e-Health / Pharmacovigilance

Medicine 2.0 @ Harvard: Ethics and lively debates

One of the more fiery sessions I saw at Medicine 2.0’12 @ Harvard, was coincidentally the one I chaired on “Ethical & legal issues, confidentiality and privacy”. This was not one of those sessions you moderate where you have to come up with questions for the presenter in the absence of any from the audience! Attorney David Harlow (of the Harlow Group and the excellent HealthBlawg) presented, “Square Peg In a Round Hole: Data Privacy And Security Laws And Standards Meet Medicine 2.0” to a completely packed house (that was standing room only at times). Harlow’s presentation was one of the first in which it was clear from the start the the number of questions would far outstrip the number of minutes allotted for them. The question posed to him that may have produced the most varied answers (and follow-up queries as attendees chimed in) was, “is it ok to Google your patients before their visits?” This moved us into the murky area of what is legally allowed vs what is acceptable for a clinician to do. The discussion took a brief detour as it explored the line between being a proactive healthcare professional and entering  the “creepiness continuum”. As with many issues in this topic, that ‘line’ was a moving target based on factors including personal perspective and even country of origin. Of note, Harlow tweets under @healthblawg and also has many other social media endeavors (including recent #med2 interviews of @idoc24 and @Berci). He is pictured here wearing his ‘rainbow button’ Walking Gallery jacket  that was created by @ReginaHolliday (and inspired by the Blue Button).

After what seemed like a Rapid Fire presentation due to the enthusiasm of the audience and the pace of the questions, the actual Rapid Fire (4 minutes + 1 minute) sessions began with Carol Bond, EdD, RN. (@cbond) and Osman Ahmed, PhDCand (@osmanhahmed) from Bournemouth University in the UK presenting, “Using Health Discussion Board Posts as Research Data; How Contributors View the Ethical Considerations“. Given the widespread use of data mining of patient social media sites in research, this was a particularly timely topic for researchers, e-patients, and those serving on/interacting with an institutional review board (IRB)/Ethics Board. Bond and Ahmed recruited participants from  four diabetes forums and conducted a total of 26 interviews. Several themes emerged from this process, including a couple that may seem counter-intuitive: participants had positive attitudes towards researchers use of forum content (with some limitations) and the desire for clinicians to read their forum posts so that those healthcare providers would have a better idea of what is important to them as patients. A struggle between participants wish to retain control of their information while acknowledging they have placed it in the public domain was also elucidated.

The next Rapid Fire was the provocatively titled “What Evil Lies Beneath, Tracking the Hidden Malevolence of Online Pharmacies” from the group at Central Michigan University led (in this instance) by Paul Albee, PhD and including long-time researcher in this space, Lana Ivanitskaya, PhD. Albee provided an overview of the issues with rogue online pharmacies in terms of operations, motivations, and transiency (e.g., online pharmacies claiming to be in Canada generally are not and ‘live’ about 7 days before re-locating). Security was also a major theme, with Albee reporting that the computers used to access/view these online pharmacies for the study were subject to massive attacks. In fact, it may be that the indirect costs associated with use of rogue online pharmacies (versus the handful of legitimate ones online) may be even more substantial for non-health related reasons than for health-related reasons…unless you attempt to go after the site operators as Albee insinuated.

The last Rapid Fire was “Risk Assessment of Direct-to-Consumer Social Media Advertising for Illicit Online Drug Sales” by Timothy Mackey, MAS from the Institute of Health Law Studies, California Western School of Law. Mackey took the approach of creating  a fictitious piece of electronic direct-to-consumer advertising using Web 2.0 tools (eDTCA 2.0) to promote a ‘no prescription’ online pharmacy; Mackey also noted conventional DTCA is legal in few countries outside the USA and New Zealand. Adverts for the ‘no prescription’ drug site were placed on Facebook, Twitter, Google+, and MySpace and linked out to a static ‘site error’ landing page.  Interestingly (and perhaps unsurprisingly), only the study’s Google+ site was suspended without explanation nor response by Google. As there was no marketing, SEO, or actual drugs being sold, the site still logged 80-150 unique visitors/month during the six months of the study period including high traffic from USA and China. One of the takeaways was just how simple it was for a non-tech focused researcher (Mackey studies global public health) to create and advertise a channel for illicit sales of prescription drugs.

Overall this was a very engaging panel filled with lively debate and discussion. As is the nature of the beast, it raised as many questions as it provided answers…but this is an integral part of finding solutions. The panel also appeared to bring together new potential collaborators (from panel and audience) echoing the observation on Twitter by @BrianSMcGowan:


Next post from Medicine 2.0’12: Student impressions by a first-time attendee

Previous posts from Medicine 2.0’12:

Harvard by the Numbers

mHealth Biz Session

Update: David Harlow posted a slidecast of his presentation.

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