PIPC’s 6th Annual Forum: CER in the Real World: The Value of PCOR
On December 3rd, 2015 at the Reserve Officers Association in Washington, D.C., the Partnership to Improve Patient Care (PIPC) hosted its 6th Annual Forum, entitled “CER in the Real World: The Value of Patient-Centered Outcomes Research,” for experts to discuss the role of the Patient-Centered Outcomes Research Institute (PCORI) in the health care system. For years, advocates have urged for the rise of patient-centered care, but what exactly does patient-centeredness mean? Patient-centeredness begins with the development of evidence that patients can use to support improved health decision-making, often including a special type of comparative effectiveness research known now as patient-centered outcomes research. Policymakers, payers, and advocates often use terms like patient-centeredness, patient engagement, and patient empowerment. Yet, just using the right terminology does not necessarily indicate a policy that achieves outcomes that matter to patients. This year’s discussion highlighted the creation of the Patient-Centered Outcomes Research Institute (PCORI) and its implications for achieving outcomes that matter to patients.
The Panel
I was able to hear from concerned stakeholders of all types – patient advocates, former Senate staffers, and an official from PCORI – while investigating the issues that are critical to the future of patient-centered care. Panel 1 consisted of Sarah Kuehl Egge, Senior Manager at the Washington Counsel of Ernst and Young and Mark Hayes, Principal at Hayes Health Policy Strategies. Both panelists were Senate staffers when PCORI was created by the Medicare Modernization Act, Ms. Egge with the Senate Budget Committee, and Mr. Hayes with the Senate Finance Committee. Panel 2 included Linda House, President and CEO of the Cancer Support Community; Andrew Sperling, Director of Federal Affairs at the National Alliance on Mental Illness; and Jean Slutsky, Chief Engagement and Dissemination Officer at PCORI. I was thrilled to be on a panel with renowned experts in patient-centered research and did my best to provide insight from my experience as a policymaker and a patient.
The Forum
I emphasized the dynamic nature of the topic at hand and the renewed interest in comparative effectiveness research (CER), including work of PCORI. However, putting the patient at the center of research is only effective if that research can be disseminated effectively – empowering the voice of patients rather than simply publishing data. For the future of CER, successfully communicating research results to patients and clinicians will be as important as the findings themselves. This emphasis will help maintain the transformative trend of moving the patient towards the center of medical research, while also promoting the next level of patient involvement: patient-directed research.
Panel 1
The first panel discussed what they envisioned for PCORI when Congress was debating its creation and how closely the institute has followed congressional intent in the years since. Both Mr. Hayes and Ms. Egge emphasized the contemporary “bipartisan support” for an independent institute such as PCORI to complete patient-centered research and “inform clinical, patient, and payer decisionmaking.” Mr. Hayes added that from the beginning, PCORI was “not about cost-effectiveness,” an important distinction that is too often forgotten. As with so many things in Washington, the panel identified maintaining funding as the most contentious problem confronting PCORI, especially given its inclusion in the annual appropriations process.
In talking about PCORI’s history, it is impossible not to see the role of the patient evolve along with the institute’s work. The panelists and I agreed that one of PCORI’s greatest contributions has been to actively move the concerns of the patient into the research setting. Mr. Hayes rightly noted that defining what “patient-centeredness” truly means in a research setting was a very positive step forward, even if the system is still basing outcomes on some measures that are not indicative of a patient’s experience. Despite some outdated measurements, the overall progress towards a more patient-centered system is undeniable – more than ever before, researchers, physicians, patients, and policymakers are all paying attention to what happens outside the hospital when thinking about outcomes. It may not be completely understood or appreciated yet, but this marks the beginning of a new era in healthcare.
Panel 2
The second panel focused more on PCORI research priorities and the institute’s ability to disseminate findings to patients. Mr. Sperling was particularly complimentary towards the institute in this area, suggesting that PCORI goes much farther than any National Institutes of Health (NIH) bodies that complete other medical research. There is little doubt that the future of patient-centered medical research is tied hand-in-hand with dissemination, and it was good to hear from patient groups that PCORI’s efforts truly do make a difference. The work is far from over, with PCORI due to publish a number of studies online within the next year to continue their push towards broad communication of research findings, but again, this is an area where progress has been made and PCORI should feel proud of the strides it has made.
A question from the audience focused on PCORI’s role in promoting patient advocacy, with Ms. Slutsky answering that the institute does not provide resources for advocacy, but does offer support. Finding patients and encouraging them to speak up can often be a difficult and frustrating endeavor, but it is an absolutely vital one to ensure that patients are the advocates rather than the group being advocated for. It’s an important distinction that I’m happy to say has been recognized and addressed by PCORI. Programs such as PCORI’s Pipeline to Proposals initiative are a good way to encourage patients to participate in patient-centered research. As Mr. Sperling succinctly put it, the best way for patients to “participate in research is to engage with PCORI.”
Closing Thoughts
Culture change has never been easy – I saw that firsthand when I worked to pass the Americans with Disabilities Act 25 years ago. For patient-centeredness, no single actor will be able to unilaterally change the status quo, but PCORI has been an important ally in moving care in the right direction.
The Panel
I was able to hear from concerned stakeholders of all types – patient advocates, former Senate staffers, and an official from PCORI – while investigating the issues that are critical to the future of patient-centered care. Panel 1 consisted of Sarah Kuehl Egge, Senior Manager at the Washington Counsel of Ernst and Young and Mark Hayes, Principal at Hayes Health Policy Strategies. Both panelists were Senate staffers when PCORI was created by the Medicare Modernization Act, Ms. Egge with the Senate Budget Committee, and Mr. Hayes with the Senate Finance Committee. Panel 2 included Linda House, President and CEO of the Cancer Support Community; Andrew Sperling, Director of Federal Affairs at the National Alliance on Mental Illness; and Jean Slutsky, Chief Engagement and Dissemination Officer at PCORI. I was thrilled to be on a panel with renowned experts in patient-centered research and did my best to provide insight from my experience as a policymaker and a patient.
The Forum
I emphasized the dynamic nature of the topic at hand and the renewed interest in comparative effectiveness research (CER), including work of PCORI. However, putting the patient at the center of research is only effective if that research can be disseminated effectively – empowering the voice of patients rather than simply publishing data. For the future of CER, successfully communicating research results to patients and clinicians will be as important as the findings themselves. This emphasis will help maintain the transformative trend of moving the patient towards the center of medical research, while also promoting the next level of patient involvement: patient-directed research.
Panel 1
The first panel discussed what they envisioned for PCORI when Congress was debating its creation and how closely the institute has followed congressional intent in the years since. Both Mr. Hayes and Ms. Egge emphasized the contemporary “bipartisan support” for an independent institute such as PCORI to complete patient-centered research and “inform clinical, patient, and payer decisionmaking.” Mr. Hayes added that from the beginning, PCORI was “not about cost-effectiveness,” an important distinction that is too often forgotten. As with so many things in Washington, the panel identified maintaining funding as the most contentious problem confronting PCORI, especially given its inclusion in the annual appropriations process.
In talking about PCORI’s history, it is impossible not to see the role of the patient evolve along with the institute’s work. The panelists and I agreed that one of PCORI’s greatest contributions has been to actively move the concerns of the patient into the research setting. Mr. Hayes rightly noted that defining what “patient-centeredness” truly means in a research setting was a very positive step forward, even if the system is still basing outcomes on some measures that are not indicative of a patient’s experience. Despite some outdated measurements, the overall progress towards a more patient-centered system is undeniable – more than ever before, researchers, physicians, patients, and policymakers are all paying attention to what happens outside the hospital when thinking about outcomes. It may not be completely understood or appreciated yet, but this marks the beginning of a new era in healthcare.
Panel 2
The second panel focused more on PCORI research priorities and the institute’s ability to disseminate findings to patients. Mr. Sperling was particularly complimentary towards the institute in this area, suggesting that PCORI goes much farther than any National Institutes of Health (NIH) bodies that complete other medical research. There is little doubt that the future of patient-centered medical research is tied hand-in-hand with dissemination, and it was good to hear from patient groups that PCORI’s efforts truly do make a difference. The work is far from over, with PCORI due to publish a number of studies online within the next year to continue their push towards broad communication of research findings, but again, this is an area where progress has been made and PCORI should feel proud of the strides it has made.
A question from the audience focused on PCORI’s role in promoting patient advocacy, with Ms. Slutsky answering that the institute does not provide resources for advocacy, but does offer support. Finding patients and encouraging them to speak up can often be a difficult and frustrating endeavor, but it is an absolutely vital one to ensure that patients are the advocates rather than the group being advocated for. It’s an important distinction that I’m happy to say has been recognized and addressed by PCORI. Programs such as PCORI’s Pipeline to Proposals initiative are a good way to encourage patients to participate in patient-centered research. As Mr. Sperling succinctly put it, the best way for patients to “participate in research is to engage with PCORI.”
Closing Thoughts
Culture change has never been easy – I saw that firsthand when I worked to pass the Americans with Disabilities Act 25 years ago. For patient-centeredness, no single actor will be able to unilaterally change the status quo, but PCORI has been an important ally in moving care in the right direction.
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