PPI Flashcards
What is PPI?
Patients, carers and members of public are active partners in research rather than subjects of research.
3 examples of involvement:
Patient reps as members of trial management groups or trial steering committees
Patients and carers comment on draft patient info sheets
Patients and carers help think about design of a trial
Difference between engagement and participation:
Engagement: Info and knowledge about research is provided and disseminated (eg open days)
Participation: being subject of research
How do you involve patients in developing trials? 3
Set up one off patient / community group
- advisory group
- Access existing groups
- Membership of a trial management group or steering committee
How do you get patients involved when doing the trial:2
Work with existing patient groups
Patient rep
How to involve patients in telling others about the trial?
Patient reps on patient roadshow
Advantages of an advisory group: 3
Enables researchers to gain a wide range of views
Builds knowledge and understanding of trial
Involves lots of people who could advocate for trial
Disadvantages of patient advisory groups: 3
Expensive
Time intensive
Need to keep in contact with them
Advantage of accessing existing groups of patients 3
Enables researchers to talk to wide range of patients and carers
Low cost
Not too time consuming
Disadvantage of accessing existing groups of patients: 2
Not always easy or possible to find one relevant and willing to meet
People in these may know very little about research
Advantage of having patients as members of trial management groups or steering committees: 4
Can provide links with other groups
Relatively cheap
Can remind committee of why trial is important
can help with problem solving
Disadvantage of patients as members of trial management groups: 3
one or two reps cant represent everyone
confidence
trial lasts years
What impact does involvement have at the developing stage? 3
Influence on trial design and outcome measures that are imp to patients
design patient info materials
publicise the trial and build trust
What impact does involvement have at the doing stage? 4
Publicise and build trust
Revising patient info material
recruitment and retention of patients
giving researchers confidence
What impact does involvement have at the telling stage? 3
Publicise results
campaigns to ensure results are implemented
thinking about new research topics
