- Personalized Medicine: Empowered Patients in the 21st Century by Barbara Prainsack
By Barbara Prainsack.
New York University Press, 2017. 288 pages. https://nyupress.org/9781479814589/personalized-medicine/
In Personalized Medicine: Empowered Patients in the 21st Century, Barbara Prainsack examines power dynamics in health data collection and the big business that capitalizes on it, as well as the possibilities for data to make medicine more personal. She cautions against the popular idea that big data and technological innovation will improve health care. The claim that health data will deliver personalized precision medicine is haunted by the reality that trust, human connection and care are the keys to successful medicine. Prainsack shows how platforms that "activate patients" as "empowered" consumers and producers of health data can be a front for a new way to earn profit; this is a dangerous mirage because the hyper-collection of data can reproduce social inequality through new forms of surveillance, harm citizens through predictive analytics, and produce self-blame for folks who fail to live up to standards of selfdiscipline when digital health maintenance is a civic responsibility. The book is based on ten years of research and policy-related work in places such as Israel, Europe and the U.S. A more extensive discussion of these research projects and their methods would be a nice addition to the book.
The book sets the stage by showing how health systems, governments, and the private sector increasingly frame personalized medicine as a technological phenomenon, where results are achieved using patient data and algorithms to deliver precision medicine. Its popularity is evidenced in the rapid emergence of digital health start-ups and an increase in public funding and partnerships for data-driven health care. This vision of personalized medicine relies on the hypercollection of data and requires patients to act as research contributors. Prainsack states that the main objective of the book is to tell the untold story of "patient work", "the witting or unwitting contributions [of data] that many of us make when engaging in online tools, when using mobile applications, or when 'sharing information'"(11). As a starting point she suggests we ask two key questions: whether people are aware of the fact that their data is being used and/or sold, and if people can opt out. She uses her own personal experience with the NHS to explain how opting out requires ample social capital and may lead to negative sanctions.
Prainsack argues that actors in the digital health domain today do not fit into old binaries of public versus private, ethical or unethical, bottom up or top down. The book illustrates this argument with a range of provocative case studies. Instead of focusing on these classifications, she problematizes "patient-work", categorizes levels of participation, and offers a detailed examination of the possibilities for empowerment and exploitation in the way patients contribute data to medicine and science.
One of the most fascinating and frightening parts of the book is when Prainsack describes the vulnerabilities citizens face with the hyper-collection and dissemination of health data. People may be harmed when information is shared in health-related platforms and then sold to data brokers or credit bureaus that provide health risk scores. Prainsack explains that entire communities can be redlined when data indicators predict certain communities will be risky mortgage clients (18–19). Another vulnerability she highlights is when people are coerced into trading their private data for something they cannot otherwise afford. She gives the example of the pharmaceutical company Amgen (2015) who offered patients a cholesterol drug at a discounted price if they shared their personal data (121). She argues we need special protections from this kind of exploitation, given the universal value of health.
After analyzing the power dynamics of patient-work in digital health, Prainsack transitions to questioning the assumption that personalized medicine requires data and expensive technology. She examines how technology shapes what counts as evidence in medicine and argues that quantifiable data produced through technology is prioritized over subjective measures like patient values. She points out that this trend de-skills doctors by encouraging the use of...