Tapadh Leat!* For Global Lessons on Consumer and Community Engagement

Now that winter is fully upon us (see, e.g., last week’s “bomb cyclone” along the East Coast of the U.S.), I find myself reflecting back on my past few months of work at the Center. Without a doubt, one of the highlights of this past fall was participating in the Shaping Health conference in Aberdeen, Scotland. Sponsored by the Robert Wood Johnson Foundation and hosted by the Training and Research Support Centre and the University of Aberdeen, Shaping Health brought together 32 delegates from all over the world to discuss one simple idea: “social participation in health.” This phrase refers to people’s individual and collective power over, and involvement in, the conditions, decisions and actions that affect their health and health services. As a staff member of an organization whose raison d’être is consumer and community engagement in health, it was safe to say I was “among my people” at this global gathering!

Much of the three-day meeting focused on sharing lessons from the past year’s work in five sites in the United States and one site each in 12 other countries. Representatives from Australia, Canada, Ecuador, India, Zambia and Vanuatu generously shared details of their work, as did those from Brazil, Chile, Kenya, New Zealand, Scotland and Slovenia.

While learning about the disparate and creative approaches employed for increasing social participation – community health workers, participatory budgeting, youth theater groups were just a few of the case examples – we found many common messages. The most resonant message was this: Participation is a vital means for improving health. More than this, it is an end in itself. It is a social right and a reflection of democratic social values. This is what we mean at the Center when we talk about the importance of consumer engagement. A growing body of evidence supports the idea that engaged or empowered patients have improved health outcomes. At the same time, people and communities have a right to be involved in the decisions that affect their health. To use a phrase most often associated with the disability community, “Nothing About Us Without Us!”

Over the course of the meeting, participants also identified dozens of tangible transferable lessons that I found nicely connected to some of the Center’s work. For instance:

  • “Mentorship and development of community members’ literacy and power as activists” The Center’s Lift Up Your Voice! training program educates, engages and empowers participants to use their own experiences to become health care advocates.
  • “Providing training for people to be able to navigate formal spaces when needed” Our workshops for members of Community Advisory Committees train participants on being effective advisors to their health plans, hospitals and/or state bodies.
  • “Approaching communities without an agenda; for people to determine their priorities” Our Putting People First curriculum  assists local community groups that want to get more involved in the hospital community benefit planning process.
  • “Community knowledge is valuable and does not always translate into ‘data’” The Center works to collect and amplify the individual experiences of consumers by sharing their stories, using narrative as well as data to help communities recognize the challenges, and successes, of our health care system.

Our meeting concluded with a beautiful Scottish song sung by one of our Aberdeen hosts. The song, ‘Freedom Came Ae Ye,’ describes a wind of change blowing through Scotland and the world at large, sweeping away exploitation and imperialism.  

Let 2018 bring a wind of change that values the experiences and power of people and communities and brings them to bear in shaping better health for all!   

*Scottish Gaelic for “Thank You!”