General resources
We are committed to involving patients and the public in the development, conduct and presentation of our work. This section showcases our project specific patient and public involvement to date, and our plans for future events. If you have a particular interest in our work and would like to be involved, please get in touch here: Contact us.
Project-specific resources
PROSPECTOR
Patient and Public Involvement (PPI) is a key part of the PROSPECTOR study. The main concepts which the study investigates are not simple, and we remain very grateful to members of the public who have helped improve our communication and description of these ideas.
The feasibility of conducting large scale trials using an [[clinically integrated trial approach]] is heavily contingent on finding the right approach to participant consent, which permits the conduct of the study whilst prioritising patient autonomy and choice as much as possible. It is impossible to have these conversations absent from patients and the public and as such, this has been much of the focus of our existing PPI work, and also studied more formally within the qualitative aspects of the study methods.
In preparation for PROSPECTOR, two focus groups were conducted, organised and facilitated by the UCLH/BRC PPI team . The first addressed themes including utilisation of electronic clinical data for research, and the presence of naturally occurring variation in practice for evidence-light treatments. The second focused on the premise of flexible ePOCR and the need to investigate alternative consent models to conduct [[comparative effectiveness research]].
These groups highlighted a lack of awareness amongst patients regarding evidence gaps for routine treatments. Both groups agreed that this was a priority area for future research.
Future planned work
Our future work will build on our existing PPI work. We will investigate patient attitudes towards the PROSPECTOR study design and alternative consent mechanisms such as “opt out consent” within the feasibility study.
We will also conduct further focus group work with the public to ascertain views on the acceptability of opt-out consent for future research studies.
We are continuing to work on producing materials to improve awareness of our study and ideas around opt out consent. We will be using some of these materials in our upcoming PPI and focus group events, but welcome any feedback you might have:
- Opt out consent video
- Opt out consent leaflet
Communicating our research ideas and findings effectively is important. As part of his PhD, Matt Wilson undertook an IMPACT Fellowship with the UCL Institute of Healthcare Engineering. Part of that fellowship involved presenting research as part of a “Science Showcase”.
Previous PPI events:
