There has been much confusion and divisive opinion over the NHS campaign #datasaveslives, aimed at building support amongst NHS patients and the general public to give consent for sharing their personal medical data for research purposes. NHSx, the NHS group driving the campaign, explains why data sharing is important:
“Information collected by health and care organisations helps to improve individual care, speed up diagnosis, plan local services and research new treatments. Data saves lives. It also saves everybody time and NHS and care services money that can be put back into patient care”
What’s not clear to most people are the many types of patient data, much of which is shared already with patient consent. The latest initiative to share patient GP data, however, has met with considerable opposition. Many people have actively opted out of what they see as a “data grab”, and the initiative has been extended to later this year.
Over the last year, we have witnessed first-hand how patient data can be used in research and even in place of clinical trials to interrogate the safety and efficacy of new diagnostic methods and treatments for prostate cancer. Biobank, The HEAT Registry, Prostate Pioneer and Health Data Research are each contributing to advancing knowledge on prostate cancer through patient health data.
While the use of personal health data has catapulted into public awareness over the last year, it is not a new activity and indeed has underpinned significant advances in healthcare for many years. Some may be familiar with BioBank, which has been in existence since 2007, and has provided vital datasets to support a multitude of impactful projects, including many focused on prostate cancer.
Biobank is holding an event this month which we encourage you to attend if you are keen to better understand the use of patient GP data. It’s called “How GP Data helps UK BioBank improve Human Health, and you can register here
The Focal Therapy Clinic is involved with two data organisations which we’ve discussed in previous blogs here and here, both of which have had and continue to have a significant impact on advancement in prostate cancer diagnostic and treatment.
Prostate Pioneer is a European Network for Big Data in Prostate Cancer, consisting of 32 partners across 9 countries.
Established in 2018, its goal is to assemble, standardise and analyse high-quality datasets from diverse populations of prostate cancer patients across different stages of the disease to provide evidence-based data for clinicians and scientists in academia, industry and government. It aims to achieve this by 2023, by working through a detailed set of programmes and work packages.
The HEAT Registry is a database of patients who have had focal therapy, containing information on their diagnosis, treatment and recovery. It has supported studies over the last 18 months that are crucial to building the evidence base for focal therapy – no small feat with Covid19 restrictions and precedents based on randomised control trials.
An evaluation of functional outcomes for men having HIFU treatment for the second time is published here and a comparison of men who underwent focal therapy with men having had prostatectomy after eight years is here.
Linking these Multiple data sources and making them accessible to everyone is the aim of Health Data Research UK.
it has built one of the largest repository of prostate cancer data in the world at the University of Oxford. This collection of over 140,000 unique prostate cancer patients’ data and insights on the disease and its progression will be used to aid earlier diagnosis and more effective treatments.
The Focal Therapy Clinic is a strong advocate of patient choice, and we strive to provide our patients with information that is evidenced and considered so that they can make these choices responsibly and confidently. We believe in the value and importance of patient data, and seek to help our patients understand the provenance of datasets used in past and current research and the potential of their own personal data in future applications. When used responsibly, data really can save lives.
Are you concerned about the use of your personal medical data? We’d love to hear from you.