Advisory Panel Experience Informs Perspectives on Health Disparities
About Us
- 2023 Annual Meeting
- About PCORI
- The PCORI Strategic Plan
- Governance
- Evaluating Our Work
- PCORI's Advisory Panels
- Procurement Opportunities
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Provide Input
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Past Opportunities to Provide Input
- Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care (2023)
- PCORI's Proposed Research Agenda (2021-2022)
- Proposed National Priorities for Health (2021)
- Proposed Principles for the Consideration of the Full Range of Outcomes Data in PCORI-Funded Research (2020)
- Proposed New PCORI Methodology Standards (2018)
- Data Access and Data Sharing Policy: Public Comment (2017)
- Proposed New PCORI Methodology Standards (2017)
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
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Past Opportunities to Provide Input
- Leadership
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.
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.
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.
PCORI Advisory Panel Applications and Nominations
PCORI is seeking applications and nominations for open seats on its advisory panels: health disparities and delivery research, patient engagement, clinical trials, rare disease, and clinical effectiveness and decision science. Membership on an advisory panel offers the opportunity to work with other healthcare stakeholders to provide crucial input on the direction of PCORI-funded healthcare research.
More information on PCORI’s advisory panels can be found here. Applications and nominations are due March 31, 2021. Click here to get started.
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.
The views expressed here are those of the author(s) and not necessarily those of PCORI.
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