Friday, June 17, 2011

Empowering patients with data

I've been thinking more and more about the idea of engaging patients in their own care as the means to improve quality and reduce costs. Today I see that Farzad Mostashari, Director of the Office of the National Coordinator, is thinking along the same lines:
"The meta principle is putting patients at the center of information flows, literally. Achieving that means freeing the patient data, empowering patients by raising awareness that they can access their own data and teaching them to learn from it."
Perhaps the time has come....


  1. As a fairly informed patient, when I have my annual physical, I want all of my numbers, not just the numbers that fail to meet a standard, but I only get a letter with my "bad news." For example, I follow a "Paleo" style diet, and I fully expect that my LDL will be "out of range" when I have my physical in a few weeks. But, my HDL and triglycerides and glucose numbers will be fine. My TRIG:HDL ratio will be well below the recommended value of 2, and probably under 1.0. This is a good indicator of Pattern A LDL, which means that I don't care as much about a high LDL reading. But, my provider will probably report two things to me: LDL and total cholesterol because they are high. With an HDL likely in the range of 100, I care very little about my total number. I'll have a hard time getting the other numbers, unless I pay out of pocket for an advanced lipid profile, like the VAP from Atherotech. In the absence of the other numbers, my LDL numbers lack context (to me), and I won't have the information I want to decide how to proceed in my care.

    So, is having a patient with lots of data a good or bad thing? What if my opinions on the meaningfulness of a certain number contrast with the provider? Who is right? Who determines the course of treatment, if one person thinks treatment is require and the other doesn't? So far, I've found providers to be very resistant to accepting interpretations of data outside of the medical mainstream. Do doctors want to arm patients with data that allows them to truly participate? What if the participation is truly something that the provider cannot agree with?

  2. Allowing patients to be at the center of their own data scares the living daylights out of some doctors. If the patient is more in control, then who loses control? It's a classic economic theorem. And it is a zero sum system. This is why EHR adoption has taken so long.

  3. I think both Damon and Marc Onigman are right on the money. Sharing information with patients is a new paradigm, maybe even revolutionary. It does upset some physicians because it does expand the conversation about what is the right way to care for the patient's medical concerns. That means more of the hard work of conversing, explaining, listening and negotiating.

    In the short run, if you can't come to terms with your doctor about what the lab test numbers mean, you had best get a new doctor! In the long run, we need to do more than just flood the patient with a whole lot of data. We need systems to put it in context and make it useful to the patient - and we need tools to help doctors communicate with patients effectively and efficiently.

  4. Hi guys,.
    The meta principle is putting patients at the center of information flows, literally.

  5. Uruguay is right that the patient needs to be in the middle. However, they need to have context, not just content. "What do the data mean?" "What should I do?" "How can I find out more?" That's why Marc Onigman mentioned the fear that the doctors have: right now the only reasonable resource is the provider, and they aren't getting paid to do this work.

  6. I have three points to say:
    One point is to give the patient context.
    Second point is to make sure that the patient has immediate access to all his records at any point of care anytime so that any doctor would have a fairly good picture of what the patient has.
    Last point is for the patient to be the one in control of the privacy and confidentiality of his information while maximizing shareability.

    I would go for patient's rights to know everything about his/her illness rather than appeasing resistant doctors.

  7. Thanks, Ian. I agree with all your points. The second point (about the patient having full access) is still quite a technical problem, especially for patients who don't get all their care from one provider. But solutions are starting to appear.


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