What is Public and Patient Involvement (PPI)?
Public and patient involvement (PPI) occurs when the public and/or patients work in partnership with researchers in setting priorities for research, in planning and managing research studies, as well as in summarising, distributing, sharing, and putting results into practice.
- ‘Public’ means everyone in Ireland and further afield who has an interest in health and social care as a public service including potential users of services.
- ‘Patient’ means people who use services such as patients, service users, clients or their carers.
- ‘Involvement’ (also called ‘engagement’) means the active involvement between people who use services, carers, the general public and researchers.
Why is not PPI?
PPI is not the recruitment of study participants. Whilst this falls under patient-oriented research, it is participation of the public/patient rather than involvement.
It is also not work aimed at raising awareness of the public around research, such as media publications of research findings, and outreach activities such as open days in research facilities.
Why is PPI important?
From a researcher point of view, PPI can improve quality and relevance of the research being conducted.
- provide a different perspective – even if the researcher is an expert in their field, their knowledge and experience will be different to the experience of someone who is using a service or living with a health condition
- make the language and content of information such as questionnaires and information leaflets clear and accessible
- help to ensure that the methods proposed for the study are acceptable and sensitive to the situations of potential research participants
- help to ensure that the research uses outcomes that are important to the public and patients identify a wider set of research topics than if health or social care professionals had worked alone
- help you increase participation in your research by making it more acceptable to potential participants
- improve the competitiveness of your research proposal in funding competitions
In addition to improving relevance and quality of research, PPI also ensures that research is influenced by broader principles of citizenship, accountability and transparency.
Many funders including Cystinosis Ireland and the Health Research Board now require PPI to be an integral element of any research proposal submitted for funding consideration. The PPI involvement is scored and can have a significant impact on whether a research proposal is funded or not.
How can Cystinosis Ireland help?
- We can assist you in incorporating the patient voice at all stages of your research project from the conception of the research idea, through to the design of the research project through to project completion and the dissemination of the research outputs
- We can assist you in identifying patient experts who are interested in being part of your research management team
- We can assist you in developing lay oriented abstracts
- We can advise you on the language and content of questionnaires and/or patient information leaflets
- We can help you identify the research priorities of patients and families living with cystinosis
- We can ensure that your research is relevant and will benefit patients and families living with cystinosis
- We can provide you with access to the Worldwide Cystinosis Advisory Board
The Worldwide Cystinosis Community Advisory Board (Cystinosis CAB) has been formed by patient groups for cystinosis in Europe, USA, South Africa and Australia and is based on the EuroCAB principles as developed by Eurordis.
The Cystinosis CAB has a number of goals.
- We engage with pharmaceutical companies for clinical trials, drug development, educational materials and any other appropriate topics.
- We want to engage with early-stage research as part of PPI – Public and Patient Involvement in research.
- We want to engage with physicians/clinicians in any way that might be helpful. In particular, with physicians and clinicians, we would like to engage around research, drafting clinical guidelines, etc.
The members of the CAB are parents of children with cystinosis and adults who themselves have cystinosis. They are nominated to sit on CAB by their national cystinosis patient organisations. CAB members are educated and trained in clinical trials, drug development and research. The CAB can provide the patient voice and patient expertise.
The CAB is a working group of Cystinosis Network Europe.
Learn more about what the Cystinosis CAB can do for you here