Published July 28, 2020 | Funding research is a primary function of the PKD Foundation. Each year, a research grant review panel combs through applications to determine which PKD-focused projects will receive funding. For the first time, PKD patients and caregivers were added to the grant review panel. We sat down with Kristee Adams and Dwight Odland to hear more about participating as patient stakeholders on this year’s panel.

What got you interested in participating in the research grant review panel?

Kristee: I work as a research administrator for general internal medicine at the University of Pittsburgh. As an administrator, I work near the research but not in the research itself. Because of my role, I encourage my kids and me to take part in studies within the university. Research is key to moving medicine and science forward. Being able to participate in the grant review panel was another way for me to be involved with research. Dwight: When the Foundation decided to include the patient voice in grant reviews and scoring, I volunteered because I believed that my recent experience with reviewing and scoring grant applications through the Department of Defense would be directly applicable. I also thought I could mentor other volunteers on the patient team and build their confidence.

Why do you think it’s important for PKD community members to participate in the grant review panel?

Kristee: Members of the PKD community raise money, awareness, education, and advocate for PKD. In raising money for research, I think it’s great for the PKD community members to see first-hand where that money goes. To be involved in the decision of funding completes a loop—from fundraising to research. Dwight: Like in every aspect of our lives, including diversity in backgrounds and points of view on a team leads to better decisions. In the end, the team of scientists and stakeholders selected a diverse mix of projects. Some have a long-term focus that could lead to genetic treatments, and others focus on short-term results that could be achieved by various lifestyle modifications. Since this is the first-time research awards had such a high number of projects that could lead to near-term results, I believe the patient reviewers had an influence in this balance of long-term and short-term projects.

How would you describe the research grant review experience to others who might be interested in participating next year?

Kristee: I was worried that the grants I was going to be reviewing were way over my head and, for the most part, they were. When I slowed down and reread the summaries, I was able to make sense of it and apply it to what I, as a patient, would want in research. The day we were all getting together online for the final review was exciting. I had my opinions and my concerns listened to by physicians and researchers, and what I had to say actually made a difference. Dwight: We were assigned a number of grants and trained on what to analyze and how to evaluate and score different aspects of each application. I found that I performed much more thorough reviews when I concentrated on one at a time. Each grant took me about an hour to read, consider, write my analysis, and score. It’s important to do a good job on the write-ups because you need to justify your score to the team, but also you want to give helpful feedback to the applicant, especially if the grant is going to be scored lower. You should describe what could be improved, what concerned you, etc. so that they could submit a better grant next time. It’s very important to remember that the worldwide PKD research community is relatively small and we’re all in this together. Anything you can do to help them improve for next time is of long-term benefit to all of us.

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

Kristee: While reviewing the grant applications, I was most focused on two questions. “Would I participate in this study? Would I have my kids participate in this study?” In addition to the likelihood of participation, I concentrated on innovation and studies working from previous studies to further already existing findings. I read each of the grants as a patient with PKD. With each grant, I kept in mind, “How can this impact me and my PKD community?” Dwight: I didn’t really come into this with a particular focus area, and I don’t advise doing so. I read each grant application with a critical eye, analyzing completeness, achievability, and impact (long and short-term) to PKD patients. Some research may take decades to produce a result, but if it could lead to a genetic “cure” or treatment, it has a great deal of value. Other research focused on diet choices, for example, might produce results right away that might slow progression for many patients.

Is there anything else you’d like to add about the research grant review process or your experience?

Kristee: I’d just like to thank the Foundation for the opportunity to participate in the PKD research grant review process. It made me feel more connected to what was going on in PKD research as well as providing me with a voice in what’s important to PKD patients. Dwight: You don’t have to be a scientist to be able to understand and score these applications. Grants are required to have a plain-language abstract summarizing the key points. Patients have a unique point of view that scientists do not. The PKDF training is excellent, and there’s someone available to answer your questions as you’re going through the process.

The PKDF is inviting applications for new members of our Stakeholder Review Committee. 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 who look for ways to treat and eventually cure PKD. Our vision is to #endPKD. Donations fund necessary research that leads to more effective treatments and ultimately a cure for PKD.