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Pushing the Boundaries of Engagement in Health

April 30, 2020

At a conference earlier this year, a woman was trying to explain why she had decided not to serve on an influential state health policy panel. For years, she had been an outspoken health advocate; she and her two children are dealing with a rare genetic condition that has given her firsthand knowledge of the strengths and weaknesses of our healthcare system. Her insights had earned her an invitation to the panel, but she realized that even though the state would pay for her travel to panel meetings, the fact that the reimbursements would not come immediately meant that her participation would be a burden for her low-income family. “I was offered a seat at the table,” she said, “But I couldn’t afford a chair.”

“I was offered a seat at the table,” she said, “But I couldn’t afford a chair.”

Community Voices for Health (CVH), a new initiative  led by Public Agenda and Altarum, and supported by the Robert Wood Johnson Foundation (RWJF), is designed to address this fundamental challenge in the ways we approach health and health policy. It aims to develop ways to make our system for public engagement more equitable and more empowering. This was a critical imperative before the COVID-19 pandemic, and the need is even more apparent now.

Giving people a more meaningful voice in policymaking helps states that are struggling to make policy decisions about healthcare and the social determinants of health. Many state legislatures are either stuck in partisan gridlock or simply disconnected from the daily needs and goals of their constituents – particularly people who belong to communities that are politically marginalized and historically underserved. Legislators, staff, and residents often lack the information they need to make smart decisions, and so our healthcare, social service, and public health systems don’t benefit the people they are intended to serve.

But there is an even more fundamental benefit to supporting better engagement in health. Many studies have shown that improving our health is not just about getting better health care: a huge part of the challenge is strengthening our social networks and addressing the social determinants of health, like housing, poverty, and safety. More than ever, it is clear that our physical health depends a great deal on whether we are connected to family, friends, and neighbors, as well as health professionals. Are other people looking out for us, and providing help when we need it? Are we able to work together, in small informal ways and as part of larger community efforts, to help people get better housing, find jobs, and make our neighborhoods safer? Both of those kinds of personal and community-driven activities are critical to our mental and physical health. Even in these months of social distancing, staying connected is important to our health.

“…improving our health is not just about getting better health care: a huge part of the challenge is strengthening our social networks and addressing the social determinants of health, like housing, poverty, and safety.”

To remedy these gaps at both the local level and the state level, we need deeper engagement. Furthermore, the levels reinforce each other: the more people who are engaged at the local level, the more likely it is that they will influence statewide policy decisions; and when people know that they can have a voice at the state level, that gives them more reason to engage locally.

The Community Voices for Health project, which began its on-the-ground work in six states in April, is focused on these two related challenges. The six state organizations that are recipients of CVH grants are Bloomington Health Foundation/Citizens for Community Justice, Inc. (Indiana); Colorado Consumer Health Initiative (Colorado); Georgia Watch, Inc. (Georgia); Kenny Guinn Center for Policy Priorities (Nevada); Presbyterian Healthcare Services/NM Alliance of Health Councils (New Mexico); and Pennsylvania Health Access Network (Pennsylvania). The goal of CVH is to build stronger engagement infrastructure that involves a broader range of people, especially marginalized and underserved communities – so their voices are heard in healthcare policymaking decisions, their efforts to solve problems are supported, and their community networks are strengthened.

What do we mean by engagement infrastructure? What we’re talking about – and what seems to make the most difference according to the research – are opportunities that involve large, diverse numbers of people on a regular, ongoing basis to connect, learn, solve problems, and make decisions. The Shaping Health report, a project of the Training and Research Support Centre, was influential in the planning of CVH. The report describes many different examples of engagement infrastructure, in places as far apart as Canada, Kenya, Slovenia, and Vanuatu. Part of what Public Agenda will be doing in CVH is helping the state teams identify existing examples of sustained engagement, supporting teams to create new engagement opportunities, and connecting people in those places to  facilitate  learning  and contributions toward  statewide policy decisions. 

This should make engagement more:

  • Inclusive and sustained, by expanding engagement techniques and involving previously marginalized communities;
  • Informed, by supporting community-driven priorities with sound evidence surfaced through community-engaged research efforts; and 
  • Influential, by building stronger, more sustainable channels for communication between citizens and policymakers.

In these ways, the organizations working together on Community Voices for Health can both bring people to the table and bring the table to them.

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Matt Leighninger

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