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Engaging Patients and Family in Our Work: Why it Matters and How We Do It

February 22, 2019

Joan M. Gallegos, M.S.W., R.N.
Director, Utah Community Engagement

Earlier this month I had the pleasure of attending the 2019 Patient and Family Centered Care Partners Conference in Los Angeles, California, with four patient advisers from our Patient and Family Advisory Council in Utah. This annual conference brings together health care leaders, clinical staff, researchers and quality improvement professionals to learn new strategies for maximizing the partnership with patient family populations with sessions that share best practices in patient and family engagement from like-minded representatives across the nation. Leaders from the Centers for Medicare & Medicaid Services (CMS), Dennis Wagner and Dr. Paul McGann, gave the keynote address and emphasized the importance CMS is placing on patient and family engagement.

My personal joy in work comes from spending time with our incredible patient advisers, learning about their perspectives and ways we can best engage with them as partners in improving our health care delivery system.

The conference gave us ample “food for thought” on the evolving role of the patient and family adviser, as described in the following three stages:

  1. Advising: Patients and family members are asked for their suggestions about the best course of action or to recommend an approach that is complementary to their interests.
  2. Co-designing: Patient and family members are equal partners with health care providers in developing and engineering quality improvement initiatives.
  3. Service provision: Patient and family members are part of the health care team and participate in service delivery activities, such as peer-to-peer mentoring and coaching.

Most of our Patient and Family Advisory Councils (PFACs) are at the stage of advising, with some councils still striving to get sustained participation from patients and families. The work of patient and family advising has been both successful and rewarding to all that have been involved in this stage. In the past, Utah’s PFAC members have advised project managers on the content of materials developed for the Blood Pressure Outreach Campaign, a campaign jointly sponsored by HealthInsight and the Utah Department of Health. Advisers recommended the diastolic and systolic terms be explained more clearly so lay people could understand the importance of these numbers to blood pressure control. The correct manner to take an individual’s blood pressure also needed to be addressed in the materials, according to the Utah advisers. This feedback was essential in making these public information materials understandable and meaningful to the patient audience being targeted.

However, to take full advantage of the capabilities of patient and family advisers and to ensure our quality improvement work hits “the mark” in the future, we must move our PFACs from advising to a new level of co-designing interventions with us. To take the adviser’s role to the next level of co-designing interventions, PFAC members would need to become involved with project teams in developing actual quality improvement.

By creating themes from the PFAC’s input that accurately depict the patient and family experiences with health care, alignments to appropriate and timely quality improvement interventions can be successfully designed in this partnership model. Co-designing quality improvement initiatives in an evidence-based manner can only be accomplished when there is a safe environment for the patient and family members to be heard and their input appropriately noted and incorporated. Co-designing interventions with patients as equal partners would surely necessitate a mind shift in how we manage our work. However, I am confident that this would reap rewards in cost-savings and increased effectiveness of our quality improvement work.

Outcomes for patients and families, our ultimate customers, will be improved through moving our patient and family advisers along the stages of engagement. We have an ideal opportunity to test and evaluate the co-designing principles of patient and family engagement in our current initiatives and in the new work ahead of us, and in turn create bigger impact on the health care system than we have otherwise.

About the Author

Joan Gallegos is the Utah director of community engagement for HealthInsight and concentrates her time on national nursing initiatives, behavioral health, patient engagement and HIV/AIDS quality improvement.