Participation is where a patient or member of the public has given informed consent to take part in the research study (i.e. they have reviewed patient information materials and signed a consent form, both of which have been approved through the research ethics process)
For Example:
- Giving a blood sample or a tissue biopsy for research
- Completing a quality of life or mental health questionnaire
- Trialing a new procedure or medical intervention
- Being interviewed about one's lived experience
Patient public involvement and engagement
Involvement is where research is carried out with or by members of the public rather than to, for or about them. Involvement is commonly referred to as patient and public involvement or PPI.
PPI is where members of the public have an active role to play in the research, where contributors share decision making power with researchers and where they play the role of the critical friend, asking the difficult or ‘obvious’ questions that may not have been considered.
PPI recognises the expertise that members of the public have from living with conditions, caring for people or from receiving health and social care and the value this can have to inform, influence and improve research.
For Example:
- Being a co-applicant on a research project
- Inputting into the design of a research study
- Commenting on and developing patient information or other research materials
- Advising on the management of a research study
- Helping to collect and analyse research data
- Patient public involvement and engagement
- Contributing to the writing up and dissemination of research findings
Engagement is when we share and communicate information about research and create opportunities for researchers and the public to hold two way dialogues; to ask questions, discuss and debate research.
For Example:
- Taking part in science festivals open to the public with debates and discussions on research
- Holding open days where members of the public are invited to find out about research
- Raise awareness of research through media such as television programmes, newspapers and social media
- Disseminate to research participants, colleagues or members of the public on the findings of a study