Use of patient data in medical research

medical research It's crucial researchers have access to health data to help them make new breakthroughs as it can help identify risk factors, enable early diagnosis and find new or improved treatments. It's a central part of our research but there are challenges too.

Patient data isn’t just important for heart and circulatory disease – medical research as a whole relies on it. Therefore, we have set up a joint panel of patients with Cancer Research UK to input into our policy work on patient data – Kelvin Pitman, patient panel member, tells us why he got involved when the panel was first set up.

The panel input into a range of work for both charities

Helping shape our policy positions

Discussions around the National Data Guardian Consultation have made our responses more considered and meaningful with the Department of Health specifically asking to have more detailed feedback from the panel over the phone and in our consultation responses.

With the official Department of Health Consultation document quoting our responses, it’s evident the patient panel has made a significant impact into this consultation.

Bob McNabb, a member of the panel, tells us more about the role the panel played in the National Data Guardian Consultation

Media messaging

The panel have helped develop standard lines on patient data that can be included in any press stories resulting from research that has used patient data. Given there is a huge range of public opinion about patient data and communicating about this important area can be tricky, this is very important.

Wider engagement strategies

The panel helped shape the thinking of the ‘Big Data Conference’ team and when they later attended the conference they brought a different perspective – the conference team felt that the panel’s presence changed the feel of the conference in a hugely positive way

The future of the panel

This panel was initially set up in December 2015 as a one-year pilot. After a hugely successful pilot year where they have made a significant impact, we have now recruited another two patients (from BHF) to help us continue this work.

Jasmine Hodge – Lake, one of the latest people to join the panel, tells us why she joined and shares her thoughts on her first meeting