Advisory Panel Experience Informs Perspectives on Health Disparities

Providing equitable care is my passion, but it’s a challenge when patients span two different worlds in the same state.

I care for patients as a pediatric urologist at Seattle Children’s Hospital and at an Eastern Washington outreach clinic. I also mentor University of Washington medical students, residents, and fellows.

Unlike metropolitan Seattle, Eastern Washington is mostly made up of agricultural communities with a diversity of preferred languages, socioeconomic status, race, and ethnicity. However, medical literature has not focused on racial, ethnic, socioeconomic, or gender diversity as much as we would like.

So, are the literature’s findings relevant to the patients we care for?

I wondered if evidence-based medicine really reflected a bias about who was included, and what patient voices were missing. This led me to PCORI, in large part because of their focus on patient-centered outcomes.

On my journey to find the answer, I’ve learned about many stakeholders in patient health care that I was not previously aware of, including visiting nurses and people operating transportation companies. I also hadn’t realized the full scope of these stakeholders’ roles.

And when there are multiple stakeholders and more moving parts, there are infinitely more challenges to the delivery of equitable care. This is what led me to become a member of PCORI’s Advisory Panel on Healthcare Delivery and Disparities Research (HDDR) in 2019.

PCORI brings together healthcare stakeholders, particularly groups that wouldn’t otherwise have a voice at the forefront of research. This gives clinician-researchers, like me, an opportunity to understand barriers to care and how to reduce them. And by barriers, I really want to underscore that I mean the barriers the patients' experience, not what I perceive from a different vantage point.

Finding Our Blind Spots

When trends in research show disparities or less than optimal outcomes for certain groups, it’s important to remember that this translates to individual people having those outcomes.

In other words, if a certain group of patients has a very different surgical outcome than another, and I am a surgeon, then it’s very likely that my patient groups have different surgical outcomes. We have to be honest about that; on the one hand, it’s a wake-up call, but on the other hand, I think everyone in health care has a personal investment in their patients’ outcomes.

As a panelist, I’ve learned that if we are trying to provide equitable care that at the very least uncovers why disparities exist and hopefully eliminates them, we must investigate the blind spots in our own work first.

We all have a lot of them. Many of these blind spots came up in panel discussions about PCORI-funded research and potential future directions. My experience taught me the importance of examining these blind spots and our willingness to change practice. It’s not always enough to change what you do.  Sometimes you have to change how you think.

One discussion that resonated with me was about maternal mortality and maternal health, and how that translates to child health and getting the best start in life. I think society assumes pregnancy is always joyous. However, for many people it’s not an easy time. They struggle financially, medically, and with the logistics of accessing health care. There can also be difficulty navigating a child’s challenges after birth.  This is true for healthy children as well as for those who have special healthcare needs.

So, advisory panel discussions made me think very differently about something with a commonly accepted ideal that we don’t necessarily consider to be a health concern in day-to-day life.

Viewing Solutions Differently

During the pandemic, listening to panelists’ diverse experiences has made a difference in my practice and research. It has changed how I think about the challenges families have faced and made me realize that many geographic areas of our country are mischaracterized as underserved, when they are actually under-resourced. For example, telemedicine has been wonderful for many families, but for many patients without good Internet connections or a safe place for an appointment, it has been challenging, rather than helpful.

So, it’s important to recognize that some quick fixes in health care are not always equitable, or helpful for everyone. These discussions even sparked new ideas for my research projects addressing disparities, including how best to deliver serious news to families via telehealth.

Making Your Voice Heard

I cannot say enough about what being an HDDR panelist has done for me professionally and personally. But I would not have gotten here if someone hadn’t believed in me.

Mentorship and sponsorship for junior faculty members and stakeholders is incredibly valuable, and PCORI truly wants you to share your expertise.

For those considering becoming an advisory panel member, I ask you to remember this: The world is run by people who show up. If you do not show up and share your opinion and perspective, your voice doesn’t get heard, and people will assume it doesn’t exist.

You have to be a part of the process and the solution.