Patient registries are an invaluable resource for furthering the understanding of rare diseases such as bleeding disorders, providing large, pooled datasets not achievable by other means of data collection. As well as supporting clinical care and research, registries must also be able to answer questions that are important to the wider bleeding disorders community. However, there are challenges associated with the need for secure access, exchange of health data, quality and interoperability, and data delivery.
As part of the EHC Think Tank Patient Registries Workstream, 17 stakeholders representing health care providers, patient groups, research and industry met in October 2021 to identify challenges to managing and utilising patient registries, from each of their stakeholder perspectives. This is a first step in a longer term process aiming to identify or co-create solutions that could improve access and interpretation of patient data. The challenges identified relate to five key categories which are interlinked in various ways: 1. The multiplicity of registries and datasets; 2. Data quality; 3. Data sharing; 4. Expanding the scope of registries; 5. The role of the patient in registries.
The heterogeneity in the way that registries are designed, funded and owned, the type of data collected, and the way data is collected are issues that must be addressed. Good, quality data is needed at all levels to ensure the provision and funding of effective care. Data quality will increase overall if it is possible to merge data from different registries. The value of patient participation in registries must also be acknowledged and built on to help ensure their quality, that they remain fit for purpose, and that data input is sustained over time.