Jarvis's book 'public parts' [i]: The sanctity of clinical data, INFORMATION, knowledge ....
In New Scientist last week another book, a brief review caught my eye. This one concerns a topic of great sociological, clinical and political interest to me. To be clear this is not a review; consider it raised eyebrows at the book's arrival and some speculations. Here is the intro from New Scientist's website:
WHEN writer Jeff Jarvis decided to tell the world about his prostate cancer he didn't spare the gory details: he happily blogged about his "malfunctioning penis" after surgery, and the adult diaper he had to wear.
Too much information, some may say. Not for Jarvis. He is an outspoken advocate for living one's digital life in the open and his latest book, Public Parts, is one of the first to analyse the shift towards more transparency thanks to Facebook, Twitter and the other big names of this new digital age.
(Niall Firth, CultureLab, New Scientist)
For quite a while I've been wondering about the informational form of 'climate' change. The existence of the NHS's HealthSpace, Google Health, and Microsoft HealthVault had me watching for erosion of the public's attitudes towards clinical confidentiality. Jarvis refers to this as publicness. Like a coast line this particular form of erosion occurs on many levels, given the vagaries of starting conditions (the patient-doctor relationship, the medical establishment), geography, tides, weather and local policies. Would the temperatures change within health care itself - professional values, disciplinary outcomes, The Royal Colleges?
Even if HealthSpace et al. are provided on the basis of being secure, encrypted, meeting the local requirements of data protection and information governance...; is this tantamount to making confidentiality soluble AND throwing it into the water? How big a step is it to the public's posting their personal health information in public online arenas: open and closed? Suddenly the patient becomes the data entry administrator, if that information can be shared and accessed by the health establishment. From a business model and policy perspective this also saves money in an Ikea flat-pack-transport-and-assemble-it-yourself kind of way.
Jarvis's book is evidence, that demonstrates the ability of social media like Facebook, LinkedIn and Twitter to alter attitudes towards disclosure of personal data. Medical details are usually restricted to the medical consulting room and centrally held clinical record. Google Health is closing down though; it has failed to have the broad impact they hoped for (see Google's blogpost). I wonder if this is reflected upon in the text? With the NHS behind HealthSpace perhaps these three 'solutions' are far from equivalent examples?
If we take information as the concept around which this debate revolves with an individual, a person also at the center ('data subject') then several dimensions can be found. Usually, I am increasingly transparent to a greater degree from my work colleagues, friends, family to my partner. This is one of the many ways that relationships are defined and differentiated. Certain things are opaque to the public and commercial world at large, because they are considered private. Clinically, such a class of information is vested in a professional relationship. This does not mean I have signed a contract to only divulge my medical history to my doctor. Even there - a need to know assumption usually pertains.
As Firth notes it is good that Jarvis is stimulating a debate about what is privacy. How has the concept changed, since the 1950s, 1980s in the media (old and new) and in health care?
Apparently Jarvis makes an analogy with Gutenberg's original printing press and its social and political effects. There may be other subtle aspects though that any such revolution must either work around or overthrow. In the first instance though I consider - without reading the book I have to add - some of the main points which are illustrated below.
Although society has changed markedly in terms of technology and the communications it affords - the modes, tools, languages, access, networks, distribution; there is surely still a notion of what is personal and what might become social - (public)?
Technology, technological means and the arrival of social media does not itself constitute universal attitudinal change in health as Google have found (perhaps the pace of change in attitudes was not quick enough for Google Health so they moved on). Amid the hectic pace of life we should be pleased if some things - like public health disclosure - prove to be laggards in terms of change.
I'll expand on this soon with a few more axes - continua to flare.
Axes image original source from: https://den.dev/
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