Patient and Community Engagement Resources

Pain and addiction are conditions shaped by biology, psychology, and social determinants of health. People who have lived and living experience (PWLE) with these conditions bring an important perspective to virtually all aspects of research. Their contributions can improve the relevance of the study to the community and the impact of the research on public health.

HEAL seeks effective engagement of people with lived experience in research. Effective engagement pdf  213.44 KB can help achieve health equity by building trust and respecting cultural traditions. It can also facilitate people’s interest in research, help encourage participation, recruitment, and retention, and improve outcomes for the people and communities the research serves.

Effective engagement can benefit the people with lived experience who participate in the research. It can provide them with new skills, opportunities to connect with others with shared experience, and greater awareness of cutting-edge research on their condition.

"Something that's really important for all of us as basic researchers is including patients early on in the process."

- Isabella Romano, University of New Mexico (UNM), Health Sciences Center

Featured Resources

The Patient and Community Engagement Tip Sheets and accompanying worksheets are designed to equip researchers with tools to engage with PWLE and community members effectively. Download the tip sheets to learn how to plan for patient and community engagement, best practices for fostering genuine relationships, and how to disseminate findings in a meaningful and impactful way.

The worksheets below will help you identify partners for each research stage and anticipate any challenges they may face.

Identifying Partners to Engage Worksheet pdf  316.29 KB
Anticipating Barriers to Engagement with PWLE and Communities Worksheet pdf  516.39 KB

Additional Resources

Engaging patients throughout a study can help with designing a research protocol, recruiting participants, collecting data, and disseminating findings.

HEAL Community Partner Committee

The HEAL Community Partner Committee (HCPC) consists of members who have experience with pain conditions and/or opioid use disorder—including patients, advocates, patient liaisons, and/or family members of someone with these conditions.

Planning for Patient and Community Engagement

• Budgeting for Engagement Activities pdf  436.12 KB – Patient-Centered Outcomes Research Institute (PCORI)
• Community-engaged Research and Citizen Science – National Institute of Environmental Health Sciences
• Compensation Framework pdf  83.44 KB – PCORI
• Engagement Plan Template pdf  697.79 KB – PCORI
• Engagement Tool and Resource Repository for Patient-Centered Outcomes Research – PCORI
• Guide for Engaging with Research Partners about Data Analysis pdf  1.85 MB – PCORI
• Toolkit for Patient-Focused Therapy Development – National Center for Advancing Translational Sciences
  • Determine Patients’ Needs
• Patient Engagement in the Design and Conduct of Medical Device Clinical Studies – Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders – U.S. Food and Drug Administration
• Research Fundamentals: Preparing You to Successfully Contribute to Research – PCORI 

Conducting Patient-Engaged Research

• Advisory Panel on Patient Engagement pdf  1 MB – PCORI
• Engagement Rubric – PCORI
• OPRE Methods Meeting: Community Engagement Methods pdf  1 MB (Presentation, 2021 OPRE Community Engagement Meeting Materials, Pediatric/Youth) – U.S. Department of Health and Human Services, the Administration for Children and Families
• Patient Peer Review – PCORI
• PCORnet Principles of Partnership: An Engagement Assessment Tool pdf  213.44 KB – PCORI

Patient and Community Engagement in Disseminating Findings

• Plain Language: Getting Started or Brushing Up – NIH
• Words Matter – Terms to Use and Avoid When Talking About Addiction – National Institute on Drug Abuse
• Person-first and Destigmatizing Language – National Institutes of Health (NIH)

Measuring Patient and Community Engagement

Investigators can use the following resources to assess how well they are doing, with the goals of refining their study approach and increasing the study’s relevance to communities.

Measures for Multiple Audiences

• Assessment Instruments for Measuring Community Engagement – National Academy of Medicine
• Community Engagement Survey – UNM College of Population Health, Center for Participatory Research
• Partnership Trust Tool Survey pdf  395.88 KB – Centers for Disease Control and Prevention, Prevention Research Centers
• The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research – University of Warwick

Measures for Researcher Experience

• On Measuring Community Participation in Research – RAND Corporation
• Community Network Assessment – National Cancer Institute
• Key Informant Survey – UNM College of Population Health, Center for Participatory Research
• Ways of Engaging – Engagement Activity Tool (WE-ENACT) – PCORI

Measures for Research Partner Experience

• Progress in Community Health Partnerships: Research, Education, and Action – Johns Hopkins University Press
• Research Engagement Survey Tool (REST) – New York University

Measures for Coalitions/Organization Members

• Internal Coalition Effectiveness Instrument (ICE©) – University of Nebraska

Patient Engagement at All Stages of Research

Find more resources to assist you at any point in the research lifecycle.