Help Wanted: Applicants for PCORI’s Two Newest Advisory Panels
One of PCORI’s core principles is that our work is “guided by patients, caregivers, and the broader health care community.” That commitment, noted in our mission statement and emphasized across the range of research we fund, extends from identifying research topics through disseminating study results.
One of the ways we make this promise real is through PCORI Advisory Panels, which include patients, caregivers, clinicians, and other healthcare decision makers. Their expertise and experience are critical to helping us prioritize the comparative effectiveness research questions most important to study.
We set up four such panels earlier this year. We’ve now created two more called for in our authorizing legislation–one to guide the research we fund on rare diseases and another to work with PCORI's Methodology Committee in providing input on clinical trials. Our Board of Governors approved both panels last month. And we’re pleased to invite anyone with an interest to apply through our website.
We’re now seeking members for two new Advisory Panels and open slots on two others.
Advisory Panel on Rare Disease
Our Advisory Panel on Rare Disease will be made up of 12-15 members. One-third will be patients, caregivers, or representatives of rare disease advocacy organizations, the rest clinicians, researchers, policymakers, or representatives of industry or payers. The group will provide recommendations in two broad areas—the conduct of patient-centered comparative clinical effectiveness research in rare diseases, and coordination and engagement with the rare-disease research community.
This overarching panel will also assist us in recruiting ad hoc panels to provide detailed expertise on specific topics for research. Once a specific condition is identified as a high-priority topic, the ad hoc panels will help determine the relative value and feasibility of conducting certain research studies. They will also provide input in the evaluation, design, and conduct of the research we fund.
This approach will give us consistent, broad stakeholder input from the panel, while allowing the flexibility to recruit experts on a specific rare disease selected to study.
Advisory Panel on Clinical Trials
Establishing and following rigorous standards for patient-centered comparative effectiveness research remains among our top priorities. Conducting scientifically sound clinical trials is critical to that approach, making sure the trials employ the right designs and methodologies to produce reliable results relevant to real-world practice.
This is the basis for our Advisory Panel on Clinical Trials, which will support our methodological work by providing expertise throughout the selection, design, and implementation of trials. The panel will have 10-14 members, at least half with technical expertise in conducting clinical trials. At least two members will be patients, caregivers, or representatives of patient advocacy organizations, and one will have special expertise in the ethical dimensions of clinical trials.
In particular, panelists will be assigned to ensure rigorous adherence to PCORI’s Methodology Standards in the design and conduct of trials we support, as well as advise us on priority areas for developing clinical trial methodology and the readiness of trial results for dissemination or implementation.
As new questions arise, panelists may also be called upon to assist with a review of proposed trials, provide guidance on selecting appropriate study outcomes, or lend expertise on other issues, such as patient recruitment, that we may encounter in funding trials.
Next Steps
We’re pleased to welcome applications for our two new advisory panels, as well as for openings on two of our four established panels, which our Board reauthorized earlier this month. Those openings are on our panels on Assessment of Prevention, Diagnosis, and Treatment Options (up to three slots) and Improving Healthcare Systems (one slot). Our two other panels will retain their current members.
The first members of our two new panels will be appointed to staggered two-year terms, with the possibility of reappointment for one additional term. In reauthorizing our four established panels, our Board took a similar approach, approving staggered terms of one to three years.
Anyone with appropriate experience and expertise is invited to apply for any of these open positions. We’re interested in hearing from those who applied for our first four panels earlier this year, but we also invite those who might be new to the process to consider applying.
Applications for both new panels, and for the openings on our two established panels, are due January 10. Selections will be made by late February so that the new and reconstituted panels will be complete in time to meet in the spring. All of our advisory panel meetings are open to the public through teleconference or webinar to ensure transparency and facilitate public feedback on the panels’ work.
Want to know more about our advisory panels? Click here to see their charters, information about current members and their experiences, and summaries of the work they’ve done to date in helping us prioritize topics for potential research funding. We’ll provide information about our new panels as it becomes available. And we’ll do the same for any additional advisory panels we establish in the future.
I hope you’ll consider applying for one of our new advisory panels or take advantage of some of the other opportunities we offer to get involved in our work. But however you may choose to participate, thank you for your continued interest in PCORI’s efforts to improve outcomes for all patients.
Luce served as PCORI’s Chief Science Officer from May 2013 – September 2015