Health 2.0 Spring Fling comes to Boston this week. The pre-conference code-a-thon is already history. I'm going to help kick things off with a Health Law 2.0 session on Monday. For those who'd like to follow along at home Monday and Tuesday, here's the tweetstream; the hashtag is #health2con.
Smart Social Media Policy for Healthcare I've been working with health care providers on social media issues from a variety of perspectives; this article from Monster.com is focused on the employment-related issues that arise from health care organizations' employees' use of social media.
I look forward to seeing old friends and new at Health 2.0 in Boston.
While we're on the subject of conferences, I'll mention just one more: I'll be speaking at Medicine 2.0 in Boston this fall, and HealthCamp Boston will take place the day before: September 14. Please hold the date for HealthCamp -- whether or not you'll be attending Medicine 2.0 -- and let me know if you'd like to help organize (or sponsor) this unconference.
Meaningful Use Stage 2 regulations were released in March by CMS and ONC. Over the past month or so, I've been working with other members of the Society for Participatory Medicine (thank you, all) to prepare comments on these regulations from the patient perspective. Last Friday, we filed two comment letters on the proposed regulations. One letter to the ONC on Meaningful Use Stage 2, and one letter to CMS on Meaningful Use Stage 2. Each letter opens like this:
The Society for Participatory Medicine applauds the work done to date in focusing on patient engagement in the proposed Stage 2 Meaningful Use regulations and the proposed Health IT Standards regulations. It is our hope that the final requirements will be even stronger and more focused in this regard than the current drafts. As set forth in greater detail in the attached letter, we have a number of comments that we believe will improve the regulations and their use as a lever to improve patient experience, patient engagement, patient care and, ultimately, patient outcomes. We would like to highlight two in particular:
We favor improving the likelihood that patients will access their data by allowing for some automation of the process of accessing and downloading patient data, using existing technologies that protect patient privacy and security.
We also favor immediate patient access to information in the patient’s electronic health record – unless the patient has elected otherwise.
The overarching principle with respect to patient access to electronic health record data running through the entire meaningful use regulation and the health IT standards regulation should be:
“Nothing about me without me.”
The Society for Participatory Medicine has individual and institutional members nationwide and has a governing board comprised of both clinicians and patients. It was founded to study and promote participatory medicine, which we define as being centered on networked patients shifting from being mere passengers to responsible drivers of their health, and providers who encourage and value them as full partners. For further background on the Society and its activities, we invite you to see the Society’s website (http://participatorymedicine.org), its online journal, The Journal of Participatory Medicine (http://jopm.org) and its blog, e-patients.net.
I invite you to read the Society for Participatory Medicine press release, Participatory Medicine Society Urges Quick Patient Access to Medical Information, outlining the Society's stance on the issue, and the recent posts on the Society's blog, e-patients.net, explicating the SPM Meaningful Use Stage 2 comment letters a little further, and putting them in context -- in particular, juxtaposing them against the American Hospital Association comments calling for a 30-day delay in patient access to information once it's in their EHRs. (The proposed rule calls for up to 36-hour and 4-business-day delays, depending on context, and the SPM comments call for immediate access.) Technologically literate commentators, including Fred Trotter, take issue with the AHA's view that 30 days are needed to respond to a request for an EHR. (Fred's post says a lot more -- check it out.)
Finally, take a few moments to consider Regina Holliday's comments on the proposed rules, filed in the form of a slideshow featuring her paintings:
Facebook has announced a new box you can check off on your profile: organ donor. (It's available in the US & UK so far, for a total of almost 200 million members; more countries in the works.)
What does this mean and why should you care?
At bottom, this means that Facebook is adding yet another data point to the myriad bits and bytes it already has on so many of us (What's your birth date? Have you ever broken a bone? etc.), which it slices and dices in order to target ads and sell to third parties (and flog news of its upcoming IPO). Checking off the organ donor box on Facebook doesn't make you an organ donor (you need to register with your state DMV), but serving up easy links to organ donation registration sites and motivating registration by showing that friends have registered (or at least checked the box) -- i.e., "norming," in the parlance of BJ Fogg, as quoted in the NY Times piece linked to above -- is likely to increase donor registration, and to increase family awareness of the choice at (or, preferably, before) the time when family members are called upon to carry out the wishes of a donor.
If you are spooked by the idea of Facebook having this information about you, I would ask whether you make your birth date visible on Facebook. I don't; revealing birth date makes identity theft that much easier, and I'm more spooked by that possibility than by the prospect of everyone on Facebook knowing my organ donor status. I am not concerned (as some are) about someone making the decision to treat me as nothing more than a vessel for donated organs, and I think that it should be possible to strike a balance between a good death and preserving organs for transplant.
Anything we can do to legitimately increase the supply of organs for donation is a good thing -- too many people languish and die while waiting for an organ. My problem with this solution is that it is as much about Facebook as it is about organ donation. While I would expect donor numbers to go up as a result of this initiative, the numbers are not likely to be too significant, because implementing the choice to donate organs requires doing more than clicking something on Facebook -- it requires going through all the steps necessary to memorialize an organ donation in the real world.
I would like to see Facebook using its muscle to lobby for a presumed consent law -- meaning that in the absence of formal directives to the contrary, the presumption should be that a person has consented to organ donation at the appropriate time, reversing the presumption now in effect in this country. The company has taken an interesting first step, and it will be interesting to see if it pursues this issue beyond the limits of its own pages and monetization strategy.