Who owns your data? Why?

I’ve received an interesting request: Women Executives in Healthcare, a Hartford professional organization, will hold a meeting this fall themed around “Who owns your data?” And they asked, what are patients’ top five issues?

Of course I have plenty of opinions, but as with all things participatory, it’s better if we don’t assume all patients want the same thing or think the same. So, what do you think? Here’s some soup starter; have at it:

  • Data quality is essential to any IT – especially health IT.
    • The purpose of recording any information (on paper or computer) is so someone can read it back later and do something based on what it says. When the recorded info is wrong, that’s a big problem! Two quick examples:
      • My mom’s hyperthyroid was transcribed into a new system as hypothyroid; the mistake could have killed her. But my sisters were on top of it and prevented harm.
      • Years earlier, when my wife first gave birth, her chart was missing her penicillin allergy; she herself caught it when they tried to shoot her up.
    • Every single patient I’ve spoken with who’s looked through their medical records has found mistakes.
    • Meanwhile, no hospital I know of says clinicians have time to hunt through and fix things.
    • My two cents: let patients help!
    • See also last month’s excellent NeHC webcast on this, below.
  • Current reality: consumers often report stubbornness when they ask to see the data: too many hospitals think it’s their property. (We’ve blogged such anecdotes here several times.)
    • When a relative of mine was hospitalized in December, they said we could see the chart after he was released. I’m sure glad my mom’s facility didn’t say that.
    • It seems apparent that as long as a provider feels it’s legally none of my business, we won’t be allowed to participate in data quality. When it’s your mother or child, that’s a biiiig problem.
    • Note that some providers get it, e.g. Dr. Ken Mandl of Boston Children’s Hospital (a participant in the webcast below, though he mostly didn’t talk about that.) They actively invite the family to participate in correcting errors.
  • Controlling costs: Insurance billing fraud and errors.
    • Three years ago I blogged about a substantial array of garbage in my insurance records. It was such a revelation that it ended up on the front page of the Boston Globe – not common for your average blog post.
    • Not only could wrong insurance data be used against a consumer as pre-existing conditions that don’t exist; a future system could read such data and draw dangerously false conclusions.
    • Again, the NeHC webcast below mentions what Dr. Mike Fuller of Greenville Memorial Hospital calls “the perpetual chart lie” and David Kibbe’s wonderful tale of “the Wicked EMR.”
  • If patients own it, they’ll have a right to know where it is and who’s doing what with it.
    • I recently met Heather Wellington of Patients As Partners, whose 29 year old twin Hillary died in February of Hodgkins Lymphoma, a disease that usually doesn’t kill. One factor in the complex mix was that in the transfer from one facility to the other, the records fell into a hole, and each facility thought the other had the ball. By the time the family said “Hey you guys, what’s next,” six weeks had gone by.

In the end, in my view, it’s about working together to make health care more effective, safe, and efficient. The importance of this is not always apparent until your time comes: I often say in speeches, “Patient is not a third person word.”

In our Society we say:

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Many observers are now saying that patients are the most under-used resource in healthcare. Dr. Warner Slack has been saying that since in the 1970s; one of his proteges is Dr. Danny Sands, my primary physician and President of SPM, who says “How can patients participate if they can’t see the same information?”

Abington Memorial Hospital, near Philadelphia, gets it: every day they print out a family-level list of the day’s information, so the family can follow along (making sure meds happen on schedule, etc). I asked if the family ever finds mistakes in the printout, and they said “Oh, all the time.”

In contrast to this, at a dinner in January I sat next to the wife of a hospital’s Chief Financial Officer, and she said that she’s been trying for years to get her husband’s own hospital to correct a medication error in her chart.

My bottom line: health IT depends on data quality; let patients help.

Those are my thoughts; here are views from two other SPM members. Then we’ll invite yours in comments.

Hugo Campos: Preventing cardiac episodes

SPM member Hugo Campos as a device implanted in his chest that keeps him from dying when he has an episode. He wants to go one better: instead of surviving episodes, he wants to learn how to prevent them, by understanding the data stream coming out of the device. Many blog posts here have documented his TEDx Cambridge talk and his appearances on National Public Radio etc.

(Notice: that’s an e-patient – actively working to be responsible for his well-being.)

Scott Strange: Interoperability

SPM member Scott Strangely pointed out another vital issue: his health as a diabetic is affected by how  well the available information is harvested and analyzed to help him control his health. (Note: another e-patient, actively working to be responsible for his condition.)

His problem is that all the different devices he has won’t talk to each other, and since he doesn’t own the data, he can’t dictate a solution. On the SPM member listerv, he wrote:

Diabetics see the interoperability issue in spades. Pumps, meters, CGMS systems that don’t talk to each other, requiring the patient to compare printouts from multiple system or hack together their own spreadsheets to do some pattern analysis.

We’ve just now started to see a couple of tools/sites that will allow you to upload data from almost any device so you can get an entire picture of food intake/insulin doses/glucose readings and still have hair left.

Both Hugo and Scott want to  play a more active role in staying healthy, and I’m sure many patients, parents and families would like to do the same. But they’re impeded from doing so, for reasons that often boil down to one simple fact: they don’t legally own the data, so it’s not theirs to make use of.

Your turn.

What do you think are the top five issues about who own your data?

Here’s the NeHC webcast on patient participation in data quality:


Posted in: medical records | policy issues | reforming hc | Why PM




9 Responses to “Who owns your data? Why?”

  1. Thanks Dave. One thing occurred to me as I was reading this is that the data is only part of the picture. The other parts are the software to analyze the data, hopefully from multiple devices, and then the training to be able to properly interpret the results.

    We may not be “certified” HCP’s, but when you are talking about your life of the life of a loved one a human being is capable of learning and accomplishing things they never dreamed possible.

  2. Dave, this is a great list of pragmatic reasons why your data should be available to you. But there is another fundamental reason, and that is the principle of autonomy. What I mean is that, should I want access to stuff that has resulted from conversations with/testing of me, I should without any obstacles be given such access. It is presumptuous of any system to think it knows better. If we are not given access to our records (should we want it), then the paternalism wins. Of course all of the reasons you mention above are important as well, and much more practical.

    • Marya, I agree about autonomy. In particular the work of Angela Coulter in patient autonomy was noted in Doc Tom Ferguson’s white paper, the (paradoxically) black icon on the right side of this blog. The closing chapter of that magnificent paper is “The Autonomous Patient and the Reconfiguration of Medical Knowledge.”

  3. Maureen Hall says:

    I would add to Scott’s comment that there is much to be done by healthcare organizations to turn the data into usable information that healthcare consumers can act on. As an example, I offer Thomas Goetz excellent TEDmed presentation — http://bit.ly/MLHCqX — on what can be done to make a simple lab test report consumer friendly.

    Much of what passes for health records today has been designed to obfuscate information, rather than share it.

    • Maureen, I agree that the information is usually not well presented, but in my experience in many industries, poor presentation is more often the result of people not realizing it could be better – or not having access to the kind of software you describe.

      After all, Goetz had to have his magazine’s writers create those graphics – it’s not software any hospital could buy and install. Yet. :-)

  4. John says:

    I feel two challenges which need to be addressed are transfer of data between physicians’ offices and accessibility of past data in an emergency.

    My mom was recently hospitalized through a local emergency room. I quickly realized they had no access to any of her medical information such as results of previous tests or physician findings. I now archive the important information to Google drive so I can get to it from any computer. I have to use HIPPA release forms to get the data from each medical facility, scan the information in to the computer, and transfer it to Google Drive. It is a cumbersome process but there are no other options.

    After my mom’s hospitalization, she saw five different physicians in 2 months. I realized at the time of our first visit with each physician, the physician didn’t have the results of the previous physician or any of the previous test results. I asked myself “Why don’t they have each others’ results? Why are they seeing her with only partial information?”. I found the records either don’t make it to their intended destination by fax, or they get to the intended destination too late. I again had to use HIPPA release forms, go to each physician’s office or testing facility, retrieve copies of the important records, and make copies for each of the physicians before her appointment. Luckily I have a medical background and know what to ask for.

    Why, in today’s world of instant communication, do we have to do such things?

  5. Kathy says:

    Dave-when a patient is on disability and the insurance company has the patient sign an authorization to release medical records these possible mistakes could cause a person’s claim to be denied. Have you ever encountered a situation such as this?

  6. […] e-patient stories tell how things go wrong when the best facts aren’t present. The 2012 SPM post Who owns your data? Why? has many more thoughts, and even more in the comments. My favorite is from Marya Zilberberg: […]

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