Guest post by Kyle Main, Policy Officer at the Association of Medical Research Charities (AMRC), on a recent AMRC workshop on patient data.

Turning up to a workshop about patient data is not ordinarily synonymous with Coronation Street but on this extremely rainy, overcast day in early June it seemed to be at the forefront of one attendee’s mind. A reference to harnessing the value of patient data in the peak time TV soap seems a distant thought but with a coordinated, sector-wide approach to public engagement around patient data who knows what’s possible?

Health and medical research charities in the UK fund a significant amount of research to bring benefit to patients. To help achieve these benefits, research relies on the use of patient data to better understand diseases and conditions. This understanding informs how new treatments can be developed and delivered more effectively.

AMRC members, medical research charities, fund a variety of research - from the investigation of very common conditions to rare diseases. As the collective voice for health and medical research charities in the UK, AMRC believes it is vital to demonstrate the power of health information for medical research. The use of patient data in medical research can transform the way we prevent, diagnose and treat disease as well as care for patients.

Last month, we held a workshop for our members on patient data. This blog sets out what was discussed and outputs of that workshop.

About AMRC

AMRC is a membership organisation of the leading medical and health charities funding research in the UK. We represent 140 medical research charities. In 2016, our members invested over £1.6 billion of research funding in the UK; funded the salaries of 17,000 researchers and recruited 170,000 patients to clinical trials funded by charities. In addition, medical research was the number one cause that the UK public chose to donate to in 2016.

Our patient data workshop

The aim of our patient data workshop was to identify the steps that medical research charities can take to engage and inform the general public and patients about uses of patient data.   

To open the workshop AMRC’s CEO, Aisling Burnand, outlined the unique position of medical research charities. Medical research charities were the biggest cause for donations last year and charities have well-developed links with patients. She highlighted work the sector is already undertaking to make the case for the responsible use of patient data, including AMRC’s booklet ‘A matter of life and death: how your health information can make a difference’.

Attendees then heard a compelling case for the improved use of patient data across the health service from an inspiring patient representative. She spoke powerfully about how better data linkage could have resulted in faster diagnosis and, ultimately, a better prognosis for her.

Lastly, Nicola Perrin, Head of Understanding Patient Data, underlined the importance of a common voice on data, and the charity sector being committed to sharing best practice for the benefit of patients.

How should medical research charities play their role?

There was invariable agreement that the sector has an important role to play in engaging the public around the use of patient data. This was found in the sector's strong connections with patients, with patient advocates, as well as clinicians and researchers. 

However, it was also strongly felt that the medical research charity sector cannot alone take responsibility for stimulating conversations about patient data. All sectors engaged in research and healthcare needs to play their part, this includes government, academia, healthcare professionals and others. It is also extremely positive, therefore, that Understanding Patient Data are striving to bridge the cross-sectoral gap on data.

Taking the small steps now and preparing for larger strides

The outcomes of the workshop were ideas of the simple steps that medical research charities can take to better engage patients and the public on patient data.

A few of the ideas discussed were: sharing more case studies to demonstrate the critical role that patient data plays in research and care; being more visible on social media on the topic of patient data; and appointing an internal patient data champion to encourage organisations to be more vocal with their networks and supporters about the importance of data; as well as developing a toolkit for charities to support their engagement in future. Going forward, AMRC will continue to hold a conversation about patient data with our members and the relevant stakeholders.

The importance of continued engagement 

One of the key steps going forward will be continued engagement with patients, the public and others on the importance of responsible patient data use for research and care.

There may be some way to go yet but perhaps it’s not inconceivable for a patient data inspired story line to help tip a BAFTA in Coronation Street’s favour.

Find out more

You can find out more about AMRC, our members and patient data work. Or contact Kyle using k.main@amrc.org.uk.