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Home » Information Technology » Should you give data altruistically, like you donate blood?

Should you give data altruistically, like you donate blood?



blood donation

“Alongside what we have already done with the mandatory work programme and our tougher sanctions regime, this marks the end of the something-for-nothing culture,” Duncan Smith said in a conference speech for the Conservative Party last year.

The “something for nothing” meme, reinforced by the concept that “there is no such thing as society” (which Thatcher supporters vigorously claim now was ‘misunderstood’), remains a potent policy narrative.

The anguish which NHS England has experienced may be due to a fundamental problem with trust, as for example demonstrated elsewhere in reaction to GCHQ or NSA. But it could well be due to the “something for nothing” meme coming back to haunt the Government, which narked off  public health specialists as the “opt out” has become unhelpfully enmeshed with concerns about commercial profiteering from health data.

“The Blood Donor” is a famous episode from the comedy series “Hancock”, the final BBC series featuring British comedian Tony Hancock. First transmitted on 23 June 1961, Anthony Hancock arrives at his local hospital to give blood. “It was either that or join the Young Conservatives”, he tells the nurse, before getting into an argument with her about whether British blood is superior to other types.

The issue of consent has predictably come to the fore, and it is generally felt that the communications strategy of NHS England over caredata went very badly wrong.

In an almost parallel universe, nothing to do with blood donations, it turns out that Labour is looking at bringing in a US-style system of allowing voters to register on election day amid growing fears that millions of people are about to drop off the official register in a “disaster for democracy”.

In a radical move, Labour is considering allowing same-day registration, which is credited with boosting turn-out from around 59% to 71% in some American states, according to the Demos think-tank. But the point is: mass paperwork involving the population at large is possible.

But now the issue has also become “there is no such thing as altruism”.

The Coalition announced in September 2013 that it had sold Plasma Resources UK to Bain Capital, the private equity firm. Plasma Resources UK (PRUK) turns plasma, the fluid in blood that holds white and red cellsin suspension, into life-saving treatments for immune deficiencies, neurological diseases and haemophilia.

The deal was hugely controversial, beyond typical disagreements over privatisation of national assets, because blood transfusions in the UK are voluntary; if donors think that someone is going to make a profit from their donation, they may well not give blood at all.

Richard M. Titmuss was a professor of social administration at the London School of Economics form 1950 until his death in 1973. He had an international reputation as an uncompromising analyst of contemporary social policy and as an expert on the welfare state.

Richard M. Titmuss’s “The Gift Relationship” (recently edited by Ann Oakley and John Ashton) has long been acknowledged as one of the classic texts on social policy.

A seemingly straightforward comparative study of blood donating in the United States and Britain, the book elegantly raises profound economic, political, and philosophical questions. Titmuss contrasts the British system of reliance on voluntary donors to the American one in which the blood supply is largely in the hands of for-profit enterprises and shows how a nonmarket system based on altruism is more effective than one that treats human blood as another commodity.

His concerns focused especially on issues of social justice. The book was influential and, indeed, resulted in legislation in the United States to regulate the private market in blood.

But shouldn’t you simply donate data ‘for the public good’, in the same way you can choose to donate blood?

The start of a new data sharing scheme involving the pseudonymised medical records of those who do not opt out will be postponed to give patients more time to learn about its benefits and safeguards, NHS England has announced.

Part of the semantics of the legal data involves whether a discussion of the giving of data is ultimately separable from the discussion of the purposes for which these data are ultimately applied.

HSCIC, Health Statistics Collaboration with Insurance Companies, reported on its insurance collaboration intentions last August. Section 2.3.1 of its Information Governance Assessment Addendum stated their intentions very clearly, as Roy Lilley earlier pointed out.

“There is no legal requirement to differentiate between the release of data to NHS commissioners and any other potential data recipient. In the eyes of the law, a government department, a university researcher, a pharmaceutical company, or an insurance company is as entitled to request and receive de-identified data for limited access as a clinical commissioning group, as long as the risk that a person will be re- identified from the data is very low or negligible.”

“Furthermore, all such organisations can make good use of the data. Access to such data can stimulate ground-breaking research, generate employment in the nation’s biotechnology industry, and enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its customers.”

The Centre for the Study of Incentives in Health in London is a cluster of academics  looking at the pros and cons of whether incentives can influence behaviour.

The issue of paying individuals to change their behaviours in health-enhancing ways, for example by encouraging them to quit smoking or take regular exercise, is a highly topical policy issue, in the UK and internationally. Yet personal financial incentives are potentially riddled with legal ethical issues, with concerns regarding their precise effectiveness, and with further concerns that they may have unintended consequences.

Paying people to undertake particular actions may crowd out their intrinsic motivations for wanting to do those actions, as demonstrated by Richard Titmuss’ classic work on blood donations almost forty years ago

Arguably, a final nail in the coffin came from a report by Randeep Ramesh that drug and insurance companies might be able to, from later this year, buy information on patients – including mental health conditions and diseases such as cancer, as well as smoking and drinking habits – once a single English database of medical data has been created.

However, advocates argued that sharing data will make medical advances easier and ultimately save lives because it will allow researchers to investigate drug side effects or the performance of hospital surgical units by tracking the impact on patients.

Possibly, now is an opportune time to revisit Richard Titmuss’ thesis.

One can only speculate what he would have made of the current furore over ‘caredata’. I suspect though he would care.

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