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Private data - for the public good?

19 December 2011
By Sharmila Nebhrajani
Chief executive, Association of Medical Research Charities (AMRC)
Appeared in BioNews 638
Our medical records include some of the most personal and sensitive information about us. So it's understandable that two items in David Cameron's life sciences strategy caused considerable stir.

Firstly the Prime Minister confirmed he would be setting up the Clinical Practice Research Datalink, linking patients' GP and hospital records and providing secure access to anonymised patient data from throughout the NHS. These data would be made available both to non-commercial researchers and private corporations like pharmaceutical and biotechnology companies.

The Prime Minister also announced a consultation on the use of patient records, proposing that by default, researchers on approved projects would be able to use anonymised NHS patient data and that patients would also be presumed to be content to be approached for specific trials (the so-called 'consent to consent' issue). In both cases there would be an opt-out for patients who did not want their data used in this way.

This has sparked some controversy. The idea that an individual's data could, as a matter of course, be made available to researchers unless that person takes specific action to the contrary can make people uneasy. There is further concern, stoked by some pretty alarmist coverage, that private medical records might be 'sold' to industry for profit.

Let's start with the notion of data being made available to researchers of any stripe. The Association of Medical Research Charities (AMRC) represents 127 medical research charities who invest over one billion pounds in health research each year; that's over one third of all publicly funded health research in the UK. And this money comes directly from the public – from patients, their families and their carers. It really does represent the patient voice in research.

Our charities are clear – patient data is vital in setting effective research priorities, in understanding disease prevalence and in developing therapies and cures. From large scale projects exploring the link between overhead power cables and childhood leukaemias, to research on the efficacy of rehabilitation treatments for stroke survivors, access to patient data has helped researchers understand disease, tackle the issues most important to patients and improve outcomes.

Patient data is used routinely now – suitably anonymised in large observational studies and with explicit consent in clinical trials. Most patients want this; they know that most of the treatments we have today would not exist without research undertaken in earlier decades; they understand how important their data is and they want it used wisely, for the benefit of current patients and future generations.

In our recent Ipsos MORI poll (1), 80 percent of the public said they would consider allowing a researcher access to their anonymised medical records and 72 percent said they would like to be offered opportunities to be involved in research trials. Charities tell us they receive a growing number of requests from patients who want to take part in clinical trials but don't know how to go about it. The Prime Minister's proposed assumption that patients are content to be approached about research studies appears to be valid.

Of course this data must be treated with respect. This is personal data of the most confidential kind. The system that manages it must be safe and secure, inspiring the confidence of patients and researchers alike. We need to tackle that challenge assiduously – but it can be solved.

So – we support a change towards presumed consent for the use of patient data. But it needs the safeguards that patients understand what is in their records, who will use it and how, and that they have a way to opt out if they want to. AMRC, in conjunction with the UK Clinical Research Collaboration, has produced a leaflet for patients (2), 'Your Records Save Lives', which sets out how patient data is managed. It is a first, important step in making sure that presumed consent is informed consent.

Much has also been made of the fact that data will be available to the pharmaceutical industry. We should not fear this. The majority of life-saving drugs available today have been developed by these companies. Translating research from the lab into a product on the pharmacy shelf is a process that takes many years and significant amounts of money – on average some £600 million per drug (3). We simply could not do this without financial investment from the commercial sector.

Making data more easily available to all our research communities quickly and safely will speed clinical advance. The desire to generate profit need not be at odds with the drive to develop new therapies if medical researchers, charities, industry and the government work constructively together to facilitate research.

Industry is not our enemy here. The real enemy to vital life-saving and life-enhancing research is still the frustrating bureaucracy and administrative friction that besets research project and clinical trial approval.

1) Public support for research in the NHS
Ipsos |  9 June 2011
2) Patient data in medical research
AMRC |  21 November 2011
3) Groundbreaking scientific collaboration gives UK academia access to compounds to advance medical research
Medical Research Council |  5 December 2011
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