Information is power, or so they say. Information is certainly powerful, especially in medical research; and so the UK Clinical Research Collaboration, of which AMRC is a member, today published a leaflet aimed at patients to explain the potential usefulness of personal health data for medical research and to encourage them to allow researchers access to theirs.
What is personal health data and why is it useful?
From immunisations received to number of hospital admissions, everything to do with your health is held somewhere, or more likely, in many places. It is collected by occupational therapists, practise nurses, surgeons and physiotherapists – basically anyone who cares for your health.
The UK is the only country in the world where data has been recorded, since the 1940s, for every person registered with the health service – from birth to death. This means that there is a huge amount of data that researchers can learn from to help save lives.
It’s therefore really important that patients are aware of how useful their data is, why it may be used for research and how this is done safely and securely so they can have confidence in the system. By answering these questions it is hoped that patients can make an informed decision on allowing researchers to access their data.
Importantly, there are two forms that are of concern to regulators: identifiable – information from which it’s possible to identify the person – and anonymised – information that cannot be traced back to the patient. The leaflet explains the difference and also how patients’ private information is kept safe. The Data Protection Act 1998 and the role of ethics committees are explained to reassure patients that their data is used responsibly.
It also explains the many ways in which data can be used. Medical records help to identify candidates for clinical trials or other types of research requiring people with certain conditions or case histories, this would use identifiable data. Anonymised data is also valuable if someone is looking for “cause and effect” links; for example in 2005 researcher s used anonymised data to conduct a study looking at the occurrence of leukaemia in children living near electricity pylons which is helping us explore/understand whether electromagnetic radiation from power lines plays any role in the development of cancer – at present no conclusive link has been found.
What happens to the leaflet now?
On 21st November the leaflets will be delivered to approximately 6,000 GP practises in England, Scotland, Wales and Northern Ireland. It’s for patients but may also be helpful for health professionals such as GPs and practice nurses who are the first point of contact for patients with questions about how their data might be used. The distribution company is also going to gather feedback from users on the leaflet.
It would be great if AMRC member charities could make the leaflet available on their website and even order some copies (there is a charge for this) to distribute to their patients networks. Feel free to contact us if you have any other questions or if you’re like to order some leaflets for your organisation.