The value of effectively and safely linking consented data (that requiring active assent from those providing it, e.g. the donation of biological specimens) with routinely collected medical data for research was highlighted by the UK Health Data Research Alliance (The Alliance). It was acknowledged that researchers face many challenges when attempting to achieve this in practice, including inconsistent application procedures, long timelines for accessing datasets and difficulties articulating the benefits of using the data and meeting requirements for ensuring secure working practices. These challenges may result in missed opportunities for investigating key health and social care research questions and, by extension, for improving treatment options and the quality of care patients receive.
The UK Health Data Research Alliance (the Alliance) convened the third Improving Access to Linked Data for Research workshop on 27th April 2023 (10:00 – 11:30).
A workshop summary and notes will be shared shortly.
On 19th October 2022, The Alliance hosted the second workshop on ‘Improving access to linked data for research’, chaired by Meredith Leston (Nuffield Department of Primary Care Health Sciences, University of Oxford), following on from an informative session summarised below. Key stakeholders were brought together from the health data ecosystem to address several recommendations highlighted in the previous workshop. In particular, this session focused on the need to better understand and streamline the data access processes and data access agreements, as detailed in the objectives below.
Conclusions and Next Steps
This was the second of this workshop series on ‘Improving access to linked data for research’ where we discussed issues around difficulties accessing routinely collected and consented data and proposed opportunities for change. We discussed the importance of communicating the positive value of using this data and the need of being able to use data that participants would like us to use for research and innovation. We also explored the intricacies around inconsistent data access processes across the UK and received feedback on solutions proposed such as the ‘tube map’ and the TRE Legal toolkit.
As ethical issues and consent were important aspects highlighted by community discussions, we will now convene a third working session to discuss and understand more the type of consent and what researchers should consider when using previously consented data to link to routinely collected data
Following this third and final workshop, we aim to consolidate input in an opinion paper to be presented at one of the next Alliance Board meetings.
Outputs from this session can be viewed here
The agenda can be viewed here
On 13th July 2022, the UK Health Data Research Alliance convened a workshop chaired by Meredith Leston (Nuffield Department of Primary Care Health Sciences, University of Oxford) to discuss the challenges and opportunities that surround the use of linked data for health research. In particular, the group explored the issues that researchers and health professionals face when attempting to link consented health research data (that requiring active assent from those providing it, e.g. the donation of biological specimens) with routinely collected health data. The workshop included four presentations from various perspectives across this health data ecosystem to work towards the following objectives;
Conclusions:
The Q&A and discussion at this meeting highlighted three key areas of focus for future workshops:
Outputs from this session can be viewed here
The agenda can be viewed here
Future workshops will be used to build on ground covered during previous sessions and to consolidate all insights and concerns into a formal list of recommendations for health data regulators and governmental stakeholders to consider.
