Patient Voice

A practical guide to engaging the public in programs and policy development

Writing about patient engagement for a broad audience, I carefully consider how to refer to people involved in this work who are not health care professionals. Patients, family members, informal caregivers, consumers, citizens, activists and more play important roles in healthcare, and it can be challenging to hit the right note when referring to them as a group.

That came to mind as I re-reviewed Including the Patient Voice: A Guide to Engaging the Public in Programs and Policy Development, published by the Betsy Lehman Center in early 2020. The introduction thoughtfully explains that the guide will “use the words ‘patients,’ ‘community members,’ or ‘members of the public’ interchangeably as a reminder to include a variety of voices” (emphasis added).

The guide provides practical advice and tools to help organizations engage members of the public in all of their work, including service on advisory councils, committees and boards. My attention to word choice – apparently shared by the guide’s authors – reflects awareness that opportunities for patients, family members, etc. are too often limited by narrow definition of patient and family or community engagement.

The public should be fully engaged in all health care concerns, and engaged individuals may find themselves switching the hat they’re wearing as they serve over time. A volunteer from the local business community serving on a board committee could easily become a family caregiver or patient for a time and then move on to other roles. The guide points out that it’s one thing to practice patient engagement in primary care and something else to engage with the public in management and planning initiatives.

Six essential elements for engaging the public

The guide’s insight is organized in six “essential elements” that organizations should put in motion as they include community members in various — hopefully many — initiatives:

  1. Set goals for engagement
  2. Gain support and prepare
  3. Identify and recruit advisers
  4. Orient advisers
  5. Facilitate an engaging process
  6. Get feedback and iterate

For each of the six elements, the guide focuses on the rational for the task, pointers for getting started and how to troubleshoot predictable problems and barriers, such as resistance from within the organization. That each element is thought out in detail and potential bumps in the road are honestly discussed make this an invaluable, practical resource.


Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

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