Unlocking the value of charity patient-centred registries By Kyle Main, Policy Officer, AMRC Published: 22 August 2018 The NHS has an unparalleled data source encompassing the diversity of the UK’s population. Yet, not all data is collected and accessible through the NHS and many organisations including charities collect their own datasets. AMRC charities fund a variety of different and important data registries, and in doing so often plug gaps where certain data is not currently accessible through national bodies such as NHS Digital and Public Health England. What is a registry? Registries are standardised collections of information about patients, who usually have the same disease. While clinical information reported by healthcare professionals through the NHS is a key element of many registries, charities often collect data directly from patients. Patient reported outcomes measures (PROMs) data cover information about the patient’s care and treatment through self-reporting. The immense power of data registries Last month, AMRC convened a workshop, with the support of NHS Digital and MRC, to discuss what charities are doing with registries and how to simplify the establishment and management of registries. David Barker, CEO of Crohn’s and Colitis UK spoke about his charity’s support for the Inflammatory Bowel Disease (IBD) Registry. He highlighted the transformational potential of the registry for patients and how it has already led to improvements for IBD patients, revealing information about IBD prevalence and helping improve services. AMRC members are using varied models to collect data. For example, the MS Registry, funded by the MS Society, is an online patient survey, allowing individuals (over 17,000 so far!) to self-report at regular intervals about their care. Not only can people with MS view their data but clinicians can also view both clinical and patient reported data to help improve their patients’ care. Reverse Rett fund a registry of Rett syndrome patients, which is the only accurate record of individuals with this rare disease in the UK, providing hope to people with the syndrome and their families and a gateway into research studies. Challenges and navigating an unclear landscape Addressing questions from charities considering establishing registries, Alex Bailey from the MRC Regulatory Support Centre described the key data protection considerations they must take when collecting data. The MRC Regulatory Support Centre, Health Research Authority and NHS Digital have produced useful guidance documents about data protection, however our members expressed interest in more tailored guidance and specialist support should they face difficulties. Many registries rely on the flow of data from national bodies. NHS Digital are often the first port of call although Healthcare Quality Improvement Partnership, Clinical Practice Research Databank, Public Health England and Northern Health Science Alliance are amongst the many other organisations collecting research data. There were calls from delegates to streamline data application processes and for help navigating them, so that data can be collected and linked to improve patient outcomes. The suggestion that a new role be created, possibly within NHS Digital, to support charities in navigating the data access process, avoiding delays and speeding up data access, was well-received. NHS Digital also revealed their plans to simplify data access, which include adding more datasets to their collections (including, in due course, Public Health England’s cancer registry) and developing a Data Service Platform for researchers to use NHS data in a secure, and more seamless, way. How is the data landscape changing? As part of the final session of the day Professor Tim Hubbard, the Executive Director of the London hub of Health Data Research UK (HDR UK) spoke about the changes taking place across the health care system. He highlighted the increased proliferation of data across the NHS and future widespread use of electronic health records. HDR UK are leading on the £37.5 million development of two to five Digital Innovation Hubs across the NHS in England, which will each cover regions of 3-5 million people. The Hubs will enable researchers to access datasets in real time and will potentially revolutionise data sharing across the NHS. HDR UK are working up their plans and during this initial phase, will be examining the best models of data sharing at local levels to inform Hub development. Given the complexities of the landscape and the forthcoming changes; Professor Hubbard emphasised the importance of ensuring that the valuable data collected by charities is compatible with new systems. Unlocking the unique data collected by charities Following the Life Sciences Industrial Strategy (LSIS) recommendation for the creation of linked national registries with involvement from the relevant charity, we are working to develop clear actions to support charity registries and to encourage simplification of the data landscape. The LSIS painted a vision of the life sciences sector in the UK, with a number of the report’s recommendations being taken forward by Government in sector deals. The first wave of the sector deal was taken forward at the end of last year (which included the Digital Innovation Hubs recommendation) and we anticipate a second wave later in 2018. There is a real opportunity as future sector deals are progressed to support charity registries and to ensure it is easier to unlock the unique data collected by charities, which will ultimately benefit patients. Charity funded registries are improving outcomes for patients and we will be working with the sector over the coming months to evidence the value of registries with the aim of shaping the recommendation further, with this workshop being a key part of our initial activities.