Patient data in medical research
A new leaflet for patients explains about the importance of their health records in research. This is a short guide for our members to explain why the leaflet was developed and how you can use it in your organisation.
What is the project and why has it happened?
Patient data in clinical research is a UK Clinical Research Collaboration (UKCRC) partners’ project. The aim was to produce clear information for patients and healthcare professionals about the benefits to science and society of allowing patients’ data to be used by researchers.
This data, contained in NHS patient records, is a rich resource for medical research. Patient data is essential for recruiting patients to clinical trials, research to understand disease, and developing new treatments.
The leaflet is published by the UKCRC, which includes the main UK research funding bodies, academia, the NHS, regulatory bodies, the healthcare industry and patients. The leaflet was put together by the Sub Group on Public Awareness of Research, with AMRC leading the project.
We have worked closely with the four regional NHS boards (England, Scotland, Wales and Northern Ireland) to ensure the leaflet is tailored for patients. The partners have also commissioned a company to collect feedback from users
What is patient data?
The NHS holds information on every aspect of a patient’s health, such as hospital admissions, blood test results and their history of sickness. These are recorded by healthcare professionals, including nurses, doctors, physiotherapists and occupational therapists and can be held in more than one place as well as on centralised systems.
Data can be used to identify suitable patients for participation in clinical trials or can be used directly for research; for example, correlating where people live with the incidence of lung cancer.
Patient data required by researchers may be identifiable or anonymised. Identifiable data contains details that would allow someone to identify the patients involved and anonymised data does not. Patients must give permission for their identifiable data to be used for research – except in some very special situations – but anonymised data may be used without their permission.
Who is the leaflet for?
The leaflet is for patients, but will also be useful for health professionals such as GPs and practice nurses who are the first point of contact for patients with questions.
What does the leaflet say?
The leaflet offers a quick introduction to health data, how data is used in research and what health research is. It also includes brief case studies to illustrate the role of data in research and the benefits it brings. It also answers the questions: 'why me?' 'why my data?' and 'what can I do?'
Can I have a copy?
The leaflet will be delivered to approximately 6,000 GP surgeries in England, Scotland, Wales and Northern Ireland on the 21 November 2011. Electronic versions can be downloaded from the box on the right, and it is also available on NHS choices' guide to clinical trials and research.
AMRC members are encouraged to display the leaflets on their websites, in their patient centres or at other points of patient contact.
If you would like to order copies of the leaflet (there will be a charge for this) to distribute to your patients networks, or if you have any further questions then please contact us.
21 November 2011