The data which is collected for managing our healthcare also has the potential to drive research forward. Analysis of the health data of many individuals, can enable researchers to look for patterns in the data and to develop new ways of diagnosing or treating health conditions. In the UK, our health data is not stored in a single database. Instead, it is scattered across the NHS and held in a number of different formats and databases, for example in the form of our hospital and GP records. This makes it difficult for researchers to gain a full picture of people’s health, and of the care and treatment they receive.
In November 2021 we began thinking about the ways in which the health data of patients diagnosed with prostate cancer could be better used to support advances in diagnosis, care and treatment. Our findings have led us to propose setting up a first-of-its kind prostate cancer registry. We see enormous potential in connecting clinical data with evidence gathered directly from those affected by prostate cancer. Crucially, our patient-led registry would deliver valuable insights that could support decisions about care and treatment, as well as connecting those who would like to take part in research studies to opportunities to participate.
In February 2022, we launched a pledge campaign, spearheaded by Stephen Fry, to show that enough individuals with prostate cancer would be willing to join the registry to make it a worthwhile undertaking. In a few short months we recorded around 2,500 pledges, quickly surpassing our initial goal of 1,000.
Over the course of 2022 PCR conducted a series of workshops and focus groups with key stakeholders, to identify challenges they faced in accessing data and recommendations for a future solution. In November 2022 we published the outcome of these consultations and our research in an ‘Unlocking Prostate Cancer Data’ report which you can download here.
If you would like to find out more about our plans to improve access to prostate cancer data please contact [email protected]