On Target: Jump-Starting Our Push for Specific Patient-Centered Research Projects

December 6, 2012 by Kara Odom Walker, MD, MPH, MSHS

Kara Odom-Walker headshotWe here at PCORI get a steady stream of useful feedback on our research efforts from all of our many stakeholder communities. One of the clearest of those pieces of input has been about the critical need for us to identify specific, high-priority topic areas for study.

In response, our Board of Governors has approved the development of three targeted funding announcements that will seek research proposals on specific topics that are especially meaningful to patients and those who care for them.  These announcements will complement the broad funding announcement process we launched in the spring by, in effect, jump-starting our patient- and stakeholder-initiated approach to topic-specific research funding, one of two complementary paths we’re following as guided by our National Priorities for Research.

The initial topics selected for our targeted announcements are 1) treatment options for uterine fibroids; 2) the safety and benefits of treatment options for severe asthma; and 3) fall prevention in the elderly. Each addresses a medical concern that affects millions of people and raises important unanswered questions about the most effective treatment or prevention approaches, depending on patients’ circumstances and preferences. Our research will focus on providing these patients and those who care for them with trusted information they can use when choosing which prevention, diagnostic or treatment option is most appropriate for them. 

Table showing the topic impact

The three topics were chosen through a multi-step process that built upon previous stakeholder-driven efforts, from across the healthcare community, to prioritize comparative effectiveness research needs. Sources included the Institute of Medicine, Agency for Healthcare Research and Quality, National Institutes of Health, and several other organizations.  We identified nearly 500 questions that these earlier efforts considered worth further study. We sorted this list to identify overlapping questions, ie, questions suggested by at least two organizations.

This resulted in 40 topics. Six PCORI staff then ranked this list using decision-analysis software, using two sets of criteria. The first looked at:

  • Salience: Of obvious and recognizable importance, meaning most people would know this question is important to patients.
  • Short-term feasibility: The study results could be available within a two-to-three-year period.
  • Unmet research need: The research would be unlikely to be funded without PCORI support.
  • Reasonable resource needs: Moderate investments in research could suffice or could leverage existing co-funding opportunities.

These criteria were intentionally designed to identify research topics that had the potential to yield results that could substantially improve patient outcomes over a relatively short period of time. Our desire to identify these topics reflects our understanding of the need that patients, caregivers and clinicians have for high-quality information that can significantly improve their ability to make critical health and healthcare decisions.

Along with these criteria, we reviewed the topics based on PCORI’s merit criteria, which let us focus on questions most important to patients and caregivers.  These criteria, which we apply to all of funding proposals, are:  (1) patient-centeredness; (2) prevalence and impact of the condition; (3) potential to improve the condition through research; (4) impact on healthcare performance; and (5) inclusiveness of different populations.

These filtering processes allowed us to rank-order the 40 topics according to both sets of criteria. We presented the top 25 of these to the Program Development Committee (PDC) of our Board of Governors. The PDC then assessed the potential impact of each on various populations and specific diseases or conditions and narrowed the number to 11.

Chart showing the process by which selected targeted funding announcement topics were submitted and chosenThrough targeted outreach to experts in the field, we then came up with three topics that we believed represented high-priority areas for research that covered a variety of study populations and conditions. The Board advised PCORI staff to develop funding announcements for those three and instructed us to two more topics to consider for possible announcements later on.

In preparing the funding announcements, PCORI will convene experts and stakeholders to refine research questions in each area. We plan to conduct review in early 2013 with panels of multiple stakeholders, as well as seek additional public input, before finalizing and releasing the targeted funding announcements in the first half of 2013. We’ll share details of the funding announcement development process through our website as soon as they are available. These announcements, our first such targeted calls for research proposals, represent another landmark achievement in PCORI’s development as a successful national research organization.

This short-term process for selected targeted funding announcements jumpstarts our long-term topic generation and research prioritization effort, which will create a sustainable, transparent and patient-centered approach to research prioritization and selection.

We are proud of the progress we’re making in developing a strong research portfolio, and we look forward to continuing our work together towards better outcomes for patients.

Kara Odom Walker, MD, MPH, MSHS is a PCORI Scientist



3 Responses to“On Target: Jump-Starting Our Push for Specific Patient-Centered Research Projects”

  1. Dan Merenstein

    After reviewing the webinar slides and this, I am still not convinced that PCORI is truly talking to pts in primary care settings, where most individuals get their care, but instead appears to be talking to interest groups who are already very well represented in the NIH.

    Reply
  2. Kara Odom Walker

    Dan,
    We appreciate your concern and you raise a very important point. PCORI is taking steps to assure that we will be engaging with patients in all care settings. At our October 27th workshop, we invited a variety met with various segments of of patients, ranging from patients and caregivers from rural health areas to those with specific diseases. I am pleased to say our 2013 plan ensures that we continue to expand the breadth of our patient engagement opportunities. Your input is important and thank you for advocating for the voice of the patient. If you would like to speak to a member of our team about your concerns, please feel free to reach out to info@pcori.org (include “patient engagement” in the subject line).

    Reply
  3. Rebecca Zaraya

    Kara, I am a patient suffering from multiple diseases and I have just a few questions for you.

    As for your topic of (1) patient-centeredness – patients are known as persons in context of their own social worlds, listened to, informed, respected, and involved in their care—and their wishes are honored (but not mindlessly enacted) during their health care journey.
    I was at the web site “Annals of Family Medicine” there was much journal content for Patient-centered care.

    (1) patient-centeredness;
    (2) prevalence and impact of the condition;
    (3) potential to improve the condition through research;
    (4) impact on healthcare performance; and
    (5) inclusiveness of different populations.

    This was a very good site to go to. To understand all of the 5 above.

    The link is:
    http://www.annfammed.org/search?fulltext=Patient-centered+care&sortspec=date&submit=Submit&andorexactfulltext=phrase

    The reason why I am writing you, is because I know for a honest fact that patients are only seen but not heard. So when a patient visits their physician, it’s not the patient that doesn’t understand what the doctor is relaying to them, it’s the neglect of their care giver which is the person who takes them to the doctor to speak for them and it’s definitely the doctor who requires to polish up on their listening skills instead of just being an intimidation to their patient. But there is so much more than that. I could write a book about the “Patient” and their care.

    Thank you for your time.
    Rebecca Zaraya

    Reply

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