Patient engagement in health care is improving. At least there is increasing rhetoric about the importance of engaging the patient in the process of their health care. This belated recognition is still mostly paternalistic, an attitude exemplified by unequal access to relevant information.
Patients still see themselves as "customers" at best, and as supplicants most of the time. In any variety of health insurance however, patients are in fact the "owners" of the sector. It is their fees collected at time of service or through taxes or insurance premiums that pays for the health care sector and all its facets.
In normal competitive markets customers are sovereign; they decide whether and when to purchase goods and services. Those conditions do not apply in health care. People do not decide when to become ill and they generally lack adequate information to choose among options for providers and intervention processes. Furthermore, people have little motivation to initiate and sustain agitation for system improvements even regarding their own care. When healthy these concerns seem remote; when ill all energy is focused on navigating the uncoordinated health care intervention systems.
Then there is the perception of unequal power between patients and providers leading to possible vituperation in response to negative feedback from patients. Patients and their families regularly report fear that any indication of dissatisfaction might limit their access to care now or in the future. No one wants an angry nurse or an even more distant doctor. That attitude and those possibilities shut off an important feedback source for system reform.
Can this negative cycle be broken? Making wide-ranging, accurate and relevant systems information routinely available to the public is central to improved patient engagement.
An analogy can be found in the recent revolution in the North American real-estate business brought about by direct public access to the Multiple Listings Service. Once the cartel-control of relevant information was broken, the public became directly engaged in the buying and selling of property to a degree that is reshaping the role of real-estate salespeople and the structure of the real-estate business.
The same can happen in health care if the public had routine access to detailed cost, outcomes and quality information on all aspects of the health care sector include all tests, interventions and providers. That should be the business of a integrated public access e-health information system. It would even make money. Disruption anyone?