Public data, public health and social dis-ease.

This was first published in the August edition of Popular Science UK. Subscribe to read August’s piece on Obama proclaming #ScienceSaysSo.

STDs are still sometimes euphemistically dubbed “social diseases” because they are, quite simply, spread through social interaction. But the truth is that our health – and especially treating any lack of it – is always social in some way.

Immunisation is a good example, and it was interesting to see a recent shift in the public debate around MMR from largely couching discussion in terms of individual choice to a more socially connected blame on forces at a distance. Someone out there hadn’t paid their dues; now that kid over there was suffering. Blood is another good example, we pay into the blood “bank” when we are healthy so others might benefit, but hope we or a loved one will have blood when we need it. So are larger economic questions about the public funding of science education and research; even a privately funded healthcare system draws on such publicly funded expertise.

I mention this because we are entering a slightly new set of social relationships with our health. I don’t just mean the NHS reforms, though this is a huge change to our social contracts surrounding health too, and affects this one. I’m talking about data.

The NHS is a relentless collector of information. But it doesn’t always apply it as much as it could, especially linking it together, partly because of privacy concerns. Analysis of NHS patient records first revealed the dangers of thalidomide and helped track the impact of the smoking ban. It helps flag up problems and show where they don’t seem so readily present either.

The “big data” of the NHS could be a very powerful tool indeed, and we could link it up with pollution data, for example, or social care records to make it even more powerful

At an event held at the Wellcome Trust recent on this topic, acting director Ted Bianco stated discussion off by pulling his appendix out of his pocket and waving it at the audience. He was partly playfully making the point that something which had once be part of him had been removed by a team of medics, and he’d chosen to keep ownership of it. He had a bit of his (now replaced) hip to wave around at us too. But he also used these now redundant bits of his body to explain his gratitude that the medics treating him had learned from other bodies before getting their hands on him. In many ways, that’s the behind the idea of making more of NHS data: we want our medics to draw on the best information possible.

But there are reasons to be concerned too. Firstly, this knowledge doesn’t just have a social good, or multiple individual health ones. It has economic value too. Or at least, because of the nature of the way our society is currently organised, the ways in which we progress tend to be driven by turns of profit. A cynic might argue that the reason why we are pressing this policy through now is that such data will offer financial benefits, and that any to wellbeing are simply pleasant side effects.

Writing about the Clinical Practice Research Datalink project last summer, the Guardian’s Ian Sample said it was an “ambitious project [that] redefines what it means to be an NHS patient”, but the link in that passage of text sent readers to a press release from the Department of Business, Industry and Skills entitled “Government boost to UK life science industry”. That’s not to say that we can’t have both, or one might not be assisted by the other (the devil is always in the detail) but it’s interesting to note the different ways of framing the same news.

The Wellcome Trust recently undertook some interesting public attitudes research on the topic of health data, hoping to learn more about whether people see it in a different way to financial records, loyalty cards and the various traces of their lives they leave through social media.

The results suggest that people see health data as different, with a perceived benefit to human health (“unquestionable” benefit even). This sits, however, in a context where the public felt their trust in major institutions had been eroded: the banking crisis, MP’s expenses, phone hacking, police spies and so on. The researchers were not surprised to see cynicism towards a sense of “them” (the Government, corporations and press) with a significant fear of being a victim of fraud. And it’s worth noting that the research was conducted between late-April and mid-May this year, before the Guardian’s NSA files scandal broke in early June.

Most interesting to me were the differences within “the general public” here. There was little obvious difference between men and women, some on age (young people seemed more accepting of data collection and use) but most striking was that the so-called “C2Des” (lower middle class and working class) felt less powerful when it came to dealing with problematic consequences of data sharing (e.g. arguing their case on identity theft, fighting unfair use of data by employers). Cuts to legal aid weren’t mentioned, but I’d be interested to know more about how each part of the funding cuts impacts on people’s attitudes.

The research also suggested concern over the future ownership of health services in the UK as the government seeks to reduce spending. The public might trust the NHS now, but are weary about committing such a sense of trust for the future. There were strong concerns that personal health data might get into the “wrong hands” outside the NHS, and should be heavily protected from employers, advertisers, insurance providers and even drug manufacturers (which is interesting if we see data as potentially useful for drug development). They were also concerned that with more funding cuts the NHS might cut corners, or be more likely to use data against patients to withhold treatment. That said, although a couple of anecdotal data breaches within the NHS were mentioned, faith in the NHS itself seemed reasonably strong.

So, scratch the surface of worries about the use of public health data, and we see a range of social issues. There is also, arguably, some evidence of a lack of understanding over medical science (both its findings and how it works) and the nature of linked data, which we might see as a problem to be addressed by our education system. But these concerns are not simply a knowledge deficit on the part of the public – they show the precariousness many feel with respect to the state and other institutions, and concerns over whether it’s a balanced social contract they are being invited to be part of.

If we want people to give parts of themselves into the national endeavor of our public health – be it via our records, our organs or our blood – we have to ensure they feel like a supported and secure member of the national community at large. I’m not sure we’re there yet.

One thought on “Public data, public health and social dis-ease.

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