Listening to patients’ voices has proved enlightening as their voices come alive through qualitative research.
Another level of providing patients' a voice is by involving them in the design of a research project. The INVOLVE group (a national advisory group for public involvement in research) defines Patient and Public Involvement (PPI) as research actively carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’, or ‘for’ them.
Patients bring new perspectives to established (research) processes and demonstrate a strong desire for involvement. Patient participants are highly engaged and want their voices to be heard–and they want to be involved every step of the way.
Furthermore, journals are increasingly expecting Patient and Public Involvement statements from researchers who submit articles for publication.
For instance the BMJ Open announced that submission to the journal should include the followng PPI statement sat the end of the Methods section.
For this journal a PPI statement should answer the following questions:
- How was the development of the research question and outcome measures informed by patients’ priorities, experience, and preferences?
- How did you involve patients in the design of this study?
- Were patients involved in the recruitment to and conduct of the study?
- How will the results be disseminated to study participants?
- For randomised controlled trials, was the burden of the intervention assessed by patients themselves?
- Patient advisers should also be thanked in the contributorship statement/acknowledgements.
If patients were not involved, authors must state this.