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.  

  1. To identify opportunities for unlocking the potential linkages of consented and routinely collected health data. 
  2. To map data access processes and identify areas for streamlining. 
  3. To understand the landscape surrounding data access agreements.

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

Meeting outputs:

Workshop Summary Document
pdf - 208 KB
CAG and the Common Law
pdf - 262 KB
Mapping Action Force: Single map of all ethics and governance approvals needed to link data
pdf - 888 KB
TRE/SDE Legal Toolkit
pdf - 470 KB

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; 

 

  1. Identify opportunities for unlocking the value of broad linkages between consented and routinely collected health data for the public health and discuss key roadblocks to achieving them
  2. Explore collaborations under this remit across Alliance members and partner organisations 
  3. Develop recommendations to drive improvements in the linking of consented and routinely collected health data 

 

Conclusions: 

 The Q&A and discussion at this meeting highlighted three key areas of focus for future workshops: 

  • It is vital to communicate the value of using linked data for research to the public in an accessible way; success stories should be widely promoted and security arrangements including Trusted Research Environments must be demystified.  
  • The complexities that surround the data sharing agreements required to execute this work can generate suspicion amongst the clinicians who guard routine medical data and create undue pressures in their already busy working lives. This means these documents often never get signed or executed. There is therefore a clear need to streamline and simplify these legal processes and provide wraparound support or guiding documents to navigate this process.   
  • More must be done to understand the unique complexities that surround different types of consent; consent itself may not be the appropriate framework for executing these linkages given issues around how broadly initial consent can be stretched, whether informed consent has been obtained and when ensuring those who can’t give informed consent still benefit from linkage work. Currently, different datasets adhere to different burdens of proof in terms of consent; consistency must be achieved to improve the interoperability of health data.  

Outputs from this session can be viewed here

The agenda can be viewed here

Meeting outputs:

Linking Data for research Workshop Summary Document
pdf - 231 KB
The UK Longitudinal Linkage Collaboration (UK LLC)Integrating consented and non-consented data for longitudinal population studies.
pdf - 4 MB
Clinical Informatics and Health Outcomes Research GroupThe Nuffield Department of Primary Care Health Sciences at the University of Oxford: Opportunities and Challenges Associated with Diverse Health Data Linkages: Perspectives of those Working within a Trusted Research Environment
pdf - 1 MB

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.