Advancing the Science of Community-Engaged Health Disparities Research

The National Institutes of Health’s (NIH) National Heart, Lung, and Blood Institute (NHLBI) convened a virtual two-day workshop on “Advancing the Science of Community-Engaged Health Disparities Research” on November 14th and 15th, 2022. The objective of the workshop was to identify gaps and opportunities within community-engaged health disparities research field, more specifically, discuss the state of the science, as well as recognize novel methodologies and advancements that are shaping the future of community-engaged heath disparities research. The workshop brought together a series stakeholders of the field, including researchers, healthcare providers, community partners, and federal, state and local government officials, who discussed the present and future of community-engaged health disparities research field, especially in light of the experiences and lessons learned from many NIH-funded community-engaged research efforts such as the Community Engagement Alliance (CEAL) Against COVID-19 Disparities.

Over the two-day workshop, thirty-two scientists and community representatives participated in moderated panels to discuss best practices, lessons learned, and research gaps and opportunities. Both days of the workshop garnered several hundred attendees while several hundreds more continue to watch the publicly available videocast of the event.

The COVID-19 pandemic demonstrated the importance of working with community leaders, community-based organizations, and other relevant stakeholders to support in-depth examination of social, ethical, behavioral, structural, environmental, historical, and policy factors related to health inequities. Additionally, it has demonstrated the value of building and nurturing long-lasting trusting relationships to sustain active community engagement.

With the advancement of the science of health disparities research, it is beneficial to revisit the principles, methodologies, and new developments in community-engaged research and its application in reducing health disparities and promoting health equities.

State the problem being addressed and its importance

The COVID-19 pandemic demonstrated the importance of working with community leaders, community-based organizations, and other relevant stakeholders to support in-depth examination of social, ethical, behavioral, structural, environmental, historical, and policy factors related to health inequities. Additionally, it has demonstrated the value of building and nurturing long-lasting trusting relationships to sustain active community engagement.

With the advancement of the science of health disparities research, it is beneficial to revisit the principles, methodologies, and new developments in community-engaged research and its application in reducing health disparities and promoting health equities.

Background

Cultivating community engagements and building trust for sustainable relationships is a research platform that is just as important as other NIH-funded investigations. The NIH considers that race and ethnicity (as a self-identified social construct) and socioeconomic status are fundamental in determining health.

NIH has vetted social determinants of health measures and encourages scientists who apply for NIH funding to refer to the PhenX Toolkit on Social Determinants of Health (SDoH) measures. The National Institute of Minority Health and Health Disparities (NIMHD) has also created a Minority Health and Health Disparities Research Framework to serve as a reference for investigators. Grants at the NIH need to move further to the right on this framework towards funding more community and societal projects.

NIH is also looking to expand its Community Engagement Alliance (CEAL) infrastructure for conducting community-engaged research while always moving at the speed of trust. Grants from the Community Partnerships to Advance Science for Society (ComPASS) will go to community organizations to fund community-led health interventions.

Keynote address by Dr. Sylvia Trent Adams (President of the University of North Texas Health Science Center at Fort Worth)

Dr. Trent noted that the most important dimensions of healthcare disparities that researchers and scientists need to consider is access to care. Therefore, researchers should assess the quality of our healthcare delivery system and consider all the social determinants of providing care that meets everyone’s needs at all levels.

Dr. Trent encouraged researchers to:

1. Be informed - build a relationship before asking for participants, understand what the community needs and what they expect from the research as a partner;
2. Be genuine – not just for the sake of research but to build relationships;
3. Advocate for the community — broker opportunities for them in education, transportation, etc.; and
4. Recognize opportunities to address structural disparities and inequities — by developing a research program that strives for and is committed to building and sustaining long-term partnerships, sharing information and maintaining open communication about the research and its impact and letting communities have a say in research objectives will go a long way in building trust between researchers and communities. Implicit bias must be addressed from a systems level.

Keynote address by Dr. Lisa Cooper (Bloomberg Distinguished Professor at Johns Hopkins University)

Dr. Cooper proposed five steps for the future direction of community-engaged health disparities research:

1. Operationalizing Community Engagement – e.g., by utilizing the Assessing Community Engagement (ACE) conception model and the Community Engagement Best Practice Guide developed at Johns Hopkins.
2. Moving Partnerships Toward True Collaboration and Shared Leadership – e.g., through the Continuum of Community-Engaged Research: A Roadmap for Understanding and Assessing Progress approach to increase community involvement, impact, trust, and communication flow.
3. Building Capacity for Community-Engaged Research – which requires awareness of the beliefs, preferences, values, and expectations below the surface of the community.
4. Fostering Local/Global Learning – through community-based research projects that Johns Hopkins carries out in Baltimore.
5. Moving from Engagement to Empowerment and Equity – e.g., as showcased through the Johns Hopkins seminar series titled ‘Health Equity Chance’.

Workshop sessions

The workshop was grounded in six sessions (three sessions per day) which elicited a discussion on specific questions with a distinguished panel of experts. The panelists responses and discussion during each session are summarized below.

Session 1: Community Engagement to Reduce Health Disparities – Lessons from a Pandemic

This session sought to explore the lessons learned in community-engaged health disparities research during the pandemic, with a focused discussion on what can be done to increase the sustainability of community-based organizations (CBOs) and community partners, and offer them an equitable and inclusive sustained platform.

The panel emphasized  building, sustaining and cultivating trust; developing and strengthening academic and community partnerships; prioritizing the needs of the community over focusing on the funded research; greater investments in community research capacity building; and getting the story out by connecting those good at evaluation measures and storytelling with community coalitions and groups at local health department levels who are the boots on the ground.

Session 2: Planning for and Measuring Bi‐directional Community Engagement

This session focused on measuring community engagement, such as discussing how researchers should demonstrate that they understand the community’s expectations and challenges to participate in research; how they capture a community’s strengths, assets, and resilience; how they plan for and measure a team’s preparedness to conduct community-aligned research on equal footing with the community; and what measures and indicators can be used to demonstrate successful and meaningful engagement especially in bi-directional and multi-directional communications.

The panel discussion stressed that time is needed to build relationships and bi-directional learning while moving at the speed of trust. Language and cultural appropriateness are important elements when bridging relationships in research, and researchers should be encouraged to communicate in a way that ensures everyone in the community can participate. In addition, researchers need to learn about the unique culture of the community and move forward with the research objective in a respectful way that honors their culture and tradition.

Session 3: Addressing Health Inequities Through Community Engagement

Session 3 focused on which methods can be employed to improve inclusive participation in interventions by identifying three key points:

1. Ensuring genuine community participation by involving the community at every stage of the research, from developing protocols and the research questions, data collection, and evaluation, to disseminating the results.
2. Use the language(s) of the community in a voice they can understand at every point of communication.
3. Acknowledging the mistrust and historical trauma associated with health research.

The panel concluded that research should be action-oriented so projects can end up with results that can inform the community, inform policy, and help move everyone forward to solutions. “Slow down to make progress.”

Session 4: Importance of Community‐Engaged Research in Combatting Global Health Disparities

The panel discussed the successful strategies and barriers to community-engaged research in global settings, especially in the context of the recent pandemic. Several common themes emerged, identifying a few keyways to successfully implement community engaged research in global settings, including:

• The need for deliberate engagement, which requires being fully present with a genuine intention to serve the community and address their needs.
• There is a potential priority gap when funders and government officials have different priorities than the community.
• The views, perspectives, and languages of the community and stakeholders often widely differ from the researchers due to extreme educational and economic gaps.
• Form a formal or informal community advisory board and begin communication early and often.
• Partner with community-based and non-government organizations already linked to a community doing social or agricultural work or other development programs.
• Say yes to partnerships with the government, non-profits, philanthropy, and even the private sector to address health disparities.

Session 5: Data Science and Community Engagement Efforts – Past, Present, and Future

This session focused on data science challenges in community-engaged health disparities research as well as how to align these challenges with opportunities for data science in empowering communities.

The panelists stressed the importance of collecting the right data as the community experience is not captured in current data science efforts. The community cannot only help determine the right data to collect but can also help analyze that data on a routine basis and provide feedback to the community for action. Currently, data science evidence is sub-optimally used and there is an urgent need to build the right data architecture working with communities and community-based researchers. The need to develop and implement appropriate policies and standards that govern data collection management was also brought up. The panelists agreed that ethical standards need to be established to govern data sharing and data-driven technologies (including artificial intelligence) to improve health outcomes for everyone.

Session 6: Advancing Inclusive Excellence in Community‐Engaged Research

The final session delved into a discussion on building a more diverse scientific research workforce in community-engaged health disparities research by enabling early career scientists to move into community-engaged research responsibly and by encouraging established or mid-career investigators to apply community-engaged research methods in their work regardless of their field of study. In addition, the panelists were asked to provide their thoughts on how to sustain academic and community partnerships when scientists with established relationships with a community move to a different institution or field of study.

The panel stressed the importance of mentoring for young scholars and early career scientists of color so they receive mentoring by scientists that they identify with or by community leaders who offer tremendous expertise; the need for researchers to check their biases, especially those who mentor or support early career scientists; the Importance of creating sustainable equal partnerships in the city where the university is located where local community health improvement coalitions offer a good learning space for mid and later-career researchers; and the value of find the talent already in the community who can be trained to take part in the research design.

“The findings, knowledge gaps, and opportunities described here represent a summary of individual opinions and ideas expressed during the workshop. The summary does not represent a consensus opinion or directive made to or by NHLBI or NIH.”

Program Booklet

See the meeting program booklet with bio-sketches of all speakers, moderators and planners of the workshop, plus agenda.

Videocast

November 14: https://videocast.nih.gov/watch=46507 
November 15: https://videocast.nih.gov/watch=46509