Talking patient data with parliamentarians
Today we’ll be joining a number of other organisations in Parliament to demonstrate how patient data is revolutionising healthcare at an event hosted by the All-Party Parliamentary Group on Medical Research. Grace Gottlieb, who’ll be there, explains what the session is 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 on Medical Research (APPG) to provide a forum for parliamentarians to discuss medical research. So today, scientists, research participants and representatives like me from the MRC and other research funders are venturing into Westminster to talk to parliamentarians about how vital patient data is to research.
The timing for these conversations couldn’t be better – last week the Caldicott Review set out recommendations for balancing patient confidentiality with the benefits of sharing patient information. We’re 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 and one that our head of clinical ethics and data, Dr Jon Fistein, discussed in last week’s blog.
The APPG event will showcase studies that have harnessed the vast potential of patient data to transform healthcare. For example, there will be 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’ll also be 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. Parliamentarians will also be able to hear from researchers at the Farr Institute on how this UK-wide collaboration of 21 institutions analyses data to better understand the health of patients and populations.
The event will give parliamentarians the chance to meet scientists involved in these studies and individuals who have taken part in them. We can’t wait to share these studies with parliamentarians and celebrate the value of research using patient data to people across the country.
The APPG on Medical Research was established in 2005 and is Chaired by Liz McInnes. It is supported by the MRC, the Academy of Medical Sciences, Arthritis Research UK, Cancer Research UK, Wellcome Trust and Association of Medical Research Charities (AMRC), which runs the group’s secretariat.