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Navigating the Path Ahead: A Roadmap for Patient and Family Engagement

Posted By Ushma A. Patel, MSPH, Thursday, November 12, 2015

To patients. For patients. With patients. This is how the healthcare system has evolved in how we interact with and engage patients and families in their care. As a healthcare researcher, I was always drawn to the patient and family engagement field. However it wasn’t until recently that my passion for improving the healthcare system deepened. In 2014, I survived preeclampsia, HELLP syndrome and a subarachnoid brain hemorrhage after my daughter’s birth. Luckily I am doing just fine now, but my daughter went on to face multiple health challenges, including open heart surgery at 7 months, eye surgery at 15 months and a suspected genetic condition that will have lifelong implications. As a mom and patient advocate, I know firsthand how important it is to stay engaged with her providers and healthcare – not just for improving her health but also for other children who may face similar battles.

There are many perspectives of what patient and family engagement is, and despite the variations, I think we can all agree that it is critical. The more important question is exactly how we engage patients and families in meaningful ways.

Based on Carman et. al’s Framework for Patient and Family Engagement, the American Institutes for Research developed the Roadmap for Patient and Family Engagement in Healthcare Practice and Research with funding from the Gordon and Betty Moore Foundation. The Roadmap reflects collective input from over 70 stakeholders who represented a variety of perspectives - clinicians, healthcare leaders, patients, families, insurers, payers, and researchers. It includes a vision for patient and family engagement in healthcare, and 8 change strategies to drive action towards increased patient and family engagement: 

  1. Patient and Family Preparation. Educate, prepare and empower patients and families to engage effectively in their health and healthcare 
  2. Clinician and Leadership Preparation. Educate, prepare and empower clinicians and healthcare leaders to partner effectively with patients and families
  3. Care and System Redesign. Redesign care to support partnerships between patients, families, and the healthcare team
  4. Organizational Partnership. Redesign healthcare organizations to make patients and families part of the governance structure
  5. Measurement and Research. Create measures and conduct research to improve care, facilitate changes, and understand outcomes
  6. Transparency and Accountability. Make data and information transparent to promote accountability and enable action
  7. Legislation and Regulation. Encourage patient and family engagement through regulation and legislation
  8. Partnership in Public Policy. Identify and provide opportunities to integrate patient and family perspectives into public policy

These change strategies occur across the 3 levels of engagement – (1) direct care, (2) organizational design and governance, and (3) policy. Within each of these 3 levels, there are opportunities for engagement across a continuum, ranging from consultation to partnership and shared leadership. At the consultation end of the continuum, patients are involved but have limited power and decision-making authority. At the partnership and shared leadership end of the continuum, patients have shared power and responsibility and are active partners in defining agendas, co-creating materials, contributing information, and making decisions. And it’s at this end of the continuum where there’s an opportunity for real change to occur.

Adopting these change strategies can take time, and therefore, the Roadmap also includes 5 simple actions that different stakeholder groups can take immediately such as preparing for their healthcare appointment or inviting patients and family members to share their experience.

There may not be a clear path to how we improve population health and the patient experience or reduce health care costs, but the Roadmap provides a solid starting point to navigate the way. Click here to read more about the Roadmap and Framework.


Since 2009, Ushma Patel has worked as a health services researcher at the American Institutes for Research in their Chapel Hill, NC office. Prior to AIR, she worked for the Lewin Group. In her spare time, Ushma is an avid DIY crafter, and also volunteers as a member of the Patient Advisory Council for the Preeclampsia Foundation and for the Duke Pediatric Cardiac Surgery Center.

Tags:  family  measurement  patient  research 

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Peter Orton says...
Posted Tuesday, November 24, 2015
Dear Ushma,
I read with great interest your compelling personal story, as well as the 8-component Framework for Patient and Family Engagement. We especially note Framework component #1: "Patient and Family Preparation. Educate, prepare and empower patients and families to engage effectively in their health and healthcare."

To that goal, may I introduce you to our behavioral-modeling video approach for patient recovery self-care for both patient and family caregivers. Now with the ability to both personalized health information for the individual patient AND deliver it visually, we have the opportunity to use new technologies to significantly improve health literacy. Our patient-tailored behavioral-modeling design is informed by Social Cognitive Theory principles for behavior change (simple put: "show, not just tell"). Since Jan 2015 we have partnered with Duke University Medical Center Same-Day Access Heart Clinic, and have begun to aggregate significant data on its effectiveness for increasing patient self-efficacy for self-care recovery and reducing hospital readmissions.
If any of this interests you for potential to include in AIR research, I'd be delighted to meet with you, as I live close by in Hillsborough NC.
Best to you for a wonderful Thanksgiving,
Peter Orton, PhD
(919) 477-2600
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