAGEMENT.
I THINK THAT RESONATES WITH ME
WITH WHAT WE'RE TALKING ABOUT
HERE AND WE'VE DONE THAT A
LITTLE BIT MORE IN RURAL HEALTH
CLINICS SO IF YOU HAVE THAT
CHRONIC PAIN PATIENT COMING
THERE'S THAT EXPERIENCE BUT WITH
BACK UP THEY CAN CALL SOME OF
THESE INTERPROFESSIONAL
PROVIDERS TO JOIN VIA TELEHEALTH
TO PROVIDE THAT EXTRA LAYER AND
THAT MIGHT BE SO THERE IS A
NUMBER OF INTERPROFESSIONAL
CLINICS OUT THERE BUT THERE'S
ALSO IN AREAS WHERE PERHAPS YOU
CAN'T GET THAT GROUP TOGETHER,
THE PAIN SPECIALIST TRAINED
PROVIDER THAT CAN START AND HAVE
THAT BACKGROUND OR EXTRA LAYER
OF SUPPORT TO CALL ON VIA
TELEHEALTH THAT WILL HELP WITH
SOME OF THE COMPLEX PATIENTS.
JUST SOME IDEAS OF MODELS IN
OPERATION AS IT WERE FOR CHRONIC
PAIN MANAGEMENT.
>> THIS IS WALLY.
I WANT TO AGREE WITH THAT AND
THE PROBLEM WE HAVE IS THAT OF
NOMENCLATURE.
ANESTHESIOLOGISTS LISTENING IN
WILL KNOW THAT THEY ARE OFTEN
REFERRED TO AS PAIN MANAGEMENT
SPECIALISTS.
AND PATIENTS ARE OFTEN REFERRED
TO THEM EXPECTING WHAT THIS
SPECIALTY TRAINED PHYSICIAN CAN
OFFER.
IN FACT, WHAT THEY DO OFFER AS
AN ANESTHESIOLOGIST IS
INJECTIONS OR SOME NARROW RANGE
OF SERVICES THAT IS NOT
BEHAVIORAL AND THE PATIENT AND
THE PAIN MANAGEMENT SPECIALISTS
HAVE ONE OR TWO IN COMMON.
>> THAT'S A STANDARD.
>> I FEEL BETTER HEARING THE
PAIN IS BEING DISCUSSED BY CARE
PEOPLE AND SHARE THIS WITH MY
COMMUNITY WHERE PAIN IS
PREVALENT AND OFTEN POORLY
MANAGED.
SO DOUBLY GRATEFUL FOR THE
OPPORTUNITY TO PRESENT AND
RECEIVE USEFUL INFORMATION I CAN
SHARE WITH MY FRIENDS.