U.S. Department of Health & Human Services
Understanding Patient and Community Engagement
HEAL Values the Voices of Lived Experience
To realize the NIH HEAL Initiative® mission, the voices of people with lived experience are vital. A core HEAL principle is that research must be relevant to the individuals, families, communities, and populations it is designed to help. The HEAL Community Partner Committee, first convened in 2021, aims to help HEAL identify, refine, and prioritize patient and community engagement activities.
HEAL’s whole-person research approach recognizes that individuals are unique—with a range of conditions and experiences that affect resilience and risk. Communities across the country are highly diverse, requiring culturally relevant approaches that resonate with them.
Infusing Patient and Community Engagement in HEAL-Funded Research
HEAL investigators are taking a variety of unique approaches to incorporate guidance and perspectives of community members into their research projects. In 2022, researchers from 147 HEAL-funded projects shared information about their patient and community engagement efforts. They develop these approaches in the context of individual studies, settings, and patient populations to better engage patients, communities, and other stakeholders; and to improve recruitment, retention, and inclusion of participants from populations that experience health inequities.
What Does HEAL Mean by Patient and Community Engagement?
HEAL-funded research involves people with lived experience throughout the research process: planning a study, implementing it, and sharing the results so they can be useful for real people in real communities. People with lived experience can make important contributions to all types of research, from basic science and discovery to clinical trials and implementation science.
Who to Engage
People with lived experience with pain and/or substance use disorders, their caregivers, health care providers, and community groups who provide support all have valuable insights. People with lived experience from groups that have been underrepresented in research projects—due to racism, sexism, gender discrimination, classism, ableism, and their intersections, for example—bring additional, critical perspectives that can advance health equity.
When Can Researchers Engage People?
Decisions occur throughout the lifecycle of a research project. They include the choice of research question, which populations to study, eligibility criteria, recruitment and activities to retain participants during the study, development of study materials such as informed consent forms and instructional materials, and perspectives on data analysis and interpretation of findings. People with lived experience of pain and/or a substance use disorder and other relevant collaborators can be engaged at any of these decision points.
What Does Effective Engagement Look Like?
Effective engagement:
- Requires open dialogue.
- Is collaborative and mutually beneficial.
- Shares power.
- Means communities feel that their input is valued and acted on.
- Aligns with individual and community needs, cultural values, and preferences for how they offer feedback.
- Can be measured.
Consider these examples of common scenarios experienced by people with lived experience who advise on studies and opportunities to ensure effective engagement, rather than tokenism.
A circular flowchart labeled “People With Lived Experience as Partners in Research” depicts six steps in shades of purple, pink, and red.
The first section is titled, “Develop the research concept” and includes the explanation, “Partner with people with lived experience and related communities to develop and hone the most pressing questions” as context.
The second section is titled, “Design the research plan” and includes the explanation, “Incorporate the needs of people with lived experience and related communities. Explore barriers to participation” as context.
The third section is titled, “Recruit and engage participants and communities” and includes the explanation, “Communicate why the research is needed and the benefits and risks of participating” as context.
The fourth section is titled, “Monitor the research” and includes the explanation, “People with lived experience offer recommendations for revising approaches if needed” as context.
The fifth section is titled, “Analyze data and interpret results” and includes the explanation, “Analyze results alongside people with lived experience and communities to garner feedback on how communities will view results” as context.
The sixth section is titled, “Disseminate study information” and includes two paragraphs as context. The first paragraph reads: “Involve people with lived experience and communities in ‘translating’ the findings for populations that need the information most. Share findings with study participants.” The second paragraph reads, “Results and data are readily available and accessible so communities can help implement findings and formulate new questions.”
Engagement Throughout the Research Lifecycle
Planning for Patient and Community Engagement
Involving people with lived experience and other relevant collaborators beginning in the early planning stages of a study can help with selecting a research topic, addressing evidence gaps, and identifying patient-centered outcomes, among other benefits. In addition, early engagement can reveal how people with lived experience and their communities could help in other stages of the research; it also can ensure that sufficient mechanisms and budgets are in place for their feedback.
Patient Engagement in Conducting a Study
Engaging patients throughout a study can help with designing a research protocol, recruiting participants, collecting data, or other steps.
Patient and Community Engagement in Sharing Findings
By sharing findings with the communities and organizations you have engaged in your research, you can directly inform changes that can improve public health.
Examples of Engagement Throughout the Research Lifecycle
Engaging in Design of Research
HEAL researchers are partnering with tribal community members to integrate Native cultural strengths and healing traditions into the successful treatment for opioid use disorder in primary care and addiction treatment clinics serving American Indian and Alaska Native people.
In the HEAL-funded Hemodialysis Opioid Prescription Effort (HOPE) study, patients like Dawn Edwards have designed materials for recruitment, participated in the writing of informed consent documents, and designed and participated in introductory videos that can be used to present the study to potential participants.
Engaging in Awareness and Recruitment
Afton Hassett, Psy.D., of the HEAL-funded Back Pain Consortium (BACPAC) research team, talks about effective patient and community engagement. Community members in Ann Arbor, Michigan, are working with HEAL scientists to improve research recruitment and engagement through tailored strategies.
Opioid-Overdose Reduction Continuum of Care Approach
This resource from HEAL Connections translates the science and evidence from the HEALing Communities Study Opioid-Overdose Reduction Continuum of Care Approach into a practice guide for individuals working to address the opioid and overdose crisis. This guide includes a menu of evidence-based practices for reducing overdose deaths and real-world tips for implementing the evidence-based practices.
Engaging in Dissemination
The HEALing Communities Study is working with communities to disseminate and implement evidence-based practices to help decrease overdose deaths in states hardest hit by the opioid epidemic.
Research results need to benefit people living with pain, addiction, and other co-occurring conditions but too often get stuck in journal articles and conference presentations.
Patient Engagement Resources for All Stages of Research
No matter where you are in your research process, there are resources available to assist you at every stage of your study lifecycle.
- All of Us “Core Values” – National Institutes of Health (NIH)
- Assessing Meaningful Community Engagement: A Conceptual Model to Advance Health Equity through Transformed Systems for Health – National Academy of Medicine
- Community Engagement Definition – NIH
- Engagement in Health Research Literature Explorer – Patient-Centered Outcomes Research Institute
- FDA Patient Engagement Overview – U.S. Food and Drug Administration
- Integrating Participatory Approaches Into OPRE-Funded Evidence Generation to Support the Lives of Children and Families pdf 1.93 MB (Presentation, 2021 OPRE Community Engagement Meeting Materials, Pediatric/Youth) – U.S. Department of Health and Human Services, Administration for Children and Families
- Meaningful Community Engagement for Health and Equity pdf 26.54 KB – Centers for Disease Control and Prevention (CDC)
- Principles of Community Engagement pdf 32.74 KB – CDC
- Reimagining Our Approach to Research to Advance Racial Equity pdf 3.19 MB (Presentation, 2021 OPRE Community Engagement Meeting Materials, Pediatric/Youth) – Administration for Children and Families
- Supporting Community Outreach and Engagement Activities Webinars, Case Studies, and Implementation Plans – National Cancer Institute
- The Future of Precision Health: Engaging Underrepresented Research Participant Communities and Achieving Responsible Return and Use of Genomic Results (Recording of virtual event, American Society of Human Genetics (ASHG) Annual Conference October 2020) – All of Us
Find more on our Patient and Community Engagement Resources page
Engaging Patients and Communities in HEAL Research
This recorded webinar explores how HEAL researchers are engaging patients and communities, to ensure treatment approaches meet the needs of patients in real-world settings.
HEAL Updates in Your Inbox
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Lessons From the Field: Patient and Community Engagement
HEAL prioritizes the perspectives of patients and communities in research. Scientific solutions for complex conditions like opioid use disorder and pain cannot be effective without knowing if, how, and how well they will work in real people with these conditions.
References
Braun K, Nguyen T, Tanjasiri SP, et al (July 2010). Operationalization of Community-Based Participatory Research Principles: Assessment of the National Cancer Institute’s Community Network Programs. American Journal of Public Health 100(7). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292685/.
CDC Prevention Research Centers (n.d.). Partnership Trust Tool—User’s Manual. Retrieved from https://orphroadmap.org/docs/modernization/Partnership_Trust_Tool.pdf pdf 395.88 KB.
Cramer ME, Atwood JR, Stoner JA. (Feb. 6, 2006). Measuring Community Coalition Effectiveness Using the ICE© Instrument. Public Health Nursing (23). Retrieved from https://doi.org/10.1111/j.0737-1209.2006.230111.x.
Goodman MS, Ackermann N, et al (Sept. 20, 2021). Development and Validation of a Brief Version of the Research Engagement Survey Tool. International Journal of Environmental Research and Public Health (18)19. Retrieved from https://doi.org/10.3390/ijerph181910020.
Heaton K, Smith GR, King K, et al (Fall 2014). Community Grand Rounds: Re-Engineering Community and Academic Partnerships in Health Education—A Partnership and Programmatic Evaluation. Progress in Community Health Partnerships: Research, Education, and Action (8)3. Retrieved from https://muse.jhu.edu/article/562276.
Khodyakov D, Stockdale S, Lizaola E, et al (October 4, 2012). On Measuring Community Participation in Research. Health Education & Behavior 40(3). Retrieved from https://journals.sagepub.com/doi/10.1177/1090198112459050.
Kothari A, MacLean L, Edward N, et al (2011). Indicators at the Interface: Managing Policymaker-Researcher Collaboration. Knowledge Management Research & Practice (9). Retrieved from https://www.ktpathways.ca/system/files/resources/2019-06/Kothari2011_Article_IndicatorsAtTheInterface.pdf pdf 147.09 KB.
National Academy of Medicine (2022). Assessment Instruments for Measuring Community Engagement. Retrieved from https://nam.edu/programs/value-science-driven-health-care/assessing-meaningful-community-engagement/introduction-to-assessment-instrument-summaries.
National Academy of Medicine (2022). Assessing Meaningful Community Engagement: A Conceptual Model to Advance Health Equity through Transformed Systems for Health. Retrieved from https://nam.edu/assessing-meaningful-community-engagement-a-conceptual-model-to-advance-health-equity-through-transformed-systems-for-health/.
PCORI (2016). Ways of Engaging—Engagement Activity Tool (WE-ENACT). Retrieved from https://ceppp.ca/en/evaluation-toolkit/pcori-engagement-activity-inventory-net-enact-and-we-enact.
Staniszewska S, Brett J, Mockford C, et al (October 27, 2011). The GRIPP checklist: Strengthening the Quality of Patient and Public Involvement Reporting in Research. International Journal of Technology Assessment in Health Care (4). Retrieved from https://pubmed.ncbi.nlm.nih.gov/22004782.
UNM College of Population Health—CPR (2023). Engage for Equity: Community Engagement Survey. Retrieved from https://engageforequity.org/tool_kit/surveys/community-engagement-survey.
UNM College of Population Health—CPR (2023). Engage for Equity: Key Informant Survey. Retrieved from https://engageforequity.org/tool_kit/surveys/key-informant-survey-introduction.