The UK CF Registry collects annual data on people with cystic fibrosis (CF) across the UK. All care centres participate in the Registry, and 99% of people with CF consent to their data being submitted. Information in the Registry spans over 20 years and covers demographic, treatment, and health outcomes data. The Registry, which is sponsored and hosted by the Cystic Fibrosis Trust, is used to support research, service improvement, commissioning of care, and policy decisions. It also provides vital drug-safety data to the European Medicines Agency, and each year we publish an Annual Report. The reports provide information about what cystic fibrosis looks like today, and how it is changing over time.
The Registry was delighted to be approached by HDR UK about joining the UK Health Data Research Alliance. Data science teams are acutely aware that there is (literally!) strength in numbers, and being part of a group of prestigious data controllers is a fantastic opportunity to share learning, and forge collaborations.
People with cystic fibrosis are remarkably research-motivated and data-savvy. They have proven time and again to enthusiastically participate in research, even when the results may not directly benefit them. This dedication to discovery, coupled with the dedication of clinical teams who diligently collect data that is 99% complete and 98% accurate, means that cystic fibrosis data is ideally placed to share experience and insights across the health data science sector. Completeness of coverage and depth of data also means that this complex and multifaceted condition presents opportunities to act as a microcosm of more populous disease areas.
We are looking forward to, along with other members of the Alliance, aggregating our collective experience of the barriers to breaking down data silos, and practical steps to overcome them. We also want to celebrate the multitude of successes in streamlining data collection, storing data with ingenuity, linking together populations through datasets and, most importantly, taking insights from database to bedside; tangibly improving the health of people affected by serious medical conditions.
Without the consent of people with cystic fibrosis to securely hold their data, and their trust that we will use it appropriately and to its maximum potential, the Registry would not exist. Willingness to permit data collection is not something that can be taken for granted, and we are looking forward to working with Alliance members and HDR UK to continue to build public trust in the collection and use of healthcare data, with solid outcomes rather than nebulous promises.
Increasingly we are seeing health data as being, rightfully, integral to the way clinical care is designed, delivered, and the needs of the public accurately anticipated. The formation of the Alliance is a promising step towards ensuring that decisions based on data are representative, transparent, open to challenge, and benefit the UK population with equality.