Engaged Healthcare Consumers?
On November 27, the Carin Alliance, a multi-stakeholder group promoting consumer-directed exchange of health data, released a Code of Conduct endorsed by over 60 healthcare organizations including the Blue Cross Blue Shield Association. While often merely symbolic–applauded by fellow members of an echo-chamber–I believe that the Carin Code is an important step towards creating a voluntary policy framework for personal health information exchanges involving non-HIPAA covered organizations.
The document adheres closely to the FTC Fair Information Practices and other current privacy policies. The Code of Conduct, while not legally binding, provides a pathway to a widely recognized set of principles that can be adopted by the signees as well as other organizations that are or will be engaged in consumer-directed health data exchanges. Significant advances in developing use cases that leverage the FHIR standard as well as the innovative work with open APIs that CMS has begun with Blue Button 2.0 are also moving the industry forward.
Providing better consumer access to and easier use of their data is important, but the bigger challenge is getting the interest and active participation of the consumer themselves in their various roles of patient, member, care provider etc. HHS’ Office of the National Coordinator (ONC) provided a brief earlier this year that looked at patient access to and use of their health information. The results show that many people do not consider accessing their records on-line to be important and few do little with patient portals other than a passive review of their office visits or lab results.
The ONC survey is more positive than my own personal universe. Family and other acquaintances, who aren’t part of the great personal data “movement” don’t really care about porting their health data to an app and are sporadic users of health portals. Many do track data on their wearables but do very little with information. They care about their office visit results, lab tests, and medications. They are also concerned about rising medical costs, including the fact that they mostly don’t understand how they are derived. Providing the consumer with easier access to their health data without educating them on how to interpret the data or simplifying the information doesn’t solve those problems.
People I know usually care about their health, but more complain about the hassles they deal with every time they engage the health care system, not lack of access to their data. Most of their issues are people problems, not data issues: Tone-deaf providers, non-caring administrative staff, long waits in the office etc.
I do applaud the work that Carin Alliance and others are doing to push to make it easier for patients and others to actively engage with the healthcare system. Their Code of Contact provides an excellent industry framework to promote more consumer-centric interoperability. However, as the healthcare industry strives to get greater consumer engagement, we need to ensure that we are truly prioritizing real consumer healthcare concerns, not just creating more apps. Otherwise, we risk alienating the patient and producing new challenges, as the industry did to providers with the implementation of electronic health record systems.