Samantha Adams Festschrift: Keeping Close Tabs—In Memoriam Samantha Adams

Introduction

I had the opportunity to share a platform with Sam Adams twice, once at an American Medical Informatics Association panel and also once in London, at the European Centre for Ethics, Law and Governance in Health Information Technology. In 2014, we had agreed to speak on aspects of the “commodification” of patient information. In the abstract for my contribution I had written:

Much of the discussion of “commodification” of patient—and more generally, personal—data revolves around the use that those who gather data on a large scale make of this wealth of information, or more precisely, about the ways they turn data, often of uneven quality but in large volumes, into information with intrinsic value. […]

In healthcare, analytics has been applied to service improvement in hospitals and other provider organizations. The large-scale distributed research data repositories currently envisioned by such projects as the PCORI Clinical Data Research Networks, are expected to bring value to healthcare delivery through comparative effectiveness research (CER) and patient-reported outcomes. In due course, it is anticipated that industry, including pharma, will be able to mine these to identify optimal care pathways, to accelerate drug development, to rationalize services, and to manage public health.

A more intimate example lies in the concept of Microsoft's HealthVault, which, at least at one time, had ambitions to join up all the commonly collected health-related information about a person (under the individual's control, so it was said) from the content of their shopping basket (courtesy of their supermarket loyalty card), to their daily exercise levels (through wearables or gym machines), to their relationship with their healthcare provider (numbers and kinds of visits, prescriptions, etc.). On hearing this from a Microsoft executive at a 2008 conference, I wondered if my mobile phone would soon be delivering messages about the inadvisability of chocolate, given my BMI, just as I was reaching into the shelf in the store.

Sam told me that she read this on the flight over to the United States from the Netherlands and had startled her neighbor on the plane by laughing out loud. This is the kind of bittersweet example of the possible uses of context-sensitive, ubiquitous technology in health care that we both found fascinating, often confusing, and sometimes alarming.

• References

• 1 Adams S. Ubiquitous digital devices and health: reflections on Foucault's notion of the ‘clinic’. In: Adams S, Purtova N, Leenes R. , eds. Under Observation: The Interplay Between eHealth and Surveillance. Berlin, Germany: Springer; 2017: 165-178
• 2 Adams S, Purtova N, Leenes R. , eds. Under Observation: The Interplay Between eHealth and Surveillance. Berlin, Germany: Springer; 2017
• 3 Thaler RH. Misbehaving: The Making of Behavioral Economics. New York: W. W. Norton; 2015
• 4 Adams S. Post-panoptic surveillance through healthcare rating sites. Inf Commun Soc 2003; 16 (02) 215-235
• 5 Duhigg C. The Power of Habit: Why We Do What We Do in Life and Business. New York: Random House; 2012
• 6 Kepes B. Google Users-You're The Product, Not The Customer. Forbes; December 2013. Available at: https://www.forbes.com/sites/benkepes/2013/12/04/google-users-youre-the-product-not-the-customer/#4d2ed52476d6 . Accessed June 18, 2018
• 7 Purtova N. Health data for common good: defining the boundaries and social dilemmas of data commons. In: Adams S, Purtova N, Leenes R, eds. Under Observation: The Interplay Between eHealth and Surveillance. Berlin, Germany: Springer; 2017: 179-210
• 8 Rosenbaum L. Swallowing a Spy - the potential uses of digital adherence monitoring. N Engl J Med 2018; 378 (02) 101-103
• 9 Habermas J. Towards a theory of communicative competence. Inquiry 2008; 13: 1-4 , 360–375
• 10 Foucault M. Omnes et Singulatim: Towards a Criticism of ‘Political Reason’. The Tanner Lectures on Human Values. Delivered at Stanford University, October 10 and 16, 1979. Available at: https://tannerlectures.utah.edu/_documents/a-to-z/f/foucault81.pdf . Accessed June 12, 2018