10
Dec2014

by Anita Pascoe, MS, CIP, Project Coordinator at Intermountain Healthcare

PRIM&R is pleased to share a post from Anita Pascoe, MS, CIP, a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who will blog here, on Ampersand, about the conference to give our readers an inside peek of what happened December 4-7 in Baltimore, MD.

On December 2, the day before I travelled from Salt Lake City, UT, to Baltimore, MD, to attend PRIM&R’s annual AER Conference, I broke a long standing promise to myself not to be suckered in by the latest technological fad and bought a new cell phone.

I had long resisted upgrading my old-fashioned “dumb phone” to its more desirable contemporary counterpart, the “smart phone.” However, I was informed by a hip mobile network sales person that my ancient flip-phone (and phone plan) were being phased out, and that I would not be able to renew my current plan going forward. I caved to the pressure of technology and salesmanship and came home with a brand new smart phone. The night before my flight, my twenty-something year old son took great pride in showing me the phone’s bell and whistles. Consequently, as I stepped off the airplane in Baltimore, I could not figure out how to answer a call from my husband, who was eager to know if I had landed safely. I had to call my son (hey, at least I knew how to dial out!) and have him remind me how to answer an incoming call. Smart phone. Dumb user.

Mobile technologies and “big data” were also buzz terms at the 2014 AER Conference, though for much better reasons than my ineptitude. One speaker mentioned that PRIM&R dedicated more than 18 hours of the conference schedule to sessions addressing issues related to the exponential growth of real-life, real-time data collection enabled by mobile technologies. (Try tweeting that mouth full.) While several other presenters commented that the global research enterprise is changing drastically due to the widespread use of information technologies, which are enabling easy and inexpensive access to vast amounts of data.

Following a keynote address by John Wilbanks titled “Informed Consent in the Mobile Era,” I overheard a conversation between two attendees who reluctantly agreed with Mr. Wilbanks statement that the explosion of mobile information technologies has blurred the line between our online and offline lives. Mr. Wilbanks also noted that our current data protection infrastructure is inefficient and unable to meet the demands of the rapidly changing big-data environment. But how can we keep up with changing information technologies and informational risks? Should access to data be restricted? How should the privacy and integrity of data be reviewed and regulated? Should we, as suggested by the 2011 Advance Notice of Proposed Rule Making, adopt and use current HIPAA standards for data security and information protections?

Paula Knudson, recipient of the 2014 Distinguished Service Award, summed up the situation during her acceptance speech, noting that “We need to rethink privacy and confidentiality.” The extensive collection of real-time data via mobile technologies represents has been a game-changer for researchers and research participants alike. The tsunami of participant-initiated data can, as Mr. Wilbanks so aptly noted, be used (and, potentially, abused) by all those who have access. While the quality and scope of research may be improved due to the richness of such data, its sheer volume represents major challenges. Ah, the devil’s bargain of the information age!

These topics are, of course, interesting to me as an IRB professional, but even more so from my perspective as a sociology graduate student. Not only is the global research community undergoing a paradigm shift, society itself is changing due to the increased availability of “passive sensing measures,” as one speaker referred to them. I am eager to hear what you think of these new developments. How should notions of privacy and confidentiality be redefined in the era of big data? What mechanisms should be put in place to ensure adequate data protections?

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