Massachusetts Patient and Family Advisors Engagement in Research

Massachusetts Patient and Family Advisors Engagement in Research

About PFACs Work with Researchers

In recent years, researchers and funders have recognized that research studies are greatly improved by incorporating the perspectives of community members as well as patient and family advisors.

HCFA has been working with a number of Massachusetts PFACs and researchers to strengthen their engagement in research design, implementation and dissemination. Read more about our work here.

What does Meaningful PFAC Engagement in Research Look Like?
HCFA believes that PFACs work with researchers at their hospitals should meet three criteria:
  • Systematic- a process by which
    • member(s) are chosen as potential consumer representatives to study
    • PFAC helps researchers identify qualified and interested advisors
    • members report back to the PFAC about their work
    • PFAC staff help orient and prepare PFAC members
  • Ongoing- involvement is not isolated to one activity or event on the study
  • Meaningful- engagement goes beyond attending meetings, and includes specific engagement in 
    • Planning the study
    • Conducting the study
    • Disseminating the study results

We believe that [patient engagement in research] can influence research to be more patient-centered, useful, and trustworthy and ultimately lead to greater use and uptake of research results by the patient and broader healthcare community.”  PCORI

There is growing national interest in fostering meaningful engagement of patients and consumers throughout the research process – from topic selection through design and conduct of research dissemination of results. One of HCFA’s priorities is to build the capacity of interested PFACs to be engaged in research design, conduct, and dissemination of results.

The resources on this page will help PFACs learn more about research engagement.


                     Ways Patient and Family Advisors Can be Engaged in Research

Resources

Brigham and Women’s Hospital: Patient Engagement Best Practices Resource Document: This document was compiled by the Patient-Centered Comparative Effectiveness Research Center (PCERC) as a guide to the patient engagement process within patient-centered outcomes research (PCOR). It explains patient-centered outcomes research (PCOR) and the importance of the patient engagement.

Learning to “Swim” with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute: This article describes two patients’ experiences of engaging in health care research and shares recommendations for patient-scientist collaboration.

Are We Ready? A Toolkit for Academic-Community Partnerships in preparation for Community-Based Participatory Research: This document from South Carolina Clinical & Translational Research Center for Community Health Partnerships leads community members and researchers through a process to check whether they are “ready” to partner in doing research. The goal is to promote successful, sustainable partnerships by establishing communication and checking whether partners are a good fit before moving forward.

Building Healthy Partner Relationships: This document from Alliance for Research in Chicagoland Communities provides questions to ask your organization and potential partners before doing research together. It also offers suggestions for establishing a healthy relationship and approaches for handling conflict.

PFAC Engagement in Patient-Centered Outcomes Research, 2016This report outlines the current state of research engagement in Massachusetts PFACs from two statewide surveys and interviews.

Promising Practices of Meaningful Engagement in the Conduct of Research: This PCORI webinar from 2013 outlines the role of patient and family engagement in research.

Implementing a pragmatic framework for authentic patient–researcher partnerships in clinical research: This article outlines a framework for PFAC advisors to engage with hospital researchers. It maps out the steps of the research process with the role each partner plays.

PFAC Engagement in Research: Including consumers in the research design, implementation and dissemination is an important component of consumer engagement in Patient and Family Centered Care. This webinar recording discusses how PFACs can become (more) engaged in research at their institutions.

Coming Soon: Best Practices for Meaningful PFAC Engagement in Hospital Research: HCFAs PFAC Leadership Council Best Practices Committee will release this guide in fall, 2016. This web-based guide will be designed to assist individual members and PFACs in building skills, assessing current PFAC activities related to research, and planning and implementing practices to increase the level of PFAC engagement in research being conducted at hospitals in order to help shape the direction and focus of research to be better focused on patient needs. This guide’s objectives include:

Objectives
  • Outline best practices as to PFAC engagement in research design, implementation, and dissemination
  • Outline best practices to systematically select members to participate
  • Provide resources on meaningful PFAC engagement with research