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Sharing the wealth: The treasure hidden in patient information

14 Nov, 2012

With the launch of a public consultation on the proposals for reforms to the NHS Constitution, we outline why suggested measures to help make patient information available to health researchers will be doing us all a favour.

Imagine a world where the link between smoking and lung cancer is just a myth. Where we notice that smoking 20 a day leads to a chesty cough and less endurance during a football match, but where there’s no reason to conclude that a man stricken with lung cancer owes his ailment to a lifelong love of cigarettes.

This might sound like a strange scenario, given that the link between smoking and lung cancer is so well established today. Such a world existed in 1950, however, prior to the pioneering detective work of epidemiologists like Richard Doll, who drew on a wealth of information contained in patients’ health records to demonstrate that lighting up really will vastly increase the risk of lung cancer. Without their research, the health prospects of a lot of people would be going up in smoke today.

Research based on data contained in health records provides an invaluable tool for identifying the causes of chronic diseases that are products of exposure to lifestyle factors over many decades, such as coronary heart disease, cancers and Alzheimer’s disease. But it has many more uses too.

Health data about patients and the public allow experts to detect potential outbreaks of infectious diseases, in order to limit their impact. Similarly, individuals who are taking a newly introduced drug need to be monitored to ensure that they do not develop malign side-effects, and health records make it possible to follow up those who use these medications. Innovative new treatments for diseases cannot be tested in clinical trials until sufferers of specific diseases have been identified through records, then contacted and recruited. And the increasing use of electronic records which can be linked together allows ever more sophisticated studies to shed light on the causes of diseases by combining information from several sources on thousands or even millions of participants.

Treasure trove

Since the 1940s, the NHS has been recording information on patients’ health from birth to death. As a result, the UK is sitting on the world’s largest trove of data that could be used for research to improve the health and wellbeing of the public. However, perhaps typical of hidden treasure, realising the value of this stash to aid health research has been an arduous task to date.

The UK has a large framework of regulation in place that rightly protects the confidentiality of patients using the health service. Upholding patient confidentiality is an essential process, but the complex network of regulatory bodies and laws that address the accessing of patient information by researchers also puts the brakes on beneficial research that would help to save lives. Given that spending from the public purse has produced the vast amounts of data amassed in health records, the public deserves to reap as much benefit as possible from its investment in the health service.

Fortunately, change is afoot. As part of an overhaul of the NHS Constitution that is currently under consideration, suggested amendments will help to streamline the process by which health researchers can be approved for accessing patient data, while maintaining safeguards for patient confidentiality and an individual’s right to decide whether or not their information is used for research purposes.

On-screen questionnaire

In a recent letter to The Times, the Wellcome Trust – in partnership with the Association of Medical Research Charities, the British Heart Foundation, Cancer Research UK and the Academy of Medical Sciences – stated their support for the suggested amendments and focused on how existing safeguards to maintain patient confidentiality would be upheld. But how do you feel about changes to the NHS Constitution that will facilitate the use of patient data in health research?

Last week, the Department of Health launched a public consultation to address its proposals for strengthening the NHS Constitution. The proposed amendments mean the NHS would make three pledges to patients with respect to the use of their information in research:

  • To anonymise data collected on patients during the course of their treatment and use the data to support research and improve care for others.
  • Where patients are identifiable from data necessary for the conduct of specific research projects (such as a date of birth), the NHS will provide patients with the chance to decide whether or not to allow their information to be used in the research.
  • To inform patients of research studies in which they may be eligible to participate.

You can submit your views on the amended Constitution at any point until 28 January 2013.

So if you’re thinking of quitting smoking, perhaps as a New Year’s resolution, remember that we have researchers’ access to patient data to thank for giving you a great reason to do so. But there’s no need to wait until the New Year to contribute to the NHS Constitution discussion – we’ve teamed up with Mumsnet to provide a forum to explore the issues in more depth. It is now live, and we hope you’ll come and join in the conversation.

Dylan Williams

Dylan is currently on secondment with the Trust’s policy team from the Academy of Medical Sciences.

Image credits: Justine Desmond, Wellcome Images; Wellcome Library, Wellcome Images.

Updated 14 November 2012: The timing of the Mumsnet forum changed.

Updated 19 November 2012: The forum is now live.

4 Comments leave one →
  1. Claire permalink
    15 Nov, 2012 11:58 am

    If only science and research operated in a political vacuum. If only people could trust governments and (ever-decreasing) regulatory bodies. If only goalposts weren’t regularly moved. If only there wasn’t monetary value in information. If only there weren’t already cases of confidentiality being compromised. If only research virtue wasn’t regularly trumped by ambition and politics and financial gain. If only one could be confident that all implications of consent and all information about research conduct would be fully explained and that all patients would be competent to understand. If only information purely went to those people who wanted to do good for the sake of all humanity. Of course all of the above are impossible ideals in the ‘real world’. But it doesn’t stop a cautious person from having reservations about where this constitutional amendment might take us. Good may well come of this, I agree. But we need to be very, very careful and we need to be convinced that current – and future – safeguards will bear the weight of the responsibility. And the right to opt out – and be informed of that right – must be sacrosanct.

  2. Ann Brand permalink
    15 Nov, 2012 12:53 pm

    What a fluffy article. Very little consideration to how “while maintaining safeguards for patient confidentiality” will be achieved. Simply taking a name off a record will not render it anonymous; doctors often include lots of identifiable information in the notes section, including the patient’s name. “Given that spending from the public purse has produced the vast amounts of data amassed in health records…” Very personal information that people have given in confidence to help healthcare professionals provide care should not simply be regarded as “data amassed”. This is dehumanizing. And whereas respected research charities are mentioned in this article, there’s no mention of selling records to the pharmaceutical industry. Research charities already have access to health records under closely regulated ethical guidelines. The aim of the changes to the NHS constitution is to widen access to records to the pharmaceutical industry. The downside, which isn’t mentioned in this article, is that if people know that their information will end up out there in the ether (e.g. on a marketing manager’s hard drive), they simply won’t share it with healthcare professionals. This is dangerous. Rather than “doing us all a favour” sharing medical records without consent (which in reality is what is going to happen) is contravening all of our rights to privacy. Then again, the standards of confidentiality and privacy in the NHS are poor anyway, and most people don’t mind sharing records because they don’t believe there’s anything particularly personal on them. But don’t be too sure of that. Healthcare professionals can write whatever they like and it’s not always accurate. Once accurate or offensively inaccurate information is out there, it is no longer confidential.

  3. 16 Nov, 2012 4:08 pm

    The debate about how the data may be used will rumble on. What is not in doubt is the potentially fascinating historical resource the records provide. Dr David Tyrrell, speaking at the Wellcome Witness seminar on ‘Research In General Practice’ in 1997, drew attention to the advantages afforded by these patient records, which come down to us from general practice. He points to the 1911 National Insurance Act, which necessitated patients being registered with a doctor. As a result of this, to quote Dr Tyrrell:

    “We have a defined population, and if they change their doctor, their records should go with them. Finally, and perhaps most importantly, that general practice should have a gatekeeper role to the secondary services. The result of that is that the information collected by general practitioners can reflect not only what they observe themselves in their own practice, but the outcome of their patients’ care in the secondary and tertiary care sectors of the health service. These characteristics, of course, persisted in the 1946 National Health Service Act … Without these conditions we would have had great difficulty in establishing a proper epidemiological basis for combining valid observations from many practices to produce aggregated data. You only have to look at those countries that haven’t got these advantages to realize what an amazing difficulty they have in trying to evaluate information from the general practice base.”

  4. @The_Radiologist permalink
    19 Nov, 2012 2:27 pm

    This is a debate which is long-since overdue. I would welcome secure, confidential access to patient data.

    I think that it is important to think about all of the medical information that is generated for patients as they travel through various NHS services. Electronic records, paper notes and medial imaging data are all rich sources of information for researchers. Medical imaging in particular is a situation where the rules and laws governing information storage/transfer/usage are difficult to understand and open for interpretation. Simplification and clarity on the use of medical imaging in research would help patients, clinicians and researchers alike.

    But perhaps we could go further and think big? i could imaging a situation where every digital medical image (X-ray/MRI/CT scan) is stored on a shared NHS cloud. An anonymous NHS-wide library of medical imaging would be the largest archive on the planet and would instantly become the most important source of data for research in radiology, should one ever be created.

    We have an opportunity. Let’s not squander it.

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