Sharing the wealth: The treasure hidden in patient information
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.
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.
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 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.