Crossing a threshold: the e-Patient movement enters wave 2

I’ll be blunt here: three years ago, late 2009, when I gave my first keynote speech ever, many observers said “Well Dave, that’s fine for you, but you’re the only one.” I replied: if I’m the only one, there’s nothing to talk about. And they were wrong: the e-patient movement is booming. We are many, and we’re being recognized.

This morning my Google Alert popped this up, on ScientificAmerican.com:

Could ePatient Networks Become the Superdoctors of the Future?

It’s a re-post from Fast Company, the business magazine. And honestly, what I love most is that there’s not a word about me. The spotlighted e-patient is Sean Ahrens of Crohnology, about which we’ve written.

Numerous other companies are cited, too – including DiabetesMine, which was the first successful “exit” (as they say in Silicon Valley) for a patient community: they were the first to be acquired by another company. Also cited is 23andMe, which recently acquired our friends at CureTogether, a radically patient-based community where patients declare everything that’s important.

The other thing I love is that many many e-patients and vendors were at the MedicineX conference this weekend – and I’m not there, busily on the road carrying the message to other audiences.

We are many. We are spreading out. We are a new, growing industry, with real business impact. The movement is entering its next phase, a generation beyond its noisiest founders.

 

 

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4 Responses to “Crossing a threshold: the e-Patient movement enters wave 2”

  1. Stephanie says:

    The growth of the e-Patient movement is particularly noteworthy and exciting as your blog post shows! The re-posted article in Scientific American does a nice job as well, giving an overview of the pressures driving this development in patient care as well as profiling the work of Sean Ahrens with his startup Healthy Labs. The momentum of the e-Patient community is certainly picking up as indicated by the successful “exits” mentioned, but it is worth noting that it has also taken considerable time for the e-Patient community to mobilize itself.

    I am currently studying the evolving practice of patient care through a course at Rice University focused on medicine and media, and recent class discussions and readings have taken a look at the impact of the emergence and implementation of technologies on medical practice, particularly over the past century. If we concern ourselves with the last 30 years, we have seen the creation and rise of Internet/broadband, the PC and laptop, mobile phones, email, and DNA testing/sequencing – all technologies that the University of Pennsylvania’s Wharton School deemed to be the “life changers” of these past 30 years. Still, medicine continues to largely operate through an approach that focuses on a generalized solution, rather than through an approach that is tailored to the individual as would be reasonable if these technologies were to be actually used to their full potential. The question truly remains – why has it taken so long? While it is convenient to peg the resistance of medicine to change as the culprit, it would be very helpful to hear more about the factors that have slowed the development of patient-specific treatments.

    Thankfully, the work of patients themselves to forge a community based off of these “life changers” has really begun to take off, of course aided by the convergence and integration of the aforementioned technologies. Yet, it would be interesting to hear more about the obstacles to the e-Patient movement and how the movement is looking to overcome them through lobbying, technological implementation, etc. As an aside, while much of my perspective is drawn from my own and course readings, particularly The Creative Destruction of Medicine by Dr. Eric Topol, I would appreciate it if additional thoughts as well as sources for further reading were shared. Thank you for such a thought-provoking post and a great blog!

  2. Sherry @cascadia says:

    Actually many many people already understood the importance of designing health IT around patients and developing online patient communities by 2009. In fact in 2005 we implemented the patient portal for 580,000 people along with online communities for patients.. In my own family we blogged back in 2002 when my mom had breast cancer and Tom created the term ePatient over a decade ago.

    It is great to see that more of the public are becoming aware of the movement though and you have helped tremendously.

    We have reached the time where large groups and organizations will lead us forward and less and less work by advocates will be required.. CMS, ONC, PCORI, RWJF and many many others are investing billions in this effort.

    • Yes, Sherry, as I’ve been saying for years, you and Group Health were way ahead of the curve. The “truth” isn’t what’s new, it’s the massive evidence in this well designed and well funded study…

      Throughout my cancer and the work since then, my own compelling question has been “What can be said that will make any difference??” A non-trivial question, because information alone has rarely (if ever) changed behavior…. among patients nor clinicians, nor anyone else as far as I can tell.

  3. Khoi Trinh says:

    A doctor’s skill level may be highly correlated with the number of cases that he or she has seen, but that does not even translate in any way into skill level of a collaborative or system. Doctors are highly trained and understand which data points are valuable in diagnosing a patient. The skill level gained with increased patient cases is due to a refinement of his training and knowledge. A collaborative doesn’t have the basic training needed in order to be able to improve its “skills” and so even if it is able to see a million cases, it is highly arguable whether or not that will actually improve its ability to diagnose or treat a patient.

    If data were all that was necessary to treat a patient, patients wouldn’t need to wait weeks to see a doctor. They could record their own data, send it to the doctor, and get medical diagnoses electronically. However, the problem is that patients do not have the knowledge necessary to know which data are important and which are useless. When going to the doctor’s office, the physician doesn’t just take measurements and magically determine the diagnosis. The physician also has to listen to the patient’s story, be able to parse the information, and eliminate extraneous information in order to fully assess the patient’s situation. The system won’t have the experience necessary to be able to do this. Even with a million cases, each new case will be slightly different, and these differences may be important in the case, and it is doubtful that a crowdsourced system will be able to fully understand these subtle differences.

    A crowdsourced system can be very efficient for common issues and diseases, but saying that no one will go to a doctor’s office in ten years is a fanciful ideal. Even with a million cases in the system, there is no way to have enough data from enough different diseases to give confidence in every possible case, especially since patient narratives of their cases cannot be fully trusted.

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