Join us to develop a joint statement on the use of patient data for research

Posted on August 8, 2012 by


Just last week, David Cameron named data as one of the five strengths of the UK in life sciences and plans for four new data research centres co-funded by charity and industry were launched. A consultation on the NHS constitution will be launched later this year to ask users of the NHS if they want researchers to be able to access their health records unless they expressly choose to opt out. And the Caldicott review is currently exploring how we balance the protection of patient information with the value of sharing it to help us improve patient care.

Charities bridge both sides of this balance, representing our patients and supporters and researchers.  We are already engaging in this debate and as a sector we need to ensure these voices are heard. To support this AMRC is developing a joint statement on the use of patient data for research to reflect the sector’s view and underpin our engagement with the ongoing debate. We’re holding a workshop on 19 September and we hope you can join us to shape this statement.


As a “cradle to grave” service, the NHS is a hugely valuable source of data for medical and health research. Health data has revealed causal links – like that between smoking and cancer – and allowed researchers to monitor the effects of medicines as they are prescribed to millions of people. Access to medical records also helps researchers find suitable candidates to take part in trials of new therapies.

A YouGov poll conducted recently by the British Heart Foundation found that more than three quarters (79%) of people would be happy for their doctor to share some level of medical information about them with health researchers to help develop new treatments. But they want to be confident that their data will be used responsibly.

There have been a few scary sounding headlines recently, like Millions of patients’ data to be sold off for research after Cameron announces radical plan to change NHS constitution, raising concerns about the threat to civil liberties and whether data may be abused

If the proposed change is made to the NHS constitution, this will allow anonymised patients’ data to be used for approved research unless a patient chooses to opt out. Approved research may include studies conducted by commercial investors such as pharmaceutical companies.

Patients and the public need information and clarity on what is planned and how their data will be protected to be able to make informed decisions about the balance they would like to see drawn.   Charities are in a great position to start a discussion with their supporters about how researchers access their health records. We can provide information and support debate to ensure patients understand more about the issues and have their say in the consultation. A key step in doing this will be developing a clear position statement, working with our supporters to develop this and ensure it reflects their views.

 Join us on 19th September

We are holding a free half-day workshop to shape this statement, discussing the key issues we need to take into account to reflect all our views. With invited speakers we will explore public attitudes to the use of personal data, how the regulatory system should balance protecting patient confidentiality and ensuring valuable research can go ahead, and discuss our position on the planned changes to the system.

This will be a useful opportunity for you to share and develop your own data policies as well as shape a sector position on the use of patient data for research.

For further information and to register, contact me on

Posted in: Policy