Features

Talking Patient Data with Parliamentarians

Published on: 9th November 2016

By Grace Gottlieb, Senior Public Affairs and Policy Officer, MRC

This article was first published in the Autumn 2016 issue of MRC Network magazine.

In July the MRC joined a number of other organisations [including The Farr Institute] in Parliament to demonstrate how patient data is revolutionising healthcare at an event hosted by the All-Party Parliamentary Group on Medical Research. MRC Senior Public Affairs and Policy Officer Grace Gottlieb explains what the session was all about.

It’s hard to overestimate the benefits of studies using patient data – they have allowed us to spot disease trends in populations, understand the causes of disease and learn how to treat patients.

In 2005 we worked with a number of other organisations to set up the All-Party Parliamentary Group (APPG) on Medical Research to provide a forum for parliamentarians to discuss medical research. So scientists, research participants and representatives like me from the MRC and other research funders ventured into Westminster to talk to parliamentarians about how vital patient data is to research.

The timing for these conversations couldn’t have been better – the Caldicott Review had been published the week before and set out recommendations for balancing patient confidentiality with the benefits of sharing patient information. We’re also supporting an independent taskforce that was launched in response to the review to improve awareness of how data can be used within the NHS. Improving trust in how our information is handled is a key aspect of this.

The APPG event showcased studies that have harnessed the vast potential of patient data to transform healthcare. For example there were representatives from the National Survey of Health and Development which celebrated its 70th birthday this year and has used health data from over 5000 people to reveal how factors like socioeconomic status are linked to disease risk and well-being.

We were also talking about the UK Biobank: a huge project that has recruited 500,000 people to improve the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses. Researchers from the Farr Institute were also there to talk to Parliamentarians about how this UK-wide collaboration of 21 institutions analyses data to better understand the health of patients and populations.

The event was a great success, with 32 MPs and Peers attending, including former Life Sciences Minister George Freeman, interim Chair of the House of Commons Science and Technology Committee Tania Mathias, and members of this Committee, the House of Commons Health Committee and the House of Lords NHS Sustainability Committee. The next day we were delighted to see that, after researchers from the Farr Institute gave Jo Churchill MP a #DataSavesLives badge at the event, she wore the badge at Prime Minister’s Questions.

We hope the message resonated just as much with other parliamentarians, after meeting scientists and participants involved in patient data studies. In the future we plan to keep in touch with the attendees, to continue to engage them with the value of research using patient data to people across the country.

 


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