Is this sort of "Big Brother" approach OK, or was it taken too far? (Follow the link to a discussion of the British case I mention in the article.)
Medical ethicist Art Caplan, my brother at the (HIPAA) bar Adam Greene and I were quoted in the AIS Health article. Greene noted that HIPAA does not cover the posting of information by or about a patient on a social network and its review by a provider. Caplan and I agreed that what's public is public, and what's private is private.
I spoke yesterday at the Massachusetts Bar Association's "Hot Topics in Healthcare" program. (Webcast live, and available behind a paywall at the link.)
I am proud to be a member of The Walking Gallery. If you are not familiar with Regina Holliday and her unique brand of health care activism, you should be. See her blog, and follow the links in the sidebar to more Walking Gallery details. By way of example, she has written a blog post describing each hand-painted jacket in the gallery and its connection to the wearer's health care story and his or her connection to health data liberation. You can start with her post about my jacket, Friendship Pins.
Check out the newly-released video about this ongoing project below, and join the movement:
CIO.com covered the presentation I gave at Strata Rx on the idea of patient-controlled donation of data for purposes of data analysis. Putting control in the hands of patients avoids some potential HIPAA issues and may make for richer data sets.
Healthcare IT News ran a cover story in its November issue on the use of Open Notes at Beth Israel Deaconess Medical Center. See further discussion of the piece and links to more information on Open Notes at e-patients.net. I was interviewed on the issue of patients' rights to access their own medical records.
Over time, the app maturity model will see apps progress from being recommended on an ad hoc basis by individual physicians, to systematic use in healthcare, and ultimately to an end goal of being a fully integrated component of healthcare management. There are four key steps to move through on this process: recognition by payers and providers of the role that apps can play in healthcare; security and privacy guidelines and assurances being put in place between providers, patients and app developers; systematic curation and evaluation of apps that can provide both physicians and patients with useful summarized content about apps that can aid decision-making regarding their appropriate use; and integration of apps with other aspects of patient care. Underpinning all of this will be the generation of credible evidence of value derived from the use of apps that will demonstrate the nature and magnitude of behavioral changes or improved health outcomes.
(Emphasis supplied.)
We are nowhere near this endpoint -- integration of the use of health apps into health care management -- right now, due to a number of factors.
Health care diagnostic and treatment tools are on a trajectory of development that is making science fiction of five decades ago into fact. Two current examples: The X Prize contest to develop a real “tricorder” – a handheld wireless device that monitors and diagnoses health conditions – comes to us courtesy of Star Trek (the original U.S. television series was set in the 23rd century) and the recently-announced prototype of a miniaturized implantable continuous blood monitor the size of a 1.5 cm length of pencil lead developed by a team at EPFL in Lausanne brings to mind the movie Fantastic Voyage, in which a surgical team in a submarine was miniaturized and injected into a patient’s bloodstream.
I spoke yesterday at the StrataRx conference in Boston, as part of the data liquidity track. This was sort of a blue sky presentation (as you can tell from the first slide); the thought was to explore the notion of building big data analytics on top of a data store populated by health record information obtained as a result of patient requests. Why? Because doing it that way would bring the data out from under HIPAA and HITECH regulations. Patients could contribute as much or as little of the data as they wish, patients could be compensated for their contributions, and other pesky HIPAA restrictions would fall by the wayside. I used one company's newly-announced service as an example, but there are others in this space as well.
I recently caught up with Nate Gross (@ng), co-founder of Doximity (@Doximity), to hear about how the company is building out the social graphs of physicians. Earlier this year, Doximity hit a milestone -- doc #200,000 -- and Nate filled me in on where the company has been, and where it's going.
Nate will be speaking at Connected Insight Summit, the annual conference presented by Activate Networks, taking place October 8-9, 2013, in Cambridge, MA (use discount code: HARLOW50 for 50% off registration).
Have a listen to our entire conversation, and see the transcript below.
