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Expanding Comparative Effectiveness and Patient Centered Outcomes Research in the United States:
Opportunities in Oncology
Friends of Cancer Research (Friends) with the generous support of Oracle Health Sciences, Avalere, and the National Pharmaceutical Council held a forum entitled "Expanding Comparative Effectiveness and Patient Centered Outcomes Research in the United States: Opportunities in Oncology" at the Capitol Hill Hyatt in Washington, D.C. on June 8. 2011. The event brought together key members of government, industry, and advocacy to discuss current efforts and future projects relating to comparative effectiveness research (CER). Ellen Sigal, Chair of Friends and Brett Davis, Oracle, made brief introductory statements emphasizing the role of the patient in CER, which was a common theme throughout the panel discussions.
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(L-R) Ramsey Baghdadi, Dr. Clancy, Dr. Collins, Dr. Woodcock
Discussion with Federal Leaders on the Future of CER
Panel 1 consisted of a discussion with Dr. Francis Collins (Director, NIH), Dr. Janet Woodcock (Director, CDER, FDA) and Dr. Carolyn Clancy (Director, AHRQ) moderated by Ramsey Baghdadi of The RPM Report. The panelists began by talking about CER and its expanding role at their agencies. Dr. Collins and Dr. Clancy talked about how CER has been present in their agencies for many years, but the passing of the Patient Protection and Affordable Care Act formalized a relationship between AHRQ and the NIH that could allow CER to have a much greater impact. Looking to the patient perspective, Dr. Woodcock described how CER cannot be too broad and must have a sophisticated approach to answer the questions every patient has: "is this going to work for me?" All panelists agreed there is going to need to be significant coordination and cooperation between all stakeholders to see successful CER results.
The panelists also talked about the "Comparison of Age-related macular degeneration Treatment Trial" (CATT). Providing each agency's reaction, the panelists showed encouragement for the findings and critiques, with Collins praising the study with Clancy feeling that an observational arm would have aided the study further.
Additionally, panelists discussed the Patient Centered Outcomes Research Institute (PCORI) and its role in disseminating CER information to the public. Panelists agreed greater communication directly from the agencies through medical journal, social media, and other communication mediums will be beneficial to helping the public understand the nuance of research data and help better inform patients.
Audience members asked questions throughout the panel, including how FDA data can be used to aid CER and how to get more patient involvement in CER.
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(L-R) Ramsey Baghdadi, Jeff Allen, Amy Abernethy, Sandra Wong, Al Benson, Cindy Geoghegan
Round-table Discussion with Oncology Leaders
Building off Panel 1, a main focus of Panel 2 was how to disseminate information to patients and doctors and the integration of research into the clinical setting. Patients often feel as though they are labeled under one heading, and it can be difficult for doctors to convince patients they are not a patient in a clinical trial and that what works for some may not work for them. Patient advocates on the panel discussed the need to engage patients and work with them "on their level" so they can fully understand information that is being disseminated.
Providers, on the other hand, are facing additional challenges with influxes of data and the need to integrate that information to the clinical environment. Dr. Amy Abernethy, Director of the Duke Cancer Care Research Program, noted that studies that are released are new information for doctors as well and they are not always aware of the best way to communicate those results to the patient during a visit. "It can be difficult when a patient has certain expectations and you don't have an answer for that particular patient," agreed Dr. Sandra Wong.
The panel then conducted an overview of some of the projects and goals submitted prior to the forum and distributed to all in attendance. These include going after some projects that have yet to be addressed on a large scale, such as complex illnesses and the care of those with special needs; international clinical trial data collection; and developing guidelines for high quality care. All panelists agreed there needs to be more research about how patients and clinicians make medical decisions and equal stakeholder investment.
Dr. Jeff Allen concluded the forum by highlighting the need for continued communication between government agencies, the medical community, industry, and advocacy organizations to maximize the benefit of CER.
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