The SAIL Databank Consumer Panel consists of a group of 16 members of the public, based at Population Data Science Swansea. They meet four to five times a year, providing advisory and consultation services from the perspective of service users, carers and the general public to users of SAIL and the Research Centres on issues in data research.
In this blog, published by ADR Wales, Public Engagement Officer at Population Data Science, Claire Newman, writes about the running and positive impact of the Consumer Panel in scrutinising approved research using anonymised data available in SAIL.
All research projects conducted at Population Data Science are designed to include the public and patients. We recognise the importance of providing a public voice and demonstrating the trustworthiness of our work. To support this, researchers who use the data held in the SAIL Databank (hereafter referred to as ‘SAIL’) have access to the use of the SAIL Databank Consumer Panel free of charge.
The Panel was originally assembled in 2011 and has continued to provide patient and public engagement to SAIL and associated researchers for over 10 years. The Panel includes people from diverse backgrounds who share an interest in data and how it can be used to help society and inform policies.
The Panel is comprised of members of the general Welsh public who currently or have previously lived in urban or rural Wales. The meetings are virtual but were held in person before the pandemic. Many of the researchers find it easier to attend virtually for an hour slot as they are not always based in Swansea.
Our meetings take place four or five times a year and last for five hours (including breaks). Meeting invitations are sent out six to nine months in advance advising researchers to email a request to present at one of the slots which are usually up to an hour in duration.
Researchers who are new to the Panel first join an introductory meeting to share their research and motivations for engaging with the Panel. Researchers are supported in how to make the experience a success, how to engage with the Panel (i.e. what questions they want to ask to gauge public opinion on their work) and for any further public engagement (i.e. activities beyond engaging with the Panel).
Meeting invitations are sent six- to eight- weeks ahead of each meeting, and an agenda is shared a week in advance, to give Panel members time to prepare, particularly if they are provided pre-reading materials. During this time, researchers fill out an expression of interest form a month ahead of their meeting, which includes an overview of their project and any questions they want to raise at the Panel meeting.
The researchers are emailed the week of the meeting to request them to send me a copy of their presentation to avoid any technical issues the day of the meeting; the Panel members are emailed the day before to remind them to attend.
The meetings are recorded to assist minute-taking and begin with introductions and addressing the agenda to review the previous meeting minutes to make sure the Panel members agree with them, any actions that need addressing, and are there any questions or comments relating to these. Researchers then present their content to the Panel; each presentation is followed by a discussion.
Once the meeting is finished, minutes are compiled void of personable information and are shared with Panel members up to ten days after the meeting. Panel members are also sent a meeting feedback form giving them the opportunity to say how it went and if there was any part of the meeting they didn’t understand, comments for the researchers or subsequent Panel meetings.
These notes are included and sent to the researchers. On some occasions, researchers are invited to send post-meeting feedback on their visit to the Panel meeting. This can help develop or improve meetings in the future.
All discussions and submitted feedback are confidential unless otherwise specified.
Both researchers and Panel members feel a mutual benefit of this model of working. Some feedback from researchers who have engaged with the Panel includes:
‘We had a useful discussion about ethics in administrative data research, with some really useful themes coming through about the need for the appropriate use of data in research. Some other interesting insights came across about accountability, the need for clear communication and the lack of public awareness about how data is used.’
‘That was a really great discussion – thank you to you and the Panel for some excellent points!’
‘It was great having the opportunity and time to speak to the Panel, which include members of the public, about our planned research and ensuring our aims are of interest to the public and will benefit our society. We received invaluable feedback which will support our SAIL application and we were able to discuss and mitigate any concerns on using patient data for our research outcomes.’
Some feedback from Panel members includes:
‘I enjoyed the AI (Artificial Intelligence) presentation because it did not include PPI (Public and Patient Involvement), and we always need a voice.’
‘Multimorbidity research is important, results can help practitioners in better decision making about medication, also help in long term cost reduction in NHS.’
‘Although it may take two or three years to work towards developing the use of AI in order to streamline, make more efficient, improve patient experience, the services offered by GP Practices in Wales…It is important to try, and it would be great if it is successful. A long way to go but exciting to learn about the process and journey.’
Engagement with the Panel has been recognized in several publications:
- Data Sharing and Linkage for the Public Good (Office for Statistics Regulation, 2023)
- Ministry of Justice: Better Outcomes for Linked Data guidance (2023)
- A study from the Networked Data Lab Wales (2022)
Preparation is key for the meeting to be a positive experience. Adequate preparation not only supports researchers but can maximise opportunities for Panel members to contribute and learn something new. This includes a pre-meeting discussion with researchers to give an overview of the Panel members, and the researchers the opportunity to cover their project and why they want to come to the Panel.
A good balance of words and visuals help the Panel’s engagement, and it’s important to consider they are a lay audience, therefore presentations should not be too technical and full of jargon.
The Panel and their perspectives are extremely important to the research being conducted by users of SAIL data as it brings the research to life and keeps it relevant for the general public.
Read the full Consumer Panel report here
Find out more about the Consumer Panel here