Q&A with Sue Sheridan: Person and Family Engagement

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Photo of Sue Sheridan, patient and family engagement adviser at CMS
Sue Sheridan, CMS

Sue Sheridan, MBA, MIM, DHL, is currently the Patient and Family Engagement Adviser at the Centers for Medicare and Medicaid Services (CMS), where she helps integrate CMS’ Person and Family Engagement Strategy throughout the agency. Prior to joining CMS, Sheridan served as the Director of Patient Engagement for the Patient-Centered Outcomes Research Institute (PCORI).  Before joining PCORI, Sheridan was the external lead for the Patients for Patient Safety program at the World Health Organization (WHO). Sheridan previously spent 10 years in patient advocacy inspired by adverse family experiences in the health care system. She cofounded and is past president of Parents of Infants and Children with Kernicterus (brain damage from jaundice). She also is cofounder of Consumers Advancing Patient Safety, which helps organizations engage patients as partners in developing patient safety solutions.  Sheridan received a bachelor of arts degree from Albion College, a masters of international management degree and master of business administration degree from the Thunderbird School of Global Management, and a doctor of humane letters degree from Adrian College.

Q. The CMS Person and Family Engagement (PFE) Strategy was officially launched almost a year ago. What have been some of your key successes or lessons learned so far?

Our biggest task to date has been to operationalize the Person and Family Engagement Strategy, and we have successfully created a plan to do that throughout CMS. The plan will help ensure that we are engaging people and families in the appropriate areas of policy and program development. This will be a significant and ongoing effort, but now we have more than just a strategy—we have actual boots on the ground. CMS has pockets of person and family engagement throughout the agency already. This is an opportunity to unify and harmonize those individual efforts.

In terms of lessons learned, it is encouraging that an organization of CMS’s size welcomes change. Leadership and staff are truly enthusiastic about person and family engagement. Not all organizations would embrace something new so quickly.

Partnership is a key aspect of the strategy. How have other federal agencies and health care stakeholders adopted PFE in their own initiatives?

Person and family engagement has momentum around the world and is a driver for many organizations. The Food and Drug Administration has established a new patient engagement advisory committee, which kicks off this month. The Office of the National Coordinator for Health Information Technology’s Technical Advisory Committee is doing a lot of patient and family engagement work as well. Most hospitals have Patient and Family Advisory Councils. They are making a difference and providing evidence showing that PFE impacts outcomes. There also is an active community of patients and family members engaged in policymaking, research and organizational design in the United States. I am involved with their listservs and editorial boards, since they provide me with a good pulse on what is happening. 

Do you have a personal patient advocacy story from your own life that puts into perspective what you do every day?

Early in my career, I was headed down the path of an international banking career. But that changed after I had my son. He was five days old when he suffered brain damage from newborn jaundice that was completely preventable. In the 1990s, hospitals had stopped doing routine tests for infant jaundice. A group of moms joined forces and partnered with the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) among other organizations. Through our research, the CDC classified what happened as an emergent public health issue. That helped change the guidelines around testing for infant jaundice.

It was a true partnership; everybody came together. That experience made me see what it was like to be an active patient in helping design research, get it funded, make policy recommendations and see them implemented.

Around that same time, my husband developed a mass in his neck. It was removed, and we were told it was benign. Six months later, he was diagnosed with terminal cancer. The first pathology had shown a malignancy, but it wasn’t relayed to the neurosurgeon or us.

I witnessed how fragile our health system can be. That’s one reason why patients and family members can be great partners in helping create a safer health care system.

How has your past work influenced what you’re doing today at CMS?

After the experiences with my son and husband, I worked with the WHO’s Patients for Patient Safety program and developed a global strategy for patient engagement for different WHO initiatives. In 2012, I became director of the Patient Engagement team for the Patient-Centered Outcomes Research Institute (PCORI), where I developed and implemented programs to engage patients in PCORI activities. Before officially joining CMS in December 2016, I had always admired the agency’s work, had signed the Partnership for Patients pledge and spoken at CMS events. My personal and professional backgrounds were a natural fit for my new role at the agency.

What does the future look like for the PFE group? How is the PFE group or strategy evolving?

We’re hoping to expand the community of people and family members working with CMS. One of our greatest opportunities is to take the foundation that’s already been laid and really embed the strategy throughout CMS. We also want to add more partners and closely align PFE with the Trump Administration’s priority of putting patients first.

What advice would you give QIOs out in the field?

I’d encourage QIOs to think about person and family engagement not only as transactional but as a holistic relationship. It should be embedded in all of their work. We should be bringing patients in as early as possible to talk about the outcomes that matter most to them. They can be a real asset in informing QIOs’ work. It used to be that patient engagement meant bringing in patients at the end of the process to get their feedback. But to be truly impactful, they should be brought in early and often as co-developers of initiatives. When in doubt, ask the patient.