Blog: Ensuring a public voice in data research
Discover some of the recent topics covered by the panel and why it is vital to our work in this blog by Katie Oldfield, Public Engagement Manager.
Scotland Talks Data: A public panel on the use of data for research
Research Data Scotland (RDS) jointly runs a public panel with colleagues at the Scottish Centre for Administrative Data Research (SCADR).
What is the public panel?
Established in 2019 by the Scottish Centre for Administrative Data Research (SCADR), the public panel on data helps to inform research and the use of administrative data in Scotland. Since 2023, the public panel has been jointly hosted by SCADR and Research Data Scotland (RDS) to allow it to grow in membership and enhance the different activities the panel can undertake.
The public panel is co-led by Harriet Baird, Knowledge and Impact Manager at ADR Scotland, and Katie Oldfield, Public Engagement Manager at Research Data Scotland. Since becoming jointly run in 2023, the panel size has increased to accommodate up to 20 people to improve representation of the people of Scotland. The panel consists of members of the public from across Scotland from a variety of different backgrounds and lived experience of a range of issues covered in our research.
Our panel are involved in:
- Discussing different research proposals
- Advising on issues including around public trust and acceptability
- Helping us to communicate our work in a clear and accessible manner
- Informing further public engagement and our approach
What does the panel discuss?
The partnership between SCADR and RDS means that panel topics cover all aspects of the data journey. From what type of data should be available for research, to how it should be processed to how researchers communicate their work.
If you have any questions about the topics covered by the panel or would like to find out more information on the discussions please contact scotlandtalksdata@researchdata.scot
The panel meets five times a year. The topics covered since November 2023 include:
Scottish Historic Population Platform (SHiPP) – University of Edinburgh
Researchers presented SHiPP, which aims to create a database using Scottish civil registration certificates between 1855 and 1973, building on the Digitising Scotland project. The panel felt this was an interesting research resource with great potential value. The panel provided insight on any potential concerns that might need to be addressed and gave suggestions on ways to improve communication of the project to help bring it to life.
Private sector access to public data – Research Data Scotland
Research Data Scotland presented an early policy and associated public engagement plans to the panel about private sector access to public data. Opinions were sought on the policy, models by which the private sector may access public data, and the topics planned to be discussed at public engagement workshops. The panel provided suggestions to improve policy wording, presentation of the models, and emphasised the need for panel involvement in further development of the policy and engagement plans.
SCANDAN – University of Edinburgh
Researchers presented a project called SCANDAN, which aims to create smart computer programs to predict dementia. The panel were invited to provide their feedback on what they thought about the project, how the NHS should benefit if the tool was used, and whether they would support the project working with the private sector. SCANDAN is a University of Edinburgh led project delivered in collaboration with University of Dundee.
Brain Health Data Pilot – University of Edinburgh
This pilot aims to link NHS brain scans, hospital admissions and medicines data, to create a standing ‘dataset’. Currently, researchers have to create a new set of information each time they want to study a set of brain scans, then they must delete it and can only keep the manuscript. The panel fed back on whether they supported the concept of a new standing ‘dataset’ and the potential for international access. They also reviewed a short supporting animation. This project is a collaboration between the University of Edinburgh and Public Health Scotland and is managed by Health Data Research (HDR) UK.
Household living arrangements and Covid-19 among disabled people – SCADR
This research looks to understand how household living arrangements affect the transmission of Covid-19 among people with intellectual and physical disabilities. The panel were invited to provide feedback on any benefits and concerns they had. They were also asked who they felt the project should engage with, how results should be shared, and how they felt about a long-term research programme and data holding in this area.
Review of Animations – Research Data Scotland
Research Data Scotland was awarded funding to create animations about data linkage, TREs and synthetic data. Some members of the panel were involved at an earlier script writing stage and the first version of the animations were be shown to the whole panel for feedback. The panel provided insight on phrasing, pace and suggested changes to the visuals.
Mental Health and Policing – SCADR
Researchers presented on their research which aims to better understand the population who come into contact with the police while in mental health distress as well as their pattern and interaction (or lack of) with healthcare services. This research could help inform effective interventions to prevent or reduce the policing of mental ill health. The panel provided guidance on how to communicate this project and suggestions for public involvement in the research.
Data Access Approvals – Research Data Scotland
Research Data Scotland presented an early version of plans to transform the data access approvals process. Discussions with the panel included how datasets are prioritised, who can access the data, how data is categorised as well as what we have learnt from the pandemic. This is a long-term project which will involve the panel through its journey.
What impact does the panel have?
Over the past few years, panel participants have helped researchers and partners better understand public viewpoints on the use of administrative data for research.
One of the topics recently covered by the panel was on Synthetic Data. A new copy of a dataset that is generated at random but made to follow the structure and some of the patterns of the original data set. Each piece of information in the data set is meant to be plausible, but it is chosen randomly from the range of possible values. Their feedback was included in ADR UK’s position statement and has influenced the direction of future work on synthetic data, including how it is accessed by researchers, and started further investigation on how to avoid bias.
In another session, the panel have commented on an infographic about how properties are identified in datasets. This feedback was incorporated into the final design and will help researchers communicate their work more broadly with the public.
As the joint panel’s membership grows, participants will also help to illuminate how members of the public view different aspects of data usage for research. Additionally, panel participants will help RDS, SCADR and our partners understand how to best communicate what we do to a wider audience.
Professor Roger Halliday, Interim CEO of Research Data Scotland, said:
“We are committed to engaging with the public. Working with SCADR to co-host their existing public panel is a positive move to ensure transparency and help researchers, policymakers and analysts. This will mean we continue to listen and understand how people wish their data to be used, help them see the benefits from research and the robust measures in place to keep data safe.”
Professor Chris Dibben, Co-Director of ADR Scotland, commented:
“We are proud of the work we have led through our public panel who provide a critical voice in shaping what we do. Joining together with RDS will help make it more sustainable and increase opportunities to influence data research in Scotland. I look forward to the exciting next chapter.”
One of our former panel members, Stefano, shared his thoughts on being part of the public panel:
“As a member of the public panel, it is a real privilege and responsibility to have the opportunity to help inform research and the use of administrative data in Scotland. It really does open one’s eyes up to the amount of data out there, and how powerful it can be in developing and providing the critical evidence in support of significant research for the public good. It’s also fun, sharing and exchanging ideas, experiences and learning on the public panel.”
How can I get involved?
In order to recruit a diverse range of people from across Scotland, the panel was recruited via a postcode lottery through an organisation called Sortition.
To keep up to date with future opportunities to be involved register for our newsletter and follow Research Data Scotland on X (Twitter) and LinkedIn.
Get in touch
Get in touch with the Scotland Talks Data public panel team by emailing scotlandtalksdata@researchdata.scot
Recent updates:
Blog: Developing and re-shaping our public panel
Harriet Baird, Engagement Lead for SCADR, discusses managing and developing the public panel and how to improve representation.
RDS joins forces with SCADR to co-host existing public panel on data
Read the news story announcing our collaboration with SCADR to co-host the public panel.
Subscribe to our updates
To stay updated with Research Data Scotland, subscribe to our monthly newsletter and follow us on X (Twitter) and LinkedIn.
