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Models for Success: Avalere Identifies Best Practices to Include Patients and Physicians in Medical Comparative Effectiveness Research

Contact: Lindsey Spindle, 202.207.1337, lspindle@avalerehealth.net

03.06.08

Washington, DC – A new report by Avalere Health identifies successful ways to integrate patient and clinician perspectives into the development of research agendas.  The study – released today at a National Working Group on Evidence-Based Health Care event – comes just as Congress considers legislation to significantly expand federal investment in comparative effectiveness research (CER). 

Despite significant public and private resources devoted to clinical research, much of this research does not yield information that patients find most helpful in their decision-making.  For example, while researchers typically focus on clinical endpoints, patients tend to care more about understanding a drug’s effect on their quality of life, its side effects, or costs. 

Avalere’s study examines how eight diverse organizations, such as the Food and Drug Administration, the Juvenile Diabetes Research Foundation, and the United Kingdom’s National Institute for Health and Clinical Excellence (NICE), have sought to integrate patients and clinicians into their research agenda development.  The study then catalogues those efforts into a first-ever set of “best practice” recommendations for health research organizations eager to initiate greater patient participation. 

Organizations included in the study expressed hope that their efforts would help shift the paradigm for patients and clinicians from having a limited to a more tangible role in research agenda setting, thus creating a new model for patient and clinician inclusion and influence, and relevant information for those audiences.   

“Increased federal commitment to comparative effectiveness research will only improve healthcare decision-making if the needs of patients and clinicians are anticipated,” said Tanisha Carino, a vice president at Avalere Health and co-author of the report.

The new research advances these best practices for encouraging strong patient and clinical participation in research agenda setting:

• Appoint a champion.  Research organizations need an organizational champion to implement a system for patient and clinical input.  Without that leadership and vision, these efforts tend to falter. 
• Show it the money.  Research organizations must back their commitment to patient and clinician inclusion with dedicated dollars for staffing, volunteer training, and volunteer recruitment.  Without sustained and predictable financial support, it is difficult to build a reliable model for patient inclusion. 
• Build a coalition of the willing.  Patients and clinicians must be motivated participants who understand their role and are willing to dedicate time to understanding the intricacies of the research process. 
• Commit to training.  Most patients and clinicians will need education to fulfill their role as an active participant.  This involves teaching about the research process, providing reference materials in lay language, and instructing on a common language for everyone involved. 
• Measure program success.  While placing a value on patient and clinician involvement can be difficult, research organizations should make efforts to evaluate and measure their efforts.  These measurements can be a mix of qualitative and quantitative measures.

"Patients play an essential role in setting research priorities,” said Hazel Moran, convener of the National Working Group on Evidence-Based Health Care. “It is the input from an individual who lives with a particular health condition day in and day out that is invaluable and can inform researchers of what is truly a meaningful health outcome."  The Working Group is a collaboration of patient/consumer organizations, professional societies, providers, and researchers, who seek to educate and engage patient/consumer groups to advance the dialogue about meaningful participation in evidence-based health care.

The report, “Patient and Clinician Participation in Research Agenda Setting:  Lessons for Future Application,” was prepared by Avalere Health. Novartis Pharmaceuticals Corporation provided funding for this research. Avalere maintained editorial control and the conclusions expressed in the report are those of the authors.

Avalere Health is an advisory services company whose core purpose is to create innovative solutions to complex healthcare problems. Based in Washington DC, the firm delivers research, analysis, insight, and strategy for leaders in healthcare business and policy. Avalere's experts span 125 staff drawn from the federal government (e.g., CMS, OMB, CBO, and the Congress), Fortune 500 healthcare companies, top consultancies, and nonprofits. The firm offers deep substance in areas ranging from healthcare coverage and financing to the changing role of evidence in healthcare decision-making. Its focus on strategy is supported by a rigorous, in-house analytic research group that uses public and private data to generate quantitative insight. Through events, publications, and interactive programs, Avalere also translates real-time healthcare developments into actionable information.

Learn more at www.avalerehealth.net.

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