We established a Consumer Panel in 2011 to provide a public voice and gauge social acceptability on our work. A core function of Population Data Science it also provides public views on the work of associated initiatives. The Consumer Panel is comprised of around a dozen members of the Welsh general public. Its role includes
- Discussing proposals for research and the implications of findings.
- Providing views on data protection issues
- Reviewing information designed for a lay audience
- Offering guidance on how to recruit people to study steering groups
- Advising on how best to engage with the wider public
- Acting as advocates for data linkage research
“I feel privileged being part of the SAIL Consumer Panel. It gave me the opportunity to know the SAIL databank in depth and be part of research programs…SAIL Databank is the pioneering organization in the field of Research and data linkage. The information that is collected is used by the researchers intensively to develop different data models. The data linkage visualization created by the SAIL team is incredible, the anonymity of the data sets is maintained to high standards…The information collected from different sources post pandemic covid- 19 will be the base for different future Research Programs. The outcomes are going to change the practises and create a new vision of the future health issues.”Consumer Panel member
“This data holds a font of very valuable information about the state of the nation. Data can be accessed by authorised analysts to research many different aspects of patient diseases. It can then identify the benefits to patients and change the way health is targeted.”Consumer Panel member
“Because the data are anonymised, preventing individuals’ data being identified, I have faith in the system. There are safeguards in place so that researchers only have access to what is required for their piece of research and there is a rigorous evaluation process before applications to use the databank are approved.”Consumer Panel member
In addition to being members of the Consumer Panel, some members are also part of the independent Information Governance Review Panel (IGRP) which reviews all proposals to use our Trusted Research Environment, SAIL Databank, for research. They represent the public voice on data use alongside practitioners and professionals from the Welsh Government, the British Medical Association, Public Health Wales, the Research Ethics Service, Digital Health and Care Wales and Swansea Bay University Health Board. This membership ensures all implications and responsibilities are considered in the review process.
The Consumer Panel in action
4-5 times a year, the Consumer Panel based at Population Data Science Swansea meet to act as an advisory and consultative panel to SAIL and the Centres on issues in research from the perspective of service users, carers and the general public.
Author: Claire Newman, Public Engagement Officer, Population Data Science Research at Swansea University.
Who carried out this project: Claire Newman and Lynsey Cross former Public Engagement Officer for Population Data Science at Swansea University.
The ‘why’: All research projects conducted at Population Data Science are designed to work with the public and patients, as we recognise the importance of providing a public voice and measure social acceptance to our work. We have been entrusted to best manage and utilise health and administrative population data and understand the responsibilities this presents as we endeavor towards the delivery of data use. Researchers that use the data held in SAIL databank have access to the use of the group for free.
The ‘who’: The Consumer Panel was originally assembled in 2011 and has continued to provide a public and public engagement to SAIL and associated researchers for over 10 years. The Panel is comprised of around 16 members from diverse backgrounds and all share an interest in data and how it can be used to help society and inform policies.
The ‘where’: The Consumer Panel is comprised of the general Welsh public who currently or have previously lived in urban or rural Wales, Originally the meetings were conducted in person at Swansea University but moved to virtual during the pandemic. We have continued this as we recruited new members during Covid who would find it difficult to travel if meetings resumed face to face. Also many of the researchers find it easier to attend virtually for an hour meeting as they are not always based in Swansea.
Meeting Preparation: Our meetings take place on the last Wednesday of January, April, June and September between 10am and 3pm. The dates for the meetings are normally sent out 6 to 12 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.
The researchers email to enquire about attending the next available meeting and if they are new to the Panel, an introductory meeting is arranged to share information about the members, the meetings, discuss the research and why they want to present to the Panel.
I studied Population Health and Medical Science at Swansea University. I am so happy to call Swansea University my alma mater because of all the experiences, memories and life-long friendships I created. Throughout my studies, my perceptions and understanding of health and healthcare were challenged, reformed and enriched. Here, I was given the opportunity to explore and analyse health and its determinants at every level – from “Particle, to Person to Population”.
The knowledge I gained always felt relevant to the world and the challenges that people and healthcare systems face. However, it was my first lecture on population data studies that really inspired me to want to learn and see how experts and researchers in the field put the things I was learning on paper into practice! During this lecture I was introduced to the Secure Anonymised Information Linkage (SAIL) Databank and the research they were conducting – this was one of the first times I got a real and practical sense of why the theory I was learning was important outside the walls of my lecture hall. I was amazed at the cutting-edge population health data studies that were taking place right at my doorstep, and in the heart of our city, and I just knew I wanted to be a part of it. That is what inspired me to become a member of the SAIL Consumer Panel, and I am all the better for it.
Through my experience on the panel, I have been privileged to play my small part in several different research projects ranging across many health and social care areas. I gained real-world experience alongside much of the theory I was learning throughout my studies and developed my communication, analysis and teamwork skills. I think a lesson that will always stay with me is how SAIL always put people and their communities at the heart of their work- as well as the humility and empathy with which they did. Far beyond the scientific knowledge I learned and the skills I developed as a member of this panel, was the chance I had to be a part of a community of people working together to help and give back to their own communities from all across south-west Wales. I loved being a part of dynamic discussions that could sometimes change the course of entire research endeavours, and ultimately better serve the people who need the results of these studies most.
So, if you are considering becoming a member of this panel, my only advice to you would be to jump right in because scientific progression does not happen in a vacuum, and we need your voice to help understand and improve our community’s healthcare needs, from “Particle to Person to Population.”
The genomic data integration study, Jedi, was funded by the Medical Research Council to explore ethical, legal and social issues in the use of genomic data linked to phenotypic health data for research.The study design was multi-faceted and included: a review of legislative and regulatory requirements; example studiesusing genomic and phenotypic data in combination; datagovernance arrangements in published research; case studies of organisations working with genomic and phenotypic data; and public views and expectations.
The engagement activities took the form of eight public workshops across a range of demographics and focused particularly on the acceptabilityof differing models of data use. These viewpoints alongwith the other findings of the study were used to develop a set of recommendations towards a framework for the use of genomic and phenotypic data for research, particularly in data safe havens.