Consumers’ View of Electronic Health Records

The Agency for Health Care Research and Quality has released a summary of a series of focus groups it conducted to evaluate consumers’ views of health information technology.  The results are enlightening.  (AHRQ Report) The agency arranged for a series of focus groups across the country, conducted by a standard methodology and discussing the same topics.  The participants were all individuals who had a recent experience with the health system and many were frequent users.  They appear to represent a good cross-section of the general population.

The results indicate that while people are hopeful that health information technology will improve quality, they are not interested in being very involved in design of health information systems or how they will be used.  There were significant privacy concerns and a desire to control use of information in ways that might compromise the value of easily shared medical records.   Participants believed vendors would do what their customers wanted, not what patients were interested in.  They did not believe that organizations like AARP or disease advocacy groups represented the participants’ interests.  They were concerned that more IT might mean that their interactions with providers became more impersonal and the participants did not want that.

The overall picture is of relative passivity in regard to what the “experts” design in the way of a health information system, coupled with frustration over privacy and a desire to have more personal interaction with providers.  These results contrast sharply with the glowing visions of all patients deeply engaged in managing their health care through use of advanced technologies, but it likely presents a more complete picture of consumers’ attitudes.  While there clearly are subsets of patients who will be easily engaged to use information and other technologies in regard to their health and health care, there are many others who will need significant education and encouragement to take advantage of those technologies.