Patient data in medical research

medical research

Together with  Cancer Research UK we've set up a joint Patient Panel where representatives are helping to inform our policy work on the use of patient data – both in terms of healthcare, like online health records, and the use of data in medical research.

To share or not to share, that is the question - Kelvin Pitman, panel member, tells us why he got involved

"A few months ago I was invited by the BHF to serve on a Patient Data Panel jointly set up with Cancer Research UK (CRUK). That sounds a bit boring, you might say, but I was really excited. 

The NHS is rather unique as it has been going longer and is more universal than any other similar organisation worldwide. Just imagine if all the information (data) held by GPs and hospitals across the UK over the past 60 plus years could be loaded onto a giant computer. It would be of enormous benefit to clinicians and researchers trying to find the best combinations of drugs and treatments, for different groups of people varying in age, sex, ethnicity etc. across a wide range of medical conditions. A really powerful tool that could make a big difference to everyone.

Of course none of us want our medical histories stored in such a way that hackers or others not entitled to it, could access it. So, the big challenge is to make sure that it is very difficult for any part of this goldmine of data to be traced back to any specific individual. You might say, that’s easy, just strip out names and addresses, birth dates, NHS numbers etc. However, it may be useful for researchers to know if someone is a smoker, lives in a particular region, their age, sex, ethnicity and so on. So there needs to be a careful balancing act between having really useful information and an individual’s privacy.

A couple of years ago, the NHS attempted to pull this mass of data together, but it foundered as the benefits and data protection were not adequately explained. 

Now, the BHF and CRUK have got together to encourage the development of this massively useful database while ensuring that its value and safeguards are well understood by everyone. It is in support of this aim that a group of patients from the BHF and CRUK have been asked to contribute from a patient’s perspective. 

To date we have only met twice, but I have really enjoyed getting to know the team as well as starting to get my head around the complex issues involved. I am really looking forward to helping the BHF develop a strong case to encourage as many patients as possible to allow part of their medical records to be securely shared for the benefit of all."