Summit

A major focus of the Summit discussion concerned the changing nature of health data and its effects on the way HSR is conducted. The central idea was that, while data have in the past been almost exclusively generated by researchers themselves through audits, surveys, and other collection methods, they are now increasingly produced in spheres that are beyond the control of researchers. Some of these data are generated as a by-product of care delivery and reside in (and are controlled by) health care organizations and health plans. They are produced through increasingly sophisticated technologies, and they also include new sources such as social networking sites that operate in cyberspace and are oriented toward patients’ and doctors’ use, rather than researchers’. Websites like patientlikeme.com and 23andme.com, and physician sites, such as sermo.com present a new world of opportunity, as well as myriad methodological and governance challenges that the field is only just beginning to contemplate. Most academic researchers have limited experience with data produced through these more novel means.

How researchers will interact with these “naturally occurring data” and engage, or not, with those who control them will have enormous impact on the ways in which the field of HSR develops. Indeed, Summit discussions indicate that some of these changes may be uncomfortable for the field. As Karen Davis remarked in her summary of the discussion, “health services research will need to give up some control.” Paul Wallace, of Kaiser Permanente, went so far as to suggest that the changes will bring about a paradigmatic shift in the field–a shift he likens to the transition from an era of food scarcity, with a hunter-gatherer mentality, to an era of abundance associated with agricultural techniques.

Given that these data have not been validated or tested in a research context, a first question is how useful are they for research purposes? Luft suggests that for those data relating to provider performance, incentives can be created to continually improve data quality. For data generated outside health services, such as patient-driven websites, Summit participants urged the field to engage with these initiatives to explore potential partnerships that would help improve data quality and provide guidance on its appropriate use on research.