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.
Genomic Data Integration: A Public Involvement Case Study
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.