My Right to Data, Happiness, and a Long and Healthy Life

“To alienate [patients] from their own decision making is to change them into objects.” – P. Freire, Pedagogy of the Oppressed

The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its assertions are self-evident, basic, essential. The right to have information about oneself? – why the fuss? – this is America after all! Yet the practical and psychological impediments are so immense, and the impact on an individual’s failing health and the country’s economic troubles so potentially redemptive, we get why it’s so important to start spreading the news/ make a brand new start of it.

Much has been explained in the declaration’s FAQs, in the 30+ blog posts (see Gilles’ below, and e-Patient Dave’s here), and very succinctly in hundreds of tweets.

Here’s why I find this strikingly timely (and why I helped draft the document): I’ve been fortunate to work the past two years with a group of friends and colleagues formulating the Journal of Participatory Medicine, slated to launch this fall. We hope to show, through research papers and patient stories, that outcomes improve when people engage in decisions relating to their own health.

The Internet, high-speed connectivity, and the dawn of open-access publishing are innovations that have permitted entrée to the scientific literature by patients and caregivers in recent years. This, coupled with social networking in the form of community forums and support groups, has equipped many citizens with the ability to match or surpass their physicians’ knowledge of particular issues relating to their conditions and ailments. Participatory medicine postulates that combining patients’ commited research with health experts’ years of training and experience, brings a heightened level of critical analysis to the table.

Yet…. yet. For all the talk of the evidence-based approach to medicine, we are beginning to embrace the power of personalized medicine, where an individual’s numbers – be they systolic blood pressure readings or genetic propensity to stroke – may trump the double-blind, placebo-controlled study suggesting antihypertensive drugs are effective for 62% of the study population. Forget the bias of the funding institution, and forget the old-boys’ network of peer review. Assume the study belongs to the evidence canon that usefully informs 5% of physician decision making. It’s quite possibly not that important to me. Am I in the 62% of the population that will be helped by the drug, or the 38% that will not (and may be harmed by it or discomfited by the side effects). The truly enlightened, educated, empowered e-patient will be the one who knows and understands his or her numbers. The power of my data is how it quantifies me and informs my behavior and goals.

What’s exciting is that it’s not just about BMI and what you learn in health class anymore.  Kevin Kelly and Gary Wolf have made it cool with their Quantified Self blog (“Tools for Knowing Your Mind and Body”), and brought it to Wired Magazine as the theme of this July’s issue, Living by Numbers.

That’s why making it easy for us to know, interpret, and track our numbers over time — based on lab test results, scans, responses to drugs, and anything quantifiable — is going to make medicine smarter, people healthier, and the healthcare system far less costly. And while the focus here is on me, top of the list, king of the hill (yes, I’m from New York New York), I need to depend on the wisdom of crowds to push this agenda. That’s you, so please join the legions and endorse the Declaration at http://www.healthdatarights.org/endorsements, because as obvious and as unalienable as it sounds to have ready and ongoing access to your data, obstacles abound. I’ll let the other bloggers on this subject tell you about that.

For ongoing discussion about why participatory medicine matters, stay tuned to this site, with engaging and disruptive posts written by my colleagues @epatientdave, @gfry, @susannahfox, @docjohng, and others. This is the source and inspiration for our coming journal and society. (And for more on the visionary educator Paulo Freire and his prescription for e-patients, see my earlier post: Participatory Medicine as Revolution! Think Critically! Communicate!)

Disclosure: I was involved in drafting the Declaration and my job with Keas Inc. involves developing content and tools to help people stay healthy.

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7 Responses to “My Right to Data, Happiness, and a Long and Healthy Life”

  1. […] Article Sarah Greene, e-patients.net, 26 June 2009 SHARETHIS.addEntry({ title: “My Right to Data, Happiness, and a Long and Healthy Life”, url: “http://articles.icmcc.org/2009/06/27/my-right-to-data-happiness-and-a-long-and-healthy-life/” }); […]

  2. Sarah, this is terrific – perhaps the best all-in-one exposition I’ve seen about participatory medicine and how our data fits into it.

    I’ll swipe this:

    Participatory medicine postulates that combining patients’ commited research with health experts’ years of training and experience, brings a heightened level of critical analysis to the table.”

    This has led to several inspiring posts. Robin S, a Cushing’s patient, writes My Health Care Records, My Propertyabout harm that happened related to her own data. Blogger “Doc Rob” wrote a great comment in response, including this:

    I think there is a real fear on our side that is not unjustified that we will have to take a huge amount of time justifying why we didn’t comment on their low BUN, abnormal Albumin to Globulin ratio … There is so much interpretation that happens on our end (we act as a filter), that it seems to open the floodgates to let everyone in on it and let them try and decipher their results.”

    Another is the call to action Aux Barricades! from Craig Stoltz, echoing the cry of the French Revolution, where what was needed was total destruction of a total imbalance of power. I’ll leave you with some of his words, powerfully pointing out that we’re in a similar moment – this issue has immediate political importance in Washington:

    It’s important to have the interests of patients plainly declared… The most visible and active stakeholders [in current health IT talks] include big IT vendors, insurance companies, hospital conglomerates, physician groups, trade associations, venture capitalists and, not least, drug and device makers.

    They all have the usual “access” to the policy making process via lobbyists, contacts on the inside, campaign contributions and swank public affairs firms with expensive furniture in their reception areas and lots of friends in the media.

    And so yes, it’s essential to ensure patients are represented in the midst of all this.

    And none of those parties are even thinking about how to let us see our own data, in the systems they’ll sell to get the Federal stimulus money.

    Great post, Sarah. Our ability to help ourselves and our family members will be greatly affected by this.

  3. ePatientDave says:

    E-patients.net post: @sgreene24 on healthdatarights “My right to data, happiness, & a long healthu life” http://is.gd/1g6BC

  4. ePatientDave says:

    …medicine smarter, people healthier, and the healthcare system far less costly.” http://is.gd/1g6BC

  5. SusannahFox says:

    Must read: @sgreene24 on #myhealthdata on e-patients.net: http://is.gd/1kKRi

  6. Brian Ahier says:

    Must read: @sgreene24 on #myhealthdata on e-patients.net: http://is.gd/1kKRi (via @SusannahFox)

  7. RT @ahier: Must read: @sgreene24 on #myhealthdata on e-patients.net: http://is.gd/1kKRi (via @SusannahFox)

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