Allowing patients to see their EHR data..?
Over the last two days I was involved in a meeting regarding health care data - data for and about physicians, and data for and about patients. A lot of that data overlaps of course, and our discussion revolved mainly around what kinds of information health care professionals need to see about themselves in order to facilitate lifelong learning and improvement. Other aspects of the discussion included how to assure the data is accurate, timely, secure, useable, and wanted; how to incorporate quality feedback with resources and tools for learning; and how to try to create culture change around the use and availability of high-quality health care data.
Today the discussion veered into the realm of patients: how to get them actively participating in decision-making, how to get them engaged in their own health and care, and what kinds of data should patients be able to see. For example, when a patient is choosing a provider or hospital, what kinds of data would help inform their decision? Should patients be able to see certain metrics or assessments regarding their physicians? Which ones should be public, and which private? I doubt patients and doctors will ever agree on these matters, but as the openness and availability of information grows every day, they aren't soon to go away.
Today I came across this article regarding a JAMIA review of why patients can't readily see their own EHR data. It touches on many of the topics we discussed this week, and it doesn't seem to get to any firmer ground than we were able to. The author points out that research suggests sharing a patient's health data with them, when integrated with education and clear communication, tends to improve efficiency, quality and patient satisfaction. However, there are also a number of obstacles and issues regarding sharing EHR data with patients. These include:
- data fragmentation
- privacy implications and legal concerns
- when should data be shared?
- which portions of the EHR should be shared?
- whether doctors should be able to screen certain things first (like lab results)
- whether patients can understand much of what they would read, and if doctors have the time or resources to translate it for them, and
- who actually controls or owns the EHR data?
This last point is very intriguing to me, as again, I think there is a great deal of disagreement about it. As a patient, I believe that my data is always mine and should be available to me whenever and however I want it (besides, as was mentioned today, the EHR may contain incorrect information that I would want the opportunity to check over and fix if possible). However, I know that many physicians and health care systems (let alone EHR vendors, insurers, etc.) may disagree with that. This debate is bound to go on for the foreseeable future, with many different sides weighing in. And despite the fact that I am a patient and not a doctor, I can see both sides of the issue.
It will be very interesting to see where this conversation goes, and how it ends up.
