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Authors
Elliott, R. S.
Taylor, E.
Ainsworth, J.
Preston, J.
Smith, E. M. D. S. http://orcid.org/0000-0002-8371-7597
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Article History
Received: 23 March 2022
Accepted: 11 August 2022
First Online: 15 October 2022
Declarations
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: NHS ethical approval was not required for this PPI initiative as this was a consultation exercise in research design. UK National regulations from the NHS Health Research Authority differentiates between research consultation where individuals are not research participants but acting as specialist advisors, versus research participation where individuals are the subjects being researched. In the latter (research study) ethical approval and informed consent is deemed mandatory, whereas in the former (PPI initiative) ethical approval is not necessary and verbal consent for the use of anonymised comments which help to inform the development of research is satisfactory. This is supported by information provided on the UK NHS Health Research Authority website and in the paper “How to involve children and young people in what is, after all, their research” which details the UK approach to PPI [CitationRef removed, CitationRef removed]. All participants provided verbal consent at the beginning of each PPI group session for anonymised use of the following in presentations and publications: (1) basic demographics (age, health condition), (2) anonymised scores of pre/post session understanding of treat to target, and (3) anonymised quotes which help to inform the design of the research/animation. Verbal consent was preferred by the PPI group organisers as it is not possible to know which young people will attend the PPI group meetings each time. All participants in the Lupus UK and Your RHEUM group were at least 16 years of age. For participants < 16 years old who were part of the Generation R Young Persons group, written consent was taken by the group co-ordinators from a parent/carer, and assent from the young person themselves, at the time of joining the Generation R group, to allow use of anonymised data that helps to inform research design (including anonymised demographics and quotes).
: Not applicable, see above.
: The authors declare that they have no competing interests.
