paywalled: Data for cancer comparative effectiveness research - Meyer - 2012 - Cancer - Wiley Online Library

Data for cancer comparative effectiveness research

Abstract

Comparative effectiveness research (CER) can efficiently and rapidly generate new scientific evidence and address knowledge gaps, reduce clinical uncertainty, and guide health care choices. Much of the potential in CER is driven by the application of novel methods to analyze existing data. Despite its potential, several challenges must be identified and overcome so that CER may be improved, accelerated, and expeditiously implemented into the broad spectrum of cancer care and clinical practice. To identify and characterize the challenges to cancer CER, the authors reviewed the literature and conducted semistructured interviews with 41 cancer CER researchers at the Agency for Healthcare Research and Quality's Developing Evidence to Inform Decisions about Effectiveness (DEcIDE) Cancer CER Consortium. Several data sets for cancer CER were identified and differentiated into an ontology of 8 categories and were characterized in terms of strengths, weaknesses, and utility. Several themes emerged during the development of this ontology and discussions with CER researchers. Dominant among them was accelerating cancer CER and promoting the acceptance of findings, which will necessitate transcending disciplinary silos to incorporate diverse perspectives and expertise. Multidisciplinary collaboration is required, including those with expertise in nonexperimental data, statistics, outcomes research, clinical trials, epidemiology, generalist and specialty medicine, survivorship, informatics, data, and methods, among others.

Recommendations highlight the systematic, collaborative identification of critical measures; application of more rigorous study design and sampling methods; policy-level resolution of issues in data ownership, governance, access, and cost; and development and application of consistent standards for data security, privacy, and confidentiality.

Outcomes Research Institute Releases Priorities - in Public Health & Policy, General Professional Issues from MedPage Today - comments until March 15

WASHINGTON -- The new institute created by the Affordable Care Act (ACA) to study which medical treatments are the most effective will focus on broad areas of healthcare instead of specific drugs or procedures, according to a draft of its research priorities.
The institute, called the Patient Centered Outcomes Research Institute (PCORI), is a nonprofit organization with a 21-member board that will identify areas that can benefit from comparative effectiveness research, fund the research through $3 billion in grants over the next decade, and provide patients and clinicians with research findings.
Opponents of the healthcare reform law charge that PCORI will make decisions that will lead to clinical rationing.
Supporters of the ACA, however, say comparative effectiveness research is crucial to improving the U.S. healthcare system and that it won't lead to denying access to certain drugs or procedures. The law specifically prohibits the panel's recommendations from being "construed as mandates for practice guidelines, coverage recommendations, payment, or policy recommendations."........
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In draft recommendations released Monday, the PCORI board identified five broad areas where it determined comparative effectiveness research is needed. They are:

• Assessment of options for prevention, diagnosis, and treatment, with research focusing on patient preferences and decision-making as well as various factors that may affect patient outcomes.
• Improving healthcare systems, including focusing on coordination of care for patients with multiple medical conditions, and how use of nonphysician providers affects patient outcomes.
• Communication and dissemination of research, including ways to provide information to patients that helps them to talk with their healthcare providers about it, and ways to use electronic data (e-records) to support decision-making.
• Addressing disparities, including ensuring that research into the benefits and risks of various medical options addresses the needs of all patient populations.
• Designing "quick, safe, and efficient" patient-centered outcomes research and methodological research, and studying ways to improve the quality and usefulness of clinical data and follow-up studies.

"These priorities and agenda give a framework to and identify the broad questions that must be addressed so that patients can make better and more personalized decisions in partnership with their clinicians across all areas of health," said PCORI Executive Director Joe Selby, MD, MPH, in a press release.
Selby added that the early agenda is a starting point and PCORI hopes that patients, healthcare providers, and others will provide feedback and "think boldly" about research projects in all five areas.
The draft will be available for public comment until March 15, and PCORI will hold a public meeting in Washington on Feb. 27.

Making comparative effectiveness work in cancer care - Cancer Network

Note: discusses cost eg. BRCA's - surgery vs surveillance

Identifying and Eliminating the Roadblocks to Comparative-Effectiveness Research | Health Care Reform Center

full access: PLoS Medicine: Comparative Effectiveness Research: Challenges for Medical Journals

"We recognize that CER has the potential to substantially improve decision-making about existing and new approaches to health care. To fulfill this potential, researchers must adopt stringent methods, and medical journals must hold them to high standards of ethics, scientific rigor, and reporting."