English: The PatientsLikeMe Profile of Stephen Heywood, brother of the co-founders of the company, who was diagnosed with ALS when he was 29 years old. This profile describes his experience with the disease including his functional rating scale, treatments, symptoms, breathing capacity, and weight. (Photo credit: Wikipedia)
As part of the digital health phenomenon, a plethora of interactive digital platforms have been established in recent years to elicit lay people’s experiences of illness, medical treatments and healthcare. These include such sites as PatientsLikeMe, Smart Patients, Health Unlocked, CarePages and Cure Together, as well as many condition-specific sites.
The function of these platforms, as expressed on the main pages of their websites, is to provide the tools and forums whereby patients and caregivers, and in cases medical practitioners, can share their experiences with others, benefit from the support and knowledge of other contributors, comment on healthcare providers and contribute to large aggregated data archives as part of developing better medical treatments and services and conducting medical research. However what may not always be readily apparent to the users of these platforms are the growing commercial uses by some of the platforms’ owners of the archives of the data they contribute.
I have just published a working paper (available here) in which I discuss what I term ‘the digital patient experience economy’. This term relates to patients’ online accounts and details of their medical conditions and their ratings and opinions of healthcare providers and institutions having become valued not only for the support and information they offer to other patients but also for the increasing commercial value they have for other actors. These data have become treated as another form of digital intellectual property, owned not by the patients themselves but by the companies that encourage patients to upload their experiences that accumulate in the data archives they own and over which they have control. While some of these platforms are not-for-profit and operate solely as forums for patients to interact with each other or to report their experiences with healthcare providers (for example, Patient Opinion), a growing number have been established by companies seeking to profit from the harvesting of these data and on-selling them to their clients.
Lay people’s experiences and opinions as they are expressed in digital media forums, with all the suffering, hope, despair, frustration, anger and joy that are often integral aspects of coping or living with a medical condition or surgical procedures, have become commercial properties for market exchange. They are not offered and nor do they receive financial compensation for providing their experiences. The value they derive is non-commercial, while the exchange value of the data they upload is accumulated by the for-profit companies that provide the platforms for patients to share their experiences or trawl the web to harvest the data and render it into a form that is valuable for commercial entities.
As I argue in the working paper, patients may benefit in many ways from the affective labour in which they engage as part of contributing to these websites. Research suggests that many patients appreciate the greater access to information about their conditions and the emotional support, opportunity to express themselves, feeling part of a community and greater sense of control over their illness that they may gain from their participation in such forums. They may further gain satisfaction from contributing to scientific research, the production of better understanding of their condition or the provision of facilities or improved healthcare that may benefit themselves or others with their condition.
The use value of the data produced by contributors is restricted by the limits imposed by the platform they are using. Indeed it can be extremely difficult for people to retrieve for their own purposes the data they upload to patient experience platforms, enter as part of their electronic medical records or that are generated as part of their participation in clinical trials. Contributors’ efforts to collate their own small data aggregates may be frustrated in the face of the interests of commercialised big data: hence the recent development of the Small Data website, designed to assist them to gain access to their data.
We know little about to what extent the people who contribute to these sites are aware of how their data are used by third parties, commercially or otherwise; how they feel about this use if they are aware of it; how they experience the sites as users; and to what extent they may wish to gain access to their own data for their own purposes. I argue, therefore, that patients’ opinions and illness narratives may be expressed in more diverse and accessible forums than ever before, but simultaneously they have become exploited in novel ways in the era of digital health.