How Specialty Societies And Patient Advocacy Groups Can Advance Comparative Effectiveness Research

NCHC Writer
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Editor’s note. In addition to Norman Kahn and John Rother (photos and bios above), this post is coauthored by Timothy Lynch, JD, Director of Foundation Programs for the ABIM Foundation; David Hoyt, MD, Executive Director of the American College of Surgeons; and Steven Weinberger, MD, Executive Vice President and Chief Executive Officer of the American College of Physicians. The newly released December issue of Health Affairs includes a cluster of articles [2] on comparative effectiveness research and priorities for the Patient-Centered Outcomes Research Institute.

Specialty societies and patient advocates have critical roles to play to help accelerate the benefits of comparative effectiveness research (CER).  With the attention and respect they receive from their physician members, specialty societies are a trusted intermediary that can convey the views of practicing physicians to those sponsoring and conducting research, disseminate research findings widely and effectively, and foster conversations about the research and its importance between patients and physicians.  Patient advocates can explain the importance of CER to their constituents, helping to address fears that some may have that CER is a tool to deny needed care.  They can also disseminate specific findings to educate patients about the sorts of interventions they should (and should not) request.  Below we suggest ten specific steps that specialty societies and patient advocates can take to promote the use of CER.

A.        The Research

1.         Specialty societies and patient advocates should urge the Patient-Centered Outcomes Research Institute (PCORI) and other entities sponsoring CER to ensure patients and clinicians play active roles in designing CER studies and identifying the research questions to be studied.  CER can be too far removed from the concerns of clinical practitioners and patients to be of value.  Studies should be designed to inform the real-world decisions physicians and patients must make, and including clinicians and informed patients in the design process would help.  Societies could help train clinicians to participate effectively in the CER process, and advocates could train patients, who are often concerned about outcomes—such as those related to quality of life—that may not be apparent to researchers or clinicians.

2.         Specialty societies and patient advocates should help ensure that reports produced by the researchers undertaking CER studies are written to maximize their value for physicians and patients.  CER reports conducted under PCORI’s purview are expected to convey research findings in an accessible way.  Societies and patient advocates should review those reports and provide feedback to PCORI about their usefulness and suggested improvements.  Similarly, societies and advocates could seek out opportunities to review reports conducted outside of PCORI.

3.         Specialty societies and patient advocates should support complete transparency in CER.  Physicians and patients deserve to have confidence that the methods and conclusions of CER analyses are objective and unbiased.  Societies and patient advocates should call for information about research methods, investigators’ affiliations, and funding sources to be detailed explicitly and disseminated with the findings.

B.        Access/Dissemination

4.         Specialty societies should incorporate CER findings as quickly as possible into practice guidelines, patient guides, and other educational and communication tools.  To maximize the usefulness of CER studies for clinicians and patients, specialty societies should respond quickly to new research, disseminating findings through their journals, continuing medical education (CME) offerings, and educational programs that meet the standards of specialty certifying boards for inclusion in maintenance of certification.  Patient advocates should also disseminate evidence-based research findings through their communication channels.

5.         Specialty societies and patient advocates should advocate for decision support tools that incorporate guidelines reflecting CER findings Physicians can practice more efficiently and effectively when relevant research findings are embedded in decision aids or clinical practice guidelines that are transmitted directly to electronic records.  Societies and patient advocates should work with the Office of the National Coordinator for Health Information Technology (ONC) and the HIT vendor and policy communities to ensure that systems and templates for electronic health records can accommodate the incorporation of guidelines reflecting CER findings, and can capture and deliver the data and information that are needed.

C.        Physician-Patient Communication

6.         Specialty societies should educate their members about how to talk to their patients about evidence-based medicine, emphasizing the importance of fully disclosing risks and benefits discovered in the research, and describing all viable treatment options.  Physician communication should also elicit patients’ concerns, preferences, and values.  Patient advocates should educate their constituents about the importance and validity of CER, describing how it can help advance more personalized care.  Doctors are uniquely positioned to persuade patients, most of whom have little experience as consumers or users of research or statistical evidence, of the value and integrity of CER findings.  However, many physicians could benefit from advice about how to talk about CER findings and their relevance to patients.  Specialty societies are well-suited to provide that assistance, and they should work collaboratively with patient advocates to develop communications strategies to reinforce the benefits of CER in improving care and address concerns that CER will lead to the denial of needed care.

7.         Specialty societies and patient advocates should promote shared decision-making, including the use of decision aids that incorporate CER findings.  CER analyses can promote shared decision-making among patients and clinicians.  Societies and patient advocates can help promote the use of existing decision aids and  encourage the development of new ones.  Societies can also encourage physicians to welcome dialogue and empower their patients to become genuine partners in their care by encouraging discussion and questions about their care.

D.        Measurement

8.         Specialty societies and patient advocates should encourage measure developers to develop measures that are based on proven evidence.  As producers of guidelines that underlie measures, and as consumers of measures, specialty societies can enhance their quality both through basing guidelines on CER analyses and by urging the prompt development and updating of measures as the research base matures.  Patient advocates can promote patient experience measures and public reporting derived from measures reflecting evidence-based clinical guidelines.

9.         As specialty societies build and expand registries, they should link CER and other evidence bases in order to optimally answer clinical questions.  Specialty societies are increasingly employing registries to identify and close gaps in quality of care, reduce wasteful and inefficient care variations, and implement quality improvement measures.  These registries’ power to shape care will be enhanced if they collect the categories of data that would be most useful to CER researchers.  Specialty societies and patient advocates should seek to support these linkages through future specifications for physician quality reporting system (PQRS) registries, meaningful use criteria, and electronic health record (EHR) certification standards.

E.        Promoting CER

10.       Specialty societies and patient advocates should encourage their constituents to communicate the benefits of CER within the medical and patient communities and among the public.  The practice of medicine and the health of the American people will be improved if CER can deliver on its promise, and physicians and engaged patients can be CER’s most effective ambassadors.  Physicians and patient leaders can publicly embrace CER and explain how it can improve health care quality and advance personalized care.