Abstract
We have described a path, from the initial recognition of a comparative research question through to conducting and analyzing the research to the dissemination of findings, that involves patients and other stakeholders all along the way. We call this “research done differently” and believe engaging patients, caregivers, clinicians, and others at every step holds the key to making research more relevant and, hence, more implementable. We suspect that this strategy would be applicable and beneficial across a range of clinical and health services research, not just CER.
Patients, caregivers, and clinicians face many complex decisions, choosing between a range of options for preventing, diagnosing, or treating a disease or condition. They come to these decisions with a wide range of values and preferences. It makes sense to us that these end users of research products could enhance research activities.
We look back at 2012 as a year of significant progress toward advancing our goals. We established our National Priorities for Research and Research Agenda, began building an ever-growing community of patient and other stakeholder partners, adopted new standards for patient-centered CER, and approved nearly $72 million in research funding—$31 million for 50 pilot projects and another $40.7 million—in our first round of primary research awards. These milestones, along with a growing staff of talented professionals, position us well to take major strides toward making more than $300 million available over the next 12 months to fund additional patient-centered outcomes research (PCOR) projects.
We know that, for all the work we've done and momentum we've gained, we and our research partners have a big task ahead. Changing research practice, after all, is very difficult. It will require significant changes in research-related culture and attitudes. It requires new knowledge and skills. It requires changing some of the professional incentives for researchers in academia, industry, and within health care delivery systems. It will require change and openness in the way stakeholder groups interact and collaborate with each other. In 2013, we hope to contribute to making some of these changes a reality.
For example, we know solid methods are the foundation of solid research. So this will be the year we start promoting adherence to and ongoing refinement of the initial set of PCOR methods standards drafted by our Methodology Committee and adopted by our Board of Governors. But mere publication of these standards won't change practice; we need to seek the active participation and help of the entire health care community in this effort. You'll be hearing much more about how we plan to promote their implementation—and how much we hope we can count on your help.
We realized a major milestone just as 2012 was ending—completing our first primary funding cycle in response to PCORI's initial broad funding announcements, released in May, in 4 of our 5 research priority areas: Assessing prevention, diagnostic, and treatment options; Improving health care systems; Communication and dissemination research; and Addressing health disparities. We issued a funding announcement in November for our fifth priority area
This year, we'll continue to release these funding announcements every 4 months, which will dramatically increase the support available for studies in each area. We also will proceed with 2 rounds of funding under our fifth priority on the methods of PCOR.
This also will be the year in which PCORI begins to focus on specific research topics. We are building the infrastructure, in the form of multistakeholder advisory panels, to efficiently review research ideas proposed by any stakeholder and build a focused research agenda for each of our priorities. This approach embodies PCORI's first principle of including patients and other stakeholders in all aspects of the research process. We are extremely excited to get this infrastructure in place and functioning. We invite you to watch closely over the next 2 months as we announce the formation of these panels and invite interested stakeholders to join a panel.
As we move ahead with our funding, our selection criteria for both the broad and targeted research announcements will remain tightly focused on our patient-centered mission. Research contracts will be awarded only to projects that hold the promise of changing practice, effectively engage patients and the community in all aspects of the research process, and address questions that matter to patients.
We are hopeful that this distinctive approach to prioritizing and evaluating research ideas will produce research findings that are more likely to improve patient outcomes. But we understand that these priorities will require some researchers to adjust the way they think about the research they choose to do when seeking PCORI funding. We are keen to work with the entire research community—seasoned professionals, new investigators, and the stakeholders with whom they will partner—to help everyone better understand our programmatic goals and our unique funding criteria.
Because we view engagement as key to seeing that the work we fund is most meaningful to patients and those who care for them, we have big plans to enhance our already robust engagement efforts this year. Among those ideas: • Growing our application reviewer community and our process for recruiting, training, and involving reviewers in our work more broadly. • Convening advisory panels to inform our overall work and provide guidance on specific topics for research. • Awarding “micro-contracts” to help patient and stakeholder groups and researchers collaborate better and more fully and pursue particularly innovative projects at the community level. • Launching a “PCORI Ambassadors” initiative designed to tap into growing community interest in our work as a way to further guide us. • Regional engagement events to obtain input on many aspects of our work. • A series of focused roundtables with stakeholder communities and workshops on specific research issues.
Details of these and other engagement opportunities will be posted in the Get Involved section of
This also will be the year that we put increasing emphasis on one of the particular core responsibilities outlined in our establishing legislation—dissemination of research findings. Throughout the year, we will focus on building networks and communities through engagement to be well-equipped, trusted, and eager receptors of and conduits for PCORI-generated research. Good research takes time to complete, but it's only valuable if it is widely used and leads to more effective care. That's one outcome we take especially seriously.
If our list of 2013 resolutions is long and ambitious, it is because we understand the urgency felt by patients, those who care for them, and the health care community broadly to have access to better information to support clinical decisions. PCORI was created to help fill the gap in our understanding of which prevention, treatment, and care options will result in the best outcomes for patients and, in so doing, improve the health and health care experience of millions of Americans.
The key to our success in 2013 is the same as it has been since we were established—our ability to solicit and incorporate perspectives from the entire health care community as we advance and refine our work. Our growth and accomplishments in 2012 are a direct reflection of that support, and that's why we're so optimistic about our future.