Data About Patients Should Be Patients’ Data

I think that almost everyone would agree that making good choices requires access to good information. That may be especially true with regard to choices about one’s health, where the stakes are high, the issues are often complicated, and there is a lot of uncertainty. That is why I feel so strongly that promoting patient access to clinical data is the right thing to do, that it drives better care, and that patients will increasingly demand it.

Here is another, more personal, reason why I feel strongly about it.

Best wishes for a happy and healthy New Year.

4 thoughts on “Data About Patients Should Be Patients’ Data

  1. I agree with you, Dr. Nash! I used to argue about this all the time with colleagues when I worked in Information Systems also, because they believed the data belonged to the institution. Thankfully many of the EMR vendors get it with Patient Portals becoming more prevalent; especially since communication between specialists is not always done well.

  2. Ira, thank you for this thoughtful and articulate essay. Surely, the issue of patient access to loop recorder data represents a microcosm of the larger problem. The OpenNotes movement that you have so strongly supported represents a step in the right direction. I am afraid we have a ways to go on the in-patient side, however, as hospital rules and historical practice make for significant speed bumps when patients or family members request direct access to the chart. I am also reminded of the perspective that every health professional gains when we find ourselves on the other side of Alice’s looking glass, as a patient or loved one of a patient navigating our system of healthcare delivery. Happy and Healthy New Year!

    1. I agree! This is a much broader issue than loop recorders. I believe the guiding principle should be: “data about patients should be patients’ data” and policies and practice should follow.

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