Consent and ethics
Participation in a JLA survey is anonymous and no personal data will be published. However some people, when responding to questionnaires, describe their uncertainties by telling a personal story. The survey must make it clear exactly what the data will be used for. Typically, a PSP must make it clear that people’s uncertainties may be published anonymously. The Steering Group should consider early in the process whether they may want to use the data in any other ways later on. If this is likely, the group needs to consider how to make this clear to those completing the survey. The survey should either explicitly ask for consent, or make it clear that participation in the survey assumes consent.
When collecting and storing identifiable data about individuals there are legal requirements under the Data Protection Act. The organisation holding the data is responsible for complying with the Act.
The valuable contributions of the many un-named individuals deserve acknowledgement in reports. Naming partner organisations indicates the wide range of people contributing their ideas.
To see an example of wording which explains that participation in the survey automatically indicates consent for anonymous publication of questions, please see the Cleft Lip and Palate PSP survey, available in the Key Documents section of that PSP on the JLA website.
Although it is important to choose and apply priority setting methods ethically, PSPs do not normally come under the remit of the NHS Research Ethics Service (NRES), where research priority setting has been seen as service evaluation and development. The leaflet, Defining Research, helps distinguish between how the NRES sees research, audit or service evaluation and public health surveillance.
Despite not requiring ethics approval, if PSP work is being undertaken within certain NHS settings, local R&D approvals may be required. Please check with the relevant NHS care organisation(s) what review arrangements or sources of advice apply to projects of this type.
If necessary, applications for permissions and approvals can be submitted through the Integrated Research Application System (IRAS)
A decision tool is available on the Health Research Authority (HRA) website to help identify whether or not a study would be considered ‘research’ by the NHS.
A statement was developed by the National Research Ethics Service (NRES) and INVOLVE, to provide clarity and guidance on patient and public involvement in research and the requirements of research ethics review.
Ethics advice and approval may also be sought from within institutions hosting a PSP.