Initial National Priorities for Comparative Effectiveness Research (2009) / Chapter Skim
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3 Obtaining Input to Identify National Priorities for Comparative Effectiveness Research
3 Obtaining Input to Identify National Priorities for Comparative Effectiveness Research
Pages 61-76
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From page 61... ...
111-5) to consider input from stakeholders, the committee focused on three mechanisms for obtaining input on comparative effectiveness research (CER)
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���������������������������������������������������������������� Oral and written presentations at an open stakeholders' meeting scheduled at the National Academy of Sciences Building in Wash ington, DC 3. ������������������������������������������������������������������ Submission of specific CER topics, as well as general comments on the process of conducting CER via a web-based questionnaire The committee's goal was to receive the most extensive advice and recommendations possible for national CER priorities from the widest possible array of stakeholders within the time and resources available.
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OBTAINING INPUT TO IDENTIFY NATIONAL PRIORITIES 63 TABLE 3-1 Solicited Stakeholder Groups (including, but not limited to the examples shown) Categories Stakeholder Groups Consumers/Patient • AARP Advocacy Groups • Center for Advancement of Health • Consumers Union • National Health Council • National Minority Quality Forum Federal Government • Agency for Healthcare Research and Quality Agencies • Centers for Disease Control and Prevention • Centers for Medicare & Medicaid Services • Department of Veterans Affairs • Food and Drug Administration • National Institutes of Health Health Care Providers and • American Academy of Family Physicians Researchers • American Academy of Pediatrics • American College of Physicians • American Medical Association • American Nurses Association • American Psychological Association • National Medical Association Insurers • America's Health Insurance Plans • Blue Cross and Blue Shield Association • CIGNA Integrated Health Systems • Geisinger • HealthPartners • Kaiser Permanente Manufacturers • Advanced Medical Technology Association (including drugs, devices, and • Biotechnology Industry Organization biotechnology)
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From page 64... ...
These suggestions included provid ing feedback to physicians, improving decision support for clini cians, encouraging physicians to use best practices and clinical guidelines, conducting research on medical and surgical devices, enhancing patient adherence to regimens, developing user-friendly guides, testing alternative patient decision-making tools, and al lowing public comment periods for comparative effectiveness study reports. Long-term issues that were addressed included revisiting re search results when new information becomes available, expanding training programs for CER, and partnerships among professions.
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From page 65... ...
The representative from the Association of American Medical Colleges urged the committee to recommend investments in training researchers, in data resources, and in other CER infrastructure. Some presenters, such as the representatives from the National Medical Association and the National Minority Quality Forum, expressed concern that CER might be used to generalize approaches to therapy, in a so-called one-size-fits-all approach to health care.
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66 INITIAL NATIONAL PRIORITIES FOR CER BOX 3-1 Organizations Represented at the Stakeholder Meeting • A Certified Nurse Midwife • Consumers Union • Advanced Medical Technology • Developing Families Center Association • Duke University Medical Center • American Academy of Family • eHealth Initiative Physicians • Focus on Therapeutic • American Academy of Outcomes, Inc. Pediatrics • Friends of Cancer Research • American Association for • Frontier School of Midwifery & Dental Research Family Nursing • American Association of • Health Care Consultancy Neurological Surgeons • HealthPartners Research • American College of Cardiology Foundation • American College of Clinical • International Society for Pharmacy Pharmacoeconomics & • American College of Occupation Outcomes Research and Environmental Medicine • The Lewin Group • American College of Surgeons • National Alliance for Hispanic • American Heart Association Health • American Medical Association • National Alliance on Mental • American Nurses Association Illness • American Psychiatric • National Health Council Association • National Medical Association • American Psychological • National Minority Quality Forum Association • National Pharmaceutical • American Society of Clinical Council Oncology • Network for Regional • America's Health Insurance Healthcare Improvement Plans • Oregon Health and Science • Association of American University and Portland VA Medical Colleges Medical Center • Association of Clinical • Parkinson Pipeline Project Research Organizations • Personalized Medicine • Association of Schools of Coalition Public Health • Pharmaceutical Research and • Biotechnology Industry Manufacturers of America Organization • Society for Cardiovascular • Blue Cross and Blue Shield Angiography and Interventions Association • The Society of Thoracic • California Department of Public Surgeons Health • United BioSource Corporation • Center for Advancement of • United States Pharmacopeia Health • University of Iowa • Center for Science in the Public • Washington State Health Care Interest Authority • CIGNA
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From page 67... ...
Key topics for investigation identified by the speakers included diabetes, coronary heart disease, chronic obstructive pulmonary disease, depression, common spinal disorders, childhood asthma, obesity, early brain development, family services and midwifery, oral health, minimally invasive surgery, chronic disease in general, and complementary and alternative medicine, among others. Specific modalities of health care delivery that were proposed included behavioral health, medical homes, multi-professional teams, and expanded roles for non-physician health professionals.
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Some professional groups reported joining together to help develop CER standards, registries, and procedures. Some organizations, such as the Advanced Medical Technology Association and Blue Cross and Blue Shield Association, indicated that they might be willing to support projects materially.
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Table 3-2 displays the distribution of respondents by self-identified stakeholder category. While approximately 75 per Figure 3-1 cent of respondents identified themselves as either providers or researchers R01311 vector, editable (which includes the following categories: Health Care Provider, Researcher, Government -- Research, Government -- Programs, and Health Plan/Insurance Carrier)
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Respondents were further asked to support each nominated topic with specific information, including data to justify the importance of the proposed research, assignment of the topic to a single primary research area, identification of appropriate study populations, specification of interventions being compared, and the proposed study methodology. In an effort to be as broad and inclusive as possible, the committee identified the primary research areas from the 17th edition of Harrison's Principles of Internal Medicine (Fauci et al., 2008)
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47 Oncology and Hematology 57 Oral Health 15 Other 3 Palliative and End-of-Life Care 20 Pancreatic Disorders 2 Pediatrics 89 Psychiatric Disorders 127 Racial and Ethnic Disparities 19 Regenerative Medicine 2 Respiratory Disease 29 Sexual Function and Reproductive Disorders 4 Skin Disorders 19 Trauma, Emergency Medicine, and Critical Care Medicine 79 Women's Health 37 Total 1,268 NOTE: Secondary and comorbid conditions were also provided but not included in this table.
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Total 2,573 NOTE: The total exceeds the total number of nominations because respondents were allowed to select multiple populations. TABLE 3-5 Comparative Effectiveness Research Priorities by Proposed Intervention Comparators Count Alternative Treatment 171 Behavioral Treatment 421 Devices 114 Pharmacological Treatment 306 Prevention 452 Procedures (including surgery)
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Public Responses on Their Priority-Setting Process In addition to making specific recommendations for comparative effectiveness priorities and providing supporting information, many of the questionnaire respondents provided information on how they developed their topic nominations, what were their principal priority-setting criteria, and what new or enhanced infrastructure would be needed to sustain a CER enterprise. Regarding the development of CER topics, the largest number of respondents indicated that they nominated topics based on professional experience, both clinical and classroom, and often of many years' duration.
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From page 74... ...
Other comments justifying priority nominations included closing information gaps, countering misinformation, addressing specific areas of research deemed underfunded, assessing new service delivery models, improving public interest, minimizing controversy, reducing disproportionate impact on subpopulations, focusing on research that could deliver quick results, that is low cost, and that is feasible to implement, focusing on psychosocial and educational factors, including family dysfunction that affects health outcomes, and developing new research methods. In addition, 650 respondents answered the question about enhancing CER infrastructure.
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From page 75... ...
Specific proposals were made for openness, including a national conference, a national committee, local research efforts, and scientific input. Identified needs included registries, longitudinal studies, data availability and access provisions, development of clinical guidelines, examination of subpopulations, reduction in disparities, ways of widely disseminating results, and public and professional education and communication of findings.
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