Local residents have shared their perspectives to support the development of the DataLoch service.
Exploring public perspectives
Prior to the full DataLoch service launch, the team commissioned Ipsos Scotland to undertake a public consultation of local residents. The aim was to inform DataLoch’s governance framework for data access requests. The first stage involved a survey, with the resultant report demonstrating general support for access by a range of organisations. Details of the survey and the report can be found in this separate news item.
To secure more nuanced input, the DataLoch team tasked Ipsos Scotland with conducting small, focussed discussion workshops with local residents to identify key principles and red lines for researchers seeking access to health data. These recommendations are informing the governance framework for DataLoch.
Expectations for trustworthiness and credibility
Firstly, the motivations of the researchers and their organisations must be transparent and focused on public good, such as seeking to improve treatments or advance learning about specific conditions. A goal of profit-making was generally accepted, but not if this was the sole purpose of the research access request. Many participants wished to see some flow of any potential profit back into NHS services.
Secondly, the identity of the organisation had significant influence, with the NHS and universities perceived to be more trustworthy. Pharmaceutical and large technology companies were specifically highlighted as having to work harder to justify their potential access to health data. The public saw a red line when it came to insurance company access to data, seeing a risk of these companies targeting premium cost increases and potentially reinforcing systematic inequalities.
Thirdly, the NHS and universities are known for having long-standing codes of conduct by which employees must abide. The public raised an expectation of equivalent arrangements for other organisations.
Finally, researchers must accept a set of terms and conditions to secure access, especially individuals from newer organisations that may not have a track record to demonstrate their credibility. The public also suggested valuable skills might be more commonly found in non-academic backgrounds, especially in software engineering and artificial intelligence.
Concerns about non-NHS and non-university access to health data
At times, participants expressed conflict between the idea of public good and the potential for organisations to make profit. Despite these concerns over profit-making, there was also acknowledgement that private-sector organisations could help advance health care innovations through their complementary expertise, scale of operation, and their financial resources. It was also recognised that the private- and third-sector organisation were already integral to the health and social care ecosystem.
Trusted Research Environments – which provide access to de-identified data for a specific period of time for specific approved researchers – provided some reassurance that privacy risks were minimised. However, there was still encouragement for additional protections – including terms and conditions imposed on researchers – that would reinforce the technical security measures.
The need for user accreditation standards
Local residents defined a number of principles to form the foundation for a general code of conduct. These principles included: clarity on the specific purposes of the proposed research; clear public benefit resulting from data access; agreement that data would not be used solely for profit-making; and articulating how the research would ultimately improve frontline health care.
These standards should be reinforced by an ethics panel involving medical professionals, other researchers, and members of the public to assess proposals from multiple angles.
Learning for the DataLoch team
This consultation process has confirmed several of the DataLoch team’s existing governance decisions, such as collaborating with our Public Reference Group to provide a public value assessment for each research application. There are some new elements to explore too, such as a specific code of conduct for all applicants and defining a monitoring and review process to confirm researchers have used the data for their originally specified purposes.
The workshops have also raised further questions that the DataLoch team will focus on within further consultations: exploring whether there is an acceptable balance of potential public value and profit-making; investigating perspectives around the role of Artificial Intelligence in health care research; and examining the track records of the individual researcher and their host organisation – which is more important and in what ways?
Full report
Download the full report:
(PDF, 1.3MB)
If you require this document in an alternative format, please contact DataLoch via dataloch@ed.ac.uk or 0131 658 5325.
Background note
This project is partly funded by UK Research and Innovation Grant Number MC_PC_21029 as part of Phase 1 of the DARE UK (Data and Analytics Research Environments UK) programme, delivered in partnership with Health Data Research UK (HDR UK) and ADR UK (Administrative Data Research UK).
To further support this work, a separate survey was also circulated. A resultant report is available elsewhere on our website.
