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I recently attended Health Care for All’s (HCFA) 4th Annual Patient and Family Advisory Council (PFAC) Conference in Massachusetts, which was incredibly informative and inspiring. HCFA was a major force behind the passage of the 2008 law that required all Massachusetts hospitals to establish PFACs, and for the past eight years, has provided technical assistance, training and networking opportunities to strengthen patient and family engagement in hospitals.

So, what are PFACs and why do they matter? According to the Agency for Healthcare Research and Quality, PFACs are bodies made up of individuals who have received care at a hospital (or their representative family members) and are able to offer feedback and insights to inform and improve hospital care delivery, policies and operations to most effectively address patient and family needs and preferences. PFACs have the potential to help improve overall systems and processes of care, which can lead to better health outcomes for patients, as well as improve financial performance of health care organizations.  PFACs are a great example how to actively and meaningfully engage consumers in order to realign the health care system and place consumers at its center.

But establishing a PFAC is only the first step. Learning how to make it meaningful is an entirely other story. And that’s what the HCFA conference was all about. It began by offering a three-part vision of what constitutes authentic engagement: First, engagement is purposeful; second, engagement is effective; and, finally, engagement is equitable. The conference covered a lot of ground across these three themes, providing the nearly 300 participants with opportunities to discuss everything from building internal credibility for PFACs, to creating effective meeting agendas, to understanding why PFACs should care about and provide their perspectives around quality measures. Most importantly, the conference provided PFAC members from across the state with an opportunity to network with – and learn from — one another.

One cross-cutting theme of the day was the importance of consumers being engaged at every level, and from beginning to end of all hospital processes. Examples abounded, including in sessions focused on engaging patients in research as partners rather than subjects, integrating patients into hospital committees, and identifying the PFAC’s role in shaping hospital community health assessments and activities in order to best address identified needs.

Another theme was the importance of recruiting a diverse PFAC membership that represents the patient population by race, ethnicity, language spoken, sexual orientation, gender, age, disability status, employment status and so forth. One PFAC’s approach to recruiting and retaining diverse members included developing a Diversity, Equity and Inclusion Council that supports other PFAC members in understanding how to be more inclusive of people from different racial and ethnic backgrounds. Another PFAC in the state is working to adapt educational materials for different age groups, particularly older adults, by ensuring materials are printed in large, bold text and colors that are easy to read. Several PFACs are changing their meeting times or incorporating virtual meetings and social media in order to accommodate members who are working parents or others who have difficulty getting to in-person meetings.

The conference helped me better understand some of the challenges and opportunities PFAC members face as they continue to develop and establish their roles within health care organizations here in Massachusetts. I also walked away from the conference with an increased appreciation of the role consumer health advocacy organizations like HCFA can play – through convenings, trainings and providing a space for PFAC members to connect – in supporting these councils so that their engagement is truly purposeful, effective and equitable.