Meet Our 2021 Patient Stakeholders

2021 Patient Stakeholders blog header image, woman on laptopPublished May 25, 2021 | At the PKD Foundation, funding PKD research is one of our primary functions. Starting last year, caregiver and patient stakeholders joined the research grant review panel to evaluate applications from the patient perspective. We spoke to two of our 2021 patient stakeholders about what it was like serving in the PKDF Stakeholder Reviewer Program.

But first, what do patient stakeholders do?

Through the program, patient stakeholders read and evaluate research study applications for relevance to the PKD community’s needs and concerns. Alongside PKD experts, this review panel determines which PKD-focused projects receive funding. Glenn Frommer and Linda Herman are two patient stakeholders from the 2021 PKDF Stakeholder Reviewer Program.

 

How did get you involved with the PKD Foundation?

Linda: My husband and daughter both have ADPKD. We started volunteering at local Walks 18 years ago.

Glenn: I was diagnosed with PKD as a secondary finding from an MRI for an unrelated back injury, and I dove headfirst into researching the disease and available support organizations. Through this online research, I came upon the PKD Foundation as the best, most reliable source of both information and disease management.

I attended the biannual conference in Kansas City in 2018, learned a ton about the causes, symptoms, clinical studies, and helpful advice, and as a result, joined the advocacy and research grant committees in 2020.

 

What got you interested in participating as one of the 2021 patient stakeholders?

Linda: I have a medical background and I’ve always been interested in science. PKD is a kidney disease, but it’s also a systemic disease. We hoped when we were trying to have children that there would be a treatment [for ADPKD] before now.

Glenn: My educational background in chemical engineering led me into my career running specialty chemical and packaging companies, which included three decades of managing R&D groups to develop new products. These skillsets— including learning how to assess and rank early-stage product development programs—were a natural fit for supporting the research grant program.

I’ve learned a ton about the disease’s mechanisms and approaches in better identifying the biochemical processes and potential preventive therapies and the development of drug treatments. There’s truly fascinating work going on at dozens of universities around the world.

 

Why do you think it’s important for PKD community members to participate as patient stakeholders on the grant review panel?

Glenn: Community members have a valuable combination of perspectives in the grant review process. We represent the core audience for the targeted results of the grants, so we have the greatest vested interest in the outcomes, and we’ll understand the needs of our community to inform the overall ranking of worthy grant proposals. We get a chance to influence the future of scientific research, helping ourselves and our community and learn a ton in the process.

Linda: As patients, we want to be sure the outcomes of the research will impact the disease in meaningful ways. The ability to communicate with those doing this work benefits not only their understanding of what it’s like to live with the disease, but also educates patients on the complexities of research.

 

How would you describe the PKDF Stakeholder Reviewer Program experience to others who might be interested in participating next year?

Glenn: Each reviewer is assigned four grant proposals to review and provide commentary back to the committee regarding the potential impact that each grant could have on the targeted community, in both ADPKD and ARPKD. Reviews and write-ups generally require about 4-5 hours of total time commitment. This is split between in-depth review of every aspect of each proposal—technical approach, research team’s credentials, hoped-for outcomes, risks, and potential pivots—and providing a written opinion and ‘score’ against several different criteria. Reviewers learn so much through this process and provide valuable insights to the committee.

Linda: Very scientific! Having a medical or science background isn’t required, but it’s helpful in a basic understanding of the specific goals of a project. It’s also very rewarding and a great honor to be able to participate in the process.

 

What aspects did you focus on most while reviewing grant applications?

Linda: What impact the proposal would have on the patient. How it could help either short or long term. There’s been a lot of research over the years. Maintaining a focus on how to bring treatments to patients has been very exciting.

Glenn: I focused my time on two areas. One was researching and learning more about the basic science and technical approaches of the research team to assess the likely impact on the targeted PKD population. The other was in understanding the backgrounds, commitments, and prior work of the research teams. We’re assessing the likely probability of success of these early-stage research projects, so understanding the science and the quality of the team doing the work are important parts of the assessments.

Is there anything else you’d like to add about your experience as a 2021 patient stakeholder? Or the process of the PKDF Stakeholder Reviewer Program?

Glenn: If you have an inquisitive mind and deep caring for the PKD community, helping shape the portfolio of research programs that could lead to future treatments and a cure for PKD is a truly valuable use of your time. And it’s greatly needed on behalf of our community.

Linda: The opportunity to see how research is carried out—the process is quite amazing. I have a new appreciation for how hard this work is and the intense focus and dedication of researchers. They’re the true heroes of our time!

Interested in becoming a caregiver or patient stakeholder reviewer for the PKDF Stakeholder Reviewer Program? To find out more, visit our informational page.

 


The PKD Foundation is the largest private funder of PKD research in the U.S. Since 1982, we’ve invested over $50 million in more than 1,300 research, clinical and scientific grants, fellowships, and scientific meetings. Each year, the Foundation identifies and supports the work of scientists and researchers from around the world.  All to support our vision of ending PKD. Your donations fund necessary research that leads to more effective treatments and ultimately a cure for PKD.

1 Comment

  1. Dwight Odland

    Thank you both for volunteering your time for this critically important task! It’s great to have patients involved in the decisions for where our donations go to have (hopefully) the highest impact!

    Reply

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