There is increasing concern - some unfounded, some substantive - over plans by the UK Government to market bulk anonymised data to the private sector through entities such as the national Health and Social Care Information Centre (HSCIC), a 'safe haven' that will offer life sciences researchers "strictly controlled" access to data collected from hospitals and general practitioners.
From an Australian perspective (or that of my membership of the OECD Working Party on Health Information Infrastructure) there are several concerns.
One is the notion of consent regarding use of the data, with questions about the ease of opting out (the default is that information from patients will be held by HSCIC and potentially provided to for example pharmaceutical companies).
Another is the scope for deanonymisation in the world of big data, a scope that has been traditionally under-appreciated by data custodians in the public and private sectors.
A third concern is inept communication, with health administrators failing to simultaneously persuade people of benefits - which are potentially significant - and allay concerns.
That failure is fostering activism by MedConfidential, a civil society group that brings together Privacy International, Big Brother Watch, NO2ID and FIPR.
An editorial in Nature comments that -
The key, as always, is consent. The information at stake here is not genomic clues to future health risks — already the subject of fierce debate — but sensitive data on past and current medical conditions. What the government leaflet fails to highlight is the real threat to privacy and the possible consequences. Worse, the public-relations exercise carried out by the government to stress the programme’s benefits has if anything increased the backlash from privacy campaigners, who are now highlighting the risks and urging people not to participate. An unfortunate false choice has been established, between scientific progress on one side and protection of privacy on the other.
The government did not initially intend even to allow individuals to opt out of having their data centralized in this way, which would have flown in the face of the most basic principles of privacy and informed consent. The leaflet now states, “You have a choice”, but the government seems to have made it as difficult as possible for people to exercise that right. They must explicitly contact their local doctor to opt out — a requirement that seems a sure way to make certain that most won’t bother, and so will be opted in by default. UK medical charities, including the Wellcome Trust, have launched their own advertising campaign in support of care.data, which, although it validly highlights many of the research opportunities of such big data, also fails to mention sufficiently prominently that an opt-out option exists, and indeed seems intended to try to reduce the number of people who opt out.
Maximizing the number of people entering the programme is clearly a noble goal. But one cannot help but get the uncomfortable impression that, in their enthusiasm to amass these data, the authorities are using sleight of hand and paying lip service to the principles of informed consent. Inconvenient as it may be, and even if it has some negative effects on the utility of the database, the opt-out option to care.data should be prominently displayed, and facilitated.
