Consumer Panel

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

JOIN US.

To find out more about public involvement and engagement or to join the Consumer Panel, please email: email: claire.newman@swansea.ac.uk


“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.”Rosalin PandaConsumer 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.”Jan DaviesConsumer 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.”Dot WilliamsConsumer 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.

The ‘how’:

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.

Read the full case study report here.

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.

First published by Wales Cancer Research Centre:

Read below about how the PIRIT toolkit (Public Involvement in Research Impact Assessment Tool) is set to play a key role in an upcoming activity with the SAIL Databank consumer panel at Swansea University.

The SERENITY Study, a pioneering Horizon Europe project, aims to revolutionise decision-making support for clinicians, patients with advanced cancer and their carers.

At the heart of this project is the Patient and Public involvement (PPI) team at Cardiff University: Prof Anne Marie Nelson, Dr Michelle Edwards, Dr Elin Baddeley and Dr Kathy Seddon, who are strategically incorporating the PIRIT toolkit (Public Involvement in Research Impact Assessment Tool) as part of their patient and public involvement strategy across six vital work packages.

Shaping the conversation

To begin the conversation, a group of public contributors from the UK actively participated in two workshops. Focused on findings from a realist review of literature on shared decision-making and deprescribing in end-of-life care, the contributors began to share their invaluable insights.

During the first workshop, contributors engaged in discussions on improving communication between doctors, patients, and families in the context of transitioning to comfort care. Key takeaways emphasised the significance of effective communication, the timing of these crucial conversations, and the consideration of individual preferences and cultural sensitivities. These insights became pivotal in the subsequent analysis of the realist review.

In a second workshop, public contributors further enriched the process by reviewing and providing thoughtful commentary on the theory developed from the review findings. This collaborative approach ensured that the patient and public perspective played a central role in shaping the project’s trajectory.

PPI Research Partner Kathy Seddon said:

“It was very interesting to hear the initial findings of the realist review. The group really engaged with them and offered insights from their lived experience. The patients’ viewpoint on conversations with health care professionals added breadth and richness to the findings”. 

Impactful engagement in qualitative interviews

The SERENITY Study also tracked the impact of public involvement in a work package focusing on qualitative interviews that explored both clinician and patient experiences regarding antithrombotic medication decisions. Public contributors played a vital role in reviewing participant information, interview guides, and initial themes derived from interview data. Their input ensured that the study encompassed the crucial role of carers in decision-making while preventing participants from feeling overburdened with questions.

PIRIT in action: engaging the SAIL consumer panel

PIRIT is now set to play a key role in an upcoming activity with the SAIL consumer panel at Swansea University. This engagement aims to gather the panel’s views on epidemiological data collected from a cohort of cancer patients in Wales. This data, a part of another SERENITY work package, will significantly contribute to informing the development and evaluation of the shared decision-making tool. The SAIL panel engaged enthusiastically with SERENITY and the discussion produced some great insights for the next stages of the project such as the potential use of AI in the decision aid tool.

Looking ahead: PIRIT and the future of the SERENITY Study

As the SERENITY Study progresses, PIRIT will continue to help to guide research. Future plans involve using PIRIT in a Delphi Consensus study to decide the content of the shared decision-making tool. Public contributors will be actively involved in developing components for the tool and participating in the evaluation through a randomised controlled trial.

At the end of the study, a comprehensive report will be provided to the PIRIT team, highlighting the strategic use of PIRIT and its effectiveness in enhancing patient and public involvement within the SERENITY Study. This new approach not only reshapes the landscape of cancer research but also sets a precedent for the power of collaborative decision-making in medical research projects.  

PPI Research partner Kathy Seddon said: 

“It is a real pleasure to be part of this ground-breaking use of PIRIT as part of the SERENITY PPI strategy. As one of its designers it is exciting to see the flexibility it offers in use.”

To download the PIRIT toolkit, please visit the website.

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