“Infrastructure” is one of the buzzwords of the moment, and “research infrastructure” is mentioned just about as often. But here at PCORI, we know that to fulfill our mission, it will be essential that we improve the nation’s underlying capacity to conduct patient-centered outcomes research (PCOR) – rapidly, efficiently and repeatedly.
Doing so will take building a data infrastructure as well as improving analytic methods and training of researchers, patients and other stakeholders to do this research. The need for high-quality, patient-centered, comparative effectiveness evidence is not going to go away. So these steps will be needed to make certain that patients and those who care for them have the information they need, now and into the future, to support decision making for the health and healthcare choices they face.
One of PCORI’s five National Priorities for Research, “Accelerating Patient-Centered Outcomes Research and Methodological Research,” addresses this need. As our National Priorities note, “the nation’s capacity to conduct patient-centered comparative effectiveness research quickly and efficiently remains extremely limited.”
We began to explore infrastructure issues in depth in July at our first National Workshop to Advance the Use of Electronic Data in Patient-Centered Outcomes Research. Based on feedback from the workshop, which I wrote about in a July 20 blog post, as well as ongoing dialogue with the National Institutes of Health and the Agency for Healthcare Research and Quality, we are beginning to issue funding announcements to assess the landscape and solicit more information from the community.
Developing a Comprehensive Inventory of Research Networks
On November 2, we issued a request for proposal (RFP) for a “Comprehensive Inventory of Research Networks.” Responses are due by November 26, and we’re accepting questions about the RFP through November 16 by email to email@example.com. The goal of the request is to help us understand the diversity of approaches and the barriers, capacity, and potential for adapting current infrastructures to provide scalable platforms conducive to conducting PCOR.
We’re very interested in the concept of a clinical research infrastructure that can serve as an efficient, reusable platform for conducting comparative effectiveness research, including both randomized and observational studies, that engages patients at the center of the process – in building, governing and using the infrastructure. We believe that such infrastructure is integral to sustaining successful PCOR.
Additional Requests for Information and Funding Opportunities on the Horizon
Building on the RFP, we will issue a separate request for information (RFI) this month to gather additional information from individuals or organizations familiar with research data networks and patient research networks and the opportunities they may provide for conducting PCOR. This information will assist PCORI as it considers development of a funding announcement in this area.
In addition to learning more about the known infrastructure landscape, we hope to discover previously unappreciated opportunities that could facilitate meaningful high quality PCOR. As one example, we’d be interested in learning about the capability of current or future networks to rapidly identify and involve large numbers of eligible patients in randomized clinical trials.
In addition, we will soon issue a PCORI Funding Announcement (PFA) on “Improving Methods for Conducting Patient-Centered Outcomes Research.” This PFA will solicit studies to address gaps in methodological research relevant to conducting PCOR. We anticipate committing about $12 million to support approximately 14 contracts in the first cycle of this PFA.
We hope that the results of these studies will enable the research community to conduct PCOR with greater validity and efficiency. They may also inform future iterations of PCORI’s Methodology Report and its standards. The improvement of existing methods will benefit all stakeholders, including researchers planning investigations, policy makers weighing the value of healthcare interventions, and patients, clinicians, and caregivers facing healthcare decisions.
We’re very excited that our work in “Accelerating Patient-Centered Outcomes Research and Methodological Research” is expanding rapidly, and we invite you to help us as we continue to make progress. To stay informed about this and all of our research funding opportunities, please subscribe to our e-mail list or check the Funding Opportunities section of our website frequently.
Dr. Selby is PCORI’s Executive Director
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