title: A framework for understanding cancer comparative effectiveness research data needs.
abstract: OBJECTIVE
  Randomized controlled trials remain the gold standard for evaluating cancer intervention efficacy. Randomized trials are not always feasible, practical, or timely and often don't adequately reflect patient heterogeneity and real-world clinical practice. Comparative effectiveness research can leverage secondary data to help fill knowledge gaps randomized trials leave unaddressed; however, comparative effectiveness research also faces shortcomings. The goal of this project was to develop a new model and inform an evolving framework articulating cancer comparative effectiveness research data needs.
  
  
  METHODS
  We examined prevalent models and conducted semi-structured discussions with 76 clinicians and comparative effectiveness research researchers affiliated with the Agency for Healthcare Research and Quality's cancer comparative effectiveness research programs.
  
  
  RESULTS
  A new model was iteratively developed and presents cancer comparative effectiveness research and important measures in a patient-centered, longitudinal chronic care model better reflecting contemporary cancer care in the context of the cancer care continuum, rather than a single-episode, acute-care perspective.
  
  
  CONCLUSIONS
  Immediately relevant for federally funded comparative effectiveness research programs, the model informs an evolving framework articulating cancer comparative effectiveness research data needs, including evolutionary enhancements to registries and epidemiologic research data systems. We discuss elements of contemporary clinical practice, methodology improvements, and related needs affecting comparative effectiveness research's ability to yield findings clinicians, policy makers, and stakeholders can confidently act on.
authors.affiliation: Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina, Chapel Hill, NC 27599, USA. wrc4@email.unc.edu
authors.forename: William R
authors.initials: WR
authors.lastname: Carpenter
authors.forename: Anne-Marie
authors.initials: AM
authors.lastname: Meyer
authors.forename: Amy P
authors.initials: AP
authors.lastname: Abernethy
authors.forename: Til
authors.initials: T
authors.lastname: Stürmer
authors.forename: Michael R
authors.initials: MR
authors.lastname: Kosorok
mesh_terms: D002908:Chronic Disease; D057186:Comparative Effectiveness Research / Q000379:methods*; D003625:Data Collection / Q000379:methods*; D003627:Data Interpretation, Statistical; D006801:Humans; D008962:Models, Theoretical; D020380:Needs Assessment; D009369:Neoplasms / Q000628:therapy*; D010043:Outcome and Process Assessment, Health Care; D018802:Patient-Centered Care; D016032:Randomized Controlled Trials as Topic; D012042:Registries; D014481:United States; D016270:United States Agency for Healthcare Research and Quality