>> Tiffany Powell Wiley: Hello, my name is Dr. Tiffany
Powell-Wiley, and I'm Chief of the Social
Determinants of Obesity and Cardiovascular Risk
Laboratory at the National Heart, Lung,
and Blood Institute.
Today I'll be talking about community engagement,
and community based participatory research.
And this is part one of a three-part series.
As far as an outline for today,
the first I'll discuss the role of community engagement
to address conditions
impacted by social determinants of health.
I'll then go into the continuum of community engagement
and the differences between community engagement
and patient engagement.
I'll then talk about the role of community engagement
for improving the diversity of clinical trials.
And finally, I'll talk about the types of interventions
that can happen at multiple levels
and that can incorporate community engagement
to promote health equity.
Community engagement is critical
in addressing complex chronic diseases,
particularly those that are intersectional
and act synergistically. And we can consider obesity,
diabetes, and cardiovascular disease
to be these types of diseases.
All of these diseases work together
and are impacted by social determinants of health,
like economic disadvantage, environmental factors,
and psychosocial stressors. And community engagement
can help to understand biological pathways
that connect social factors to chronic diseases.
For instance, community engagement
provides an opportunity to understand stressors
that have the most impact in the daily
lives of community members.
And the trust built through community engagement
allows for detailed examination of health factors
that are influenced by these stressors.
Ultimately, the goal is to build solutions
that are not only to understand
what is happening in the communities
but also to address the health needs within communities.
We can define a community based on geography,
race/ethnicity, gender, sexual orientation,
disability, health condition,
or a combination of any of these factors.
And communities are typically groups
with a common cause or interest and can be connected by the fact
that they obtain care in the same place
or are provided health care through similar agencies,
or that they have a common public health cause,
and work together towards addressing solutions
for that public health concern.
And communities can be also brought together by state,
local or tribal leaders, as well as policymakers
to address a public health concern.
Community engagement works along the continuum
with the least amount of community engagement,
researchers design, and all aspects of the study,
and the community really works
only in answering the research questions.
At the other end with complete community engagement,
the community drives the research
and defines the issue and the question.
As a part of the research,
the community creates the data collection tools
and leads in the implementation of the study.
The community also leads and runs data analysis
and dissemination of the study findings.
And with complete community engagement,
researchers collaborate to help facilitate the process.
And between the two ends of the spectrum,
community members and researchers work collaboratively
in the design, implementation,
and dissemination of study findings.
There are important differences
between community engagement and patient engagement.
For instance, in building trust with stakeholders,
community engagement typically built on relationships
between academic partners
and community members or organizations,
while patient engagement is typically built on relationships
that are established in the healthcare setting.
Community engagement is also typically built
on a common interest around a public health issue
that affects an entire community.
While the source of common interest and patient engagement
is typically a family or personal health issue,
or an experience related to medical care.
Community engagement typically involves a diverse
set of stakeholders from local government,
schools, or faith-based organizations,
for instance, but patient engagement
typically includes patients and clinicians.
We can think of several types of patients
and community engagement, practice-based research networks
are a type of patient engagement
where clinicians and patients are involved
in deciding what to study, how to study it,
and how to evaluate and present the results.
For instance, this type of work can help in quality improvement
in health care settings.
Community oriented primary care
brings elements of community engagement into primary care.
And the main features of community oriented primary care
are providing clinical care for individuals
and families in the community with special attention
and focus on the community as a whole,
and the different parts of the community
when thinking about the needs for care,
planning and providing services,
and evaluating the effects of care.
And then finally, community based participatory research
is clinical research that really maximizes community engagement,
and where the research is designed
and driven by community members.
Community engagement is an excellent way
to overcome mistrust of the healthcare system
and mistrust of clinical research,
particularly for populations underrepresented
in biomedical research.
We know that historical events many decades ago,
but also more recently, contribute to this mistrust
that communities feel and bias and mistreatment
that exists and occur in the healthcare system
also contribute to this mistrust.
This mistrust can really occur at multiple levels,
and it can influence the patient as well.
Community engagement can work at each of these levels
by gaining input from caregivers as well as family members,
as well as community members outside of the family unit
to help in providing
input on the design of clinical research studies,
particularly research studies that can affect the health
of those most impacted by health disparities.
Studies have examined how community engagement
can influence representation of populations who are
traditionally underrepresented in biomedical research.
For instance, research done at Beth Israel Deaconess Hospital
in Boston
examined cardiovascular disease intervention trials
that were done between 2000 and 2019
to examine the recruitment of black adults into these studies.
This work showed that only 21 percent of studies
that were done during that time period, specified recruitment
strategies for reaching underrepresented populations.
Only 13 percent of studies
use community-based recruitment techniques.
And only 5 percent of the studies
described engaging community members in study design efforts.
And really these findings highlighted
that those who were defined --
and those studies that defined recruitment targets
for underrepresented populations actually had higher recruitment
of black participate -- participants.
And it also highlighted that there's room for improving
recruitment and using community engaged strategies
in the recruitment of underrepresented populations,
particularly for cardiovascular disease studies.
Community engagement can also be the basis
for developing interventions
not only at the individual level,
but also at the community and policy level
to improve the treatment of obesity,
diabetes, and cardiovascular disease.
And this just highlights some of the potential interventions
that can happen at different levels.
It's also important to consider how to tailor strategies
for building sustainable community partnerships.
And these sustainable partnerships
can come from recognizing resilience factors and assets
with that exists within all communities,
looking to communities for cultural interpretation
of study findings,
fostering upward mobility within a partnership of community
members and community leaders,
remembering that community health is holistic
and there are minty -- many interconnected approaches
that can work in improving community health.
Additionally, research approaches
can work at multiple levels to address community needs.
It's also important to rely on successful models
by identifying community champions
as strategic partners for advancing and adopting
interventions and developing sustainable interventions.
So, in summary, community engagement
can aid in building trust for sustainable interventions,
particularly when they account for social determinants
of health, that promote chronic diseases
like cardiovascular disease, obesity, and diabetes.
And these interventions can begin to uncouple
these chronic diseases and reduce prevalence.
Community engagement can work at both --
within the clinical research realm
but also within the healthcare system
to reduce health disparities and promote health equity.
Our first question is which of the following
can define a specific community?
A) Geography? B) Health condition? C)
Local groups with common public health concerns?
Or D) All of the above?
And the answer is D) All of the above.
The second question is which of the following
are examples of engagement approaches to conduct
clinical research studies in community settings?
A) Practice based research networks? B)
Community based participatory research, C)
Community oriented primary care, or D)
All of the above? And the answer is D)
All of the above.
Thank you.