Meaningful Patient Engagement

A prerequisite to any Meaningful Use discussion is the need to keep in mind that the current HIT effort, and appropriation of funds, originated from a legislative act whose primary goals were to reduce health care costs and create jobs in a faltering economy. The secondary goals of increasing quality of care and reducing disparities are assumed to be supportive of the primary goals.

One could easily argue that patient engagement in the health care process can have cost lowering effects on the entire system. Patients are by far the least costly resources in the continuum of care and the more tasks we can delegate down to these practically free resources, the lower the cost of care will become. Coupled with the widespread enthusiasm for patient participation as exhibited by numerous advocacy groups as well as representatives of the medical profession, engaging patients seems to be a win-win proposition.

However, after listening to testimony offered to ONC and after reading various statements and survey results, it seems that the number one concern of consumer advocates is to make medical records available to patients and delegate control over aggregation and dispersal of medical information to the patient. With control comes responsibility, and with responsibility comes accountability.

If we assign responsibility for the maintenance of complete records to patients, we are de facto releasing physicians, mostly primary care physicians, from accountability for care coordination and continuity of care efforts. This may very well lower the operation costs for the practice, but disparities in people’s ability, and willingness, to manage medical records will translate into amplification of existing disparities in quality of care. I am not sure how the overall cost of care will be affected.

On the other hand, if the responsibility for aggregating and maintaining longitudinal medical records is formally placed with the primary care physician, as it mostly is today, we would be taking a big step towards the creation of medical homes with empowered primary care and with distinct incentives for primary care first contact. There is an abundance of studies showing the cost effectiveness of strong primary care stewardship.

To me patient engagement is more about collaboration, education and participation in informed decision making. I believe there are strong indicators that, when informed and consulted, patients tend to choose less costly treatments and are more likely to actively and effectively manage their condition. Technology will evolve, is evolving, to push health care out to less expensive venues. The generation now entering the Medicare stage of life will demand independence from traditional care settings. This too should contribute to better quality of care, reductions in disparities and ultimately lower cost of care.

There is no doubt in my mind that every person should have a right to see, copy, download, dispute, share and even publish their medical records. Medical records, regardless of where they were created or stored, are, or should be, the patient’s exclusive property and should be treated as such, whether identified or deidentified, which is really a separate issue and has very little to do with patient engagement and much more to do with the anticipated financial exploitation of “data liquidity” by certain sectors of the industry.

In summary, while it is imperative that we move forward with computerization of medical records, and full unfettered access to medical records for their rightful owners, we must also be aware of the unintended consequences of our actions and be mindful of the primary goal placed before us by the taxpayers who are footing the multi billion dollar bill associated with HITECH.