Health Data is Useful… if it Informs Conversations

Dr. Roni Zeiger, MD is currently Chief Health Strategist at Google where he has helped create and lead Google Health.  He continues to see patients on occasional evenings and weekends at a local urgent care center.  Roni earned his MD at Stanford and completed his internal medicine residency at the University of California, San Francisco.  Roni received a masters degree in biomedical informatics from Stanford University. He has written and edited several medical textbooks and has published articles on topics including continuing medical education, clinical decision support tools, and searching for health information on the web.  Roni also created a tool called Diagnosaurus which helps clinicians remember the possible diagnoses for given symptoms — the smartphone version of this tool has been used by more than 100,000 medical students and physicians.  Roni currently serves on the Board of Directors of the Society for Participatory Medicine.


At Health 2.0 in Paris last week, I said: “Data on its own is useless. It’s all about conversations.”  Let’s dig into this a bit more.

I’m a strong believer in evidence-based medicine.  We must learn from successes and failures, in particular those that come in the form of randomized clinical trials.  However, as I transitioned from my academic (and outstanding) residency training into clinical practice in the community, it became increasingly clear that we must make the majority of clinical decisions in the context of insufficient evidence.  And even when good evidence suggests a given course of treatment or testing, decisions often include complex pros and cons.  What should we do?

The answer, of course, is that we must have conversations.  The common goal of getting “the right information for the right person at the right time” is important, in particular because it allows us to have the right conversations.  Doctors must talk to their patients about the consequences of a false-positive mammogram and the risk of a perforated colon — and death — from colonoscopy.  Patients must talk to their doctors about how much they can reduce their risk of stroke or heart attack by taking various medications, exercising, and adjusting their diets.  Some of these decisions are straightforward, but most involve personal preferences about willingness to take medications, make lifestyle changes, and accept risks of side effects or risks of future illness.

In some cases, the choice is between an untreated deadly cancer and a hopefully-less-deadly cure.  Such cases underscore how important conversations are about data and preferences.  Over time, we will have more data from traditional clinical trials, from patients who share their well documented experiences with others, and from analysis of data in electronic medical record systems.  The addition of genetic information to these data sets reminds us that in some ways, every person represents a unique trial with a single participant.

We are lost without data, yet data alone cannot guide us.  The increasingly rich data about health provides context for an increasingly important set of conversations each of us must have about our health related decisions and those of our loved ones.  This is what Participatory Medicine is all about: conversations between pateints and doctors, between patients and patients… conversations among all of us working as colleagues to improve our health.

This post was cross-posted here on the Huffington Post blog.

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Posted in: general | net-friendly docs | patient networks | positive patterns | trends & principles | Why PM

 

 

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25 Responses to “Health Data is Useful… if it Informs Conversations”

  1. […] Article Roni Zeiger, e-patients.net/Huffington Post, 12 April 2010 SHARETHIS.addEntry({ title: "Health Data is Useful… if it Informs Conversations", url: "http://articles.icmcc.org/2010/04/12/health-data-is-useful%e2%80%a6-if-it-informs-conversations/" }); […]

  2. Roni,

    Absolutely! This weekend I read Jerome Groopman’s Anatomy of Hope, with its searing stories of this physician’s odyssey through decades of cases, being with patients facing probable death. Boy, we talk about clinicians being compassionate – these stories left me feeling compassionate for the docs’ situation.

    I think as participatory medicine evolves, and we all (physicians and patients alike) get over the idea that physicians should be all-knowing, we’ll start to see that conversations really are needed.

    It’s so great to know you. Post more.

    And welcome to the Board – thanks for serving!

  3. Roni’s point needs to be repeated many times:

    Conversations are the only way for patients to put medical data in perspective and context. It is what makes e-patients able to understand at a high level tremendous amount of data and information about a single disease.

    It is also the only real tool health professionals have to be able to understand the unique experience of each patient.

    It is not just by chance that while the participatory medicine movement takes off the first program of narrative medicine opens (at Columbia University school of medicine). Their definition of Narrative Medicine supports Roni’s statement:

    Defined broadly as medicine practiced with narrative competence, narrative medicine incorporates textual and interpretive skills into the practice of medicine. When doctors can recognize, absorb, interpret, and be moved to action by the narratives of their patients, they can practice a medicine marked by empathy, accuracy, and effectiveness.

    • Deborah Bell says:

      I agree totally – but find in real life that doctors often don’t have enough time to really discuss situations with their patients. If it’s life or death, yes. If it’s not – the time element becomes significant.

      So – we get back to health reform on a primitive level, where it is possible for doctors to spend quality time with all of their patients.

      It has take me years but I currently have doctors who listen to me – but they are definitely the exception and choose to be. Most doctors are forced by circumstances to rush through their appointments. The practice of medicine is too often controlled by insurance companies…

  4. YES! @RZeiger post on e-patients.net & HuffPo "Health Data is Useful… if it Informs Conversations" http://is.gd/bpYPe

  5. SusannahFox says:

    Intriguing comment by @rzeiger at #health2eu abt health data, now a fantastic essay: http://bit.ly/aKHdmN

  6. RT @bacigalupe: Health Data is Useful… if it Informs Conversations http://bit.ly/aKHdmN #health2eu (via @rzeiger @dirkstanley @shirt) //true

  7. Brian Ahier says:

    Health Data is Useful… if it Informs Conversations. http://bit.ly/aKHdmN #health2eu (via @rzeiger)

  8. Clearly data are useful. We’d be clueless without –

    But a lot of people don’t realize the extent to which “data” tell us differing messages based on how they’re analyzed, presented and framed. So we can talk about published studies all we want, and look even at the figures within those, but unless patients and doctors really understand what goes into those “numbers” or “facts” and what are sometimes omitted/excluded from studies, we’re vulnerable to misinformation.

  9. Hi Elaine – good to meet you.

    So are you saying “Yeah, the data isn’t the point itself – the data just serves the conversation”?

    I love that because sometimes people think we here have asserted that if we just have PHRs everything will be fixed.

  10. Christine says:

    There are two cultural notions of health and cure: medical-technical and spiritual/personal (and even commonsense). Without intelligent narrative, medical practice is a senseless mess.

  11. There is of course the corollary to Roni’s point: conversations about medical problems or conditions are incomplete is they are not supported by data.

    I am also convinced that the differences between pure data and narrative will completely blur in the next few years.

    In the end everything is data and people are already ending up making more or less sense of that data depending on the quality of the filters they use to extract the relevant information set.

  12. Susannah Fox says:

    The smart money is on “listening more than asking” in all kinds of research. Tracking data AND tracking conversations.

    Please see, for example, the conversation that’s been sparked by this post by Patti Brennan on the Project HealthDesign blog:

    Listening to the Expert
    http://projecthealthdesign.typepad.com/project_health_design/2010/04/listening-to-the-expert.html

    One of the comments is from a Parkinson’s researcher, which reminds me – if you haven’t heard about the Parkinson’s patient who found he could bicycle better than he could walk, please go immediately to:

    http://www.nytimes.com/2010/04/01/health/01parkinsons.html?src=mv

  13. Susannah,

    Thanks for the link to the NYTimes article. It reminded me that the central element (often invisible) in all these conversations we have about the role of the modern patient in the continuum of care is the evolution of the definition of scientific evidence.

    As I wrote earlier in this blog, helping to beter define what is acceptable evidence in the new always-on networked world, will be a priority of the Journal of Participatory Medicine. I hope we’ll have many partners to advance our understanding of this true paradigm shift.

  14. […] it is time to talk about the power of health conversations informed by data, the self-experimentation that people engage in using information often found online, the impact of […]

  15. RT @rzeiger: My most recent blog post: Health Data is Useful… if it Informs Conversations. http://bit.ly/aKHdmN

  16. RT @hout: RT @rzeiger: My most recent blog post: Health Data is Useful… if it Informs Conversations. http://bit.ly/aKHdmN

  17. @SusannahFox @zephoria's post should be read with @rzeiger Health Data is Useful… if it Informs Conversations http://bit.ly/aKHdmN

  18. SusannahFox says:

    Agree: @gfry says @zephoria's post should be read with @rzeiger Health Data is Useful… if it Informs Conversations http://bit.ly/aKHdmN

  19. Read this RT @rzeiger My most recent blog post: Health Data is Useful… if it Informs Conversations. http://bit.ly/aKHdmN #health2eu

  20. SusannahFox says:

    "Medical data needs storytelling to be put in context. Patterns appear" – @gfry See also: http://is.gd/bpYPe by @rzeiger

  21. Mike Baldwin says:

    RT @SusannahFox: "Medical data needs storytelling to be put in context. Patterns appear" – @gfry See also: http://is.gd/bpYPe #hcsmeu

  22. Joe McCarthy says:

    I’m late to this conversation, but wanted to contribute two pieces of data, and I hope they are useful.

    Firstly, I wanted to make explicit something I believe is implicit in this conversation (but not in the title of the post): data can inform conversations, and conversations can provide useful data.

    Secondly, the Columbia University narrative medicine program’s emphasis on “empathy, accuracy, and effectiveness” reminds me of an NPR essay by Scott Simon about Dr. Edward Benzel and the Cleveland Clinic in February, which prompted me to research and write a bit about Clinical Wisdom: Knowledge, Experience, Compassion, Creativity and Honesty. Most relevant to this conversation may be a quote by Sir William Osler in a paper by Benzel: “The good physician treats the disease; the great physician treats the patient who has the disease”.

  23. I have to agree w/ this. RT @rzeiger My most recent blog post: Health Data is Useful… if it Informs Conversations. http://bit.ly/aKHdmN

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