Patient and public involvment

Question 1

what is patient and public involvment in research?

Answer 1

“Research being carried out ‘with’ or ‘by’
members of the public rather than ‘to’, ‘about’
or ‘for’ them.”
- NIHR definition

Question 2

Patients and the public work alongside
researchers to shape

Answer 2

• What research is done;
• How research is carried out;
• How results are shared and applied in
  practice

Question 3

‘Involvement’ in research is different from ‘Engagement’ or
’Participation’

what are the differences?

Answer 3

• Involvement - members of the public are actively involved in proects. part of the team.
• Engagement - information about research is shared and disseminated
• Participation - people take part in a research study

Question 4

Benefits to the researchers of involving patients?

Answer 4

• Greater knowledge and understanding of experiences of patients
  and the public
• Improved relationships with communities
• Increased credibility
• Greater public trust
• Developing partnerships that can affect change

Question 5

Benefits to PPI Contributors

Answer 5

• Opportunities to develop new skills/knowledge
• Experience a sense of empowerment
• Gain support/friendships
• Enjoyment and satisfaction
• Helping achieve better care and treatment for others
• Opportunities to give something back
• Make a real difference to research

Question 6

what different stages in the research cycle might we include PPI contributors and what benefits of this?

Answer 6

Identifying research priorities - Ensures research addresses needs of patients

Designing Trial - Ensures design is ethical and practical

Designing public facing documents - Ensures language/format/style is accessible and understandable

Informing recruitment/retention
strategies - Helps ensure the study recruits enough participants. Troubleshoot issues.

Disseminating/ sharing research - The ‘power’ of the patient story in sharing the importance of research and the findings

Implementing research Patients as ‘champions’– help ensure research
evidence taken up in practice

Question 7

4 pillars of public engagement

Answer 7

1. reach - who are we trying to involve, engage and get to participate in the trial.
2. relevance - does the project capture the priorities of the patient population.
3. refienment - how patients can shape and improve the quality of the study. e.g., if n with certain disorder likely to sleep in, dont make any early morning appointments
4. relationships - build meaningful relationships with patients and partners in the research project