PATIENT AND PUBLIC INVOLVEMENT

Question 1

What is PPI?

Answer 1

Actively working in partnership with patients & members of the public to plan, manage, design & carry out research
Research undertaken ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’, or ‘for’ them

Question 2

What is involvement?

Answer 2

members of the public are actively involved in research projects & in research organisations
E.g. discussions about research design, recruitment process etc, in order to get public’s perspective

Question 3

What is a participant

Answer 3

people take part in a research study

Question 4

What is engagement

Answer 4

information & knowledge about research is provided & disseminated

Question 5

what is consultation

Answer 5

asking people for their views

Question 6

collaboration?

Answer 6

active, on-going partnership with members of the public in the research process; collaborating to design, undertake &/or disseminate the results of a research project

Question 7

what are the 3 principles underlining PPI?

Answer 7

1. PPI gives researchers access to privileged knowledge
2. PPI embodies principles of citizenship
3. PPI can help the research process practically

Question 7

user led?

Answer 7

where the initiative & subsequent decision making is with the service users

Question 8

what is co-production

Answer 8

“an approach in which researchers, practitioners & the public work together, sharing power & responsibility from the start to the end of the project, including the generation of knowledge”

Question 9

What are the benefits of asking patients?

Answer 9

help identify & set research priorities could contribute to more efficient clinical research & help reduce avoidable waste

Question 10

How to do PPI?

Answer 10

• advertise in clinics
• patient groups and charities
• individuals : through own network
• research design service: research support service (RSS) may have individual or group contacts
• clinical research network (CRN)
• Applied research collaboration (ARC)
• people in research - u can advertise your research opportunities
• websites, community boards, twitter, newspapers

Question 11

What to do when recruiting PPO consultation group?

Answer 11

consider recruiting via poster ads in clinics etc, so that patients can choose to respond

Question 12

ways public contributors can be involved in the research cycle

Answer 12

1. identifying and priorotising
2. commisioning
3. designing and managing
4. undertaking
5. disseminating
6. implementing
7. evaluating impact

Question 12

what is identifying and prioritising

Answer 12

setting the research q and agenda together

Question 13

What is comissioning?

Answer 13

sitting on NIHR panels and reviewing funding applications

Question 13

what is designing and managing?

Answer 13

researchers asking PPI group their opinions on the ASTAR proposal now updated to ‘an upper limb training study for survivors in a rehabilitation unit’. the researchers then asked a PPI member to join the writing team

Question 14

What is undertaking

Answer 14

patient-researcher carrying out semi-structured interviews with patients, using interview guides

Question 15

what is disseminating

Answer 15

co-authoring and presenting posters at conference, contributing comments on presentation drafts; co-presenting to academic audience

Question 16

what is implementing

Answer 16

following on from the early ASTAR presentation to the BSUH Lay panel, a PPI member assisted with drafting the exercise manual

Question 17

what is monitoring and evaluating?

Answer 17

interviews with patient/public members and research staff to gather views on the impact of PPI and what could be done to improve PPI

Question 18

monitoring and evaluating factors?

Answer 18

Describe who has been involved at each stage
Describe what PPI has contributed to the proposal
Describe how the proposal has benefitted & changed from the contribution
Describe how involvement will continue throughout the project & the on-going contribution you expect it to make
Include (adequate) costs of PPI in your application

Question 19

What is the HRA’s 4 principles for meaningful involvement

Answer 19

Involve the right people
Involve enough people
Involve those people enough
Describe how it helps

Question 20

What are the benefits of PPI for research language?

Answer 20

helps to simplify languages general community understands
PPI may ask you for illustrations/images for explanation
encourages not using ‘taking’ or taken consent as consent is given/received
encourages not using the term subject

Question 21

what is the reimbursement of. ‘good practice’ principles

Answer 21

good practice for general public to be paid for their time and involvement, skills and expertise