Institute for Patient- and Family-Centered Care
Transforming health care through partnerships

Engaging Patient and Family Advisors in Research

Engaging PFACs in Stages of Research

PFACs are valuable partners with researchers, however a PFAC’s role in research projects has to be defined by its preference for the level of engagement and is typically limited by the PFAC’s other priorities. This doesn’t mean that activities PFACs can participate in won’t yield meaningful results for research efforts. It just demands that researchers are thoughtful in planning how they want to engage PFACs.

Examples of Research Activities for PFACs

Examples of Research Activities for PFACs

Often, PFACs are asked to participate in a perfunctory, less meaningful way than they are capable of or desire. For example, some report that researchers present project findings and dissemination plans to them without any prior PFAC involvement or the PFAC is asked to provide feedback on materials that are at a final stage. Because PFACs are experienced in partnering with health care professionals, if given the opportunity they can help shape a research project in all stages from pre-planning to dissemination.

The following chart details potential activities that PFACs can participate in within the different stages. In the right hand column are questions that PFACs and researchers can use to spark rich and purposeful discussions.

Activities and Questions for PFACs in Stages of Research

Stages PFAC Potential Activities Questions for Advisors
Pre-Planning
  • Identify meaningful research topics and potential questions.
  • Assist in prioritization of research questions.
  • Host community meeting to obtain broad input.
  • Assist in planning and facilitating a community health needs assessment.
  • What matters to you and other patients/family members?
  • What would you like to know?
  • What would be most meaningful to you and other patients/family members to know about this topic/condition/diagnosis/care process?
Planning
  • Review what is known and provide ideas for gaps in knowledge from a patient/family perspective.
  • Develop a set of questions to query patients/family members about challenges and solutions.
  • Advise on protocols and questions for surveys/interviews and provide input about planning interventions and selection of outcomes.
  • Review proposal and provide feedback.
  • Write a letter of support.
  • Review materials/forms for patients and provide feedback (e.g., information about eligibility and enrollment, informed consent, surveys/questionnaires).
  • What do you know now?
  • What would you like to know?
  • What would be most meaningful to you and other patients/family members to know about this topic/condition/diagnosis/care process?
  • How do different choices (e.g., treatments, medications, care processes) affect you?
  • What do you think might make patients hesitant to enroll in this study?
  • What information is critical for patients to know to decide whether or not to participate in study?
  • When is the best time to approach patients about enrolling in the study?
  • Do you have any concerns about the eligibility criteria?
Pilot
  • Review results and provide feedback for changes to study.
Note: Questions listed above in the Planning Stage are appropriate to use in this stage.
Data Collection and Enrollment
  • Receive updates about enrollment progress and advise as needed.
  • Present updates about progress of research study to health care providers and patients/families/community.
  • How can we improve recruitment strategies to increase enrollment?
Analysis
  • Discuss the interpretation of findings and the study’s conclusions.
  • What do the results mean to you?
  • Do the conclusions reached by researchers make sense?
  • Is something significant being missed?
  • What will the findings mean to patients/family members?
  • Are questions left unanswered?
  • Does the study trigger additional questions to be studied?
Dissemination
  • Create compelling and understandable summaries of research and findings for patients/families/community.
  • Identify organizational groups/committees and community groups that should be informed about study and findings.
  • Present findings to health care providers and patients/families/community.
  • Who needs to know about this study?
  • How do you find information to help you make decisions about your heath care?
  • What are the best ways to inform patients/families/community?
  • How can patients/family members use these findings in shared decision-making with their health care providers?

Highlight from the Field: Moffitt Cancer Center

Moffitt Cancer Center’s PFAC has a longstanding commitment to providing input to Moffitt’s IRB-approved Total Cancer Care (TCC) Protocol. Since 2006, patient advocates and advisors have been instrumental in contributing to personalized medicine and the clinical research process by empowering patients with access to their own information and data through patient portal, contributing to the development of an innovative, on-line video consenting process, and improving the readability of patient education materials including the TCC brochure. The photos show the “before” and “after” brochures.

Before

TCC Brochure (Before)

After

TCC Brochure (After)