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Table 4 Costs and Consequences Framework

From: The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study

Impact upon Costs (−) Benefits (+)
Researcher - Time (recruiting PPI contributors; travelling to meet with PPI contributors; meetings; electronic communication; preparing newsletters)
- Increased pressure/stress
- Sensitivity to criticism
+ A motivating factor, with PPI contributors bringing an enthusiasm to the project, a keenness to see results
+ PPI contributors supportive of the project
+ Researchers gaining a better understanding of the condition of interest
Research Project Shaping the research question and maintaining focus   + Setting and maintaining focus on the research question
+ Addressing important issues but also ensuring a degree of realism
Research methods/design - Can result in duplication of effort (PPI involvement and qualitative work) + Helping to make surveys and processes relevant, accessible and acceptable
+ Ensuring research is beneficial to patient group
Recruitment & recruitment materials - Potentially homogenous sample + Relevance, clarity & accessibility of recruitment materials
+ Making useful contacts, increasing recruitment rates
Conducting & managing research - PPI contributors can be unreliable (this was reported in the case of young people)
- Direct payment of PPI contributors for attending meetings
- Travel costs (either the researcher visiting the PPI representative or the PPI representative attending meetingsa)
- Food and refreshment costs
- External venues
+ Validity and safety of research
+ Improved follow-up rates
Commenting on results   + Opportunities to gain feedback and to validate the results.
+ PPI contributors helping to interpret the data.
Dissemination - Financial cost of PPI contributors attending conferences and external events + Promotion of outputs when these take the form of training modules or tool kits
+ Guidance in terms of presenting results in a format useful to non-researchers.
Generating new research questions (expanding upon current research)   + Generating new/future research questions
Research Institution - Diversion of research funds to PPI (opportunity cost in terms of funded researcher time, etc.)
- IT and other support infrastructures/resources (including printing & internal room bookings)
+ Increased impact of research
+ Recognition as a centre with expertise and experience of involving patients and public in research (raising the institution’s profile)
Funder   + Avoiding devoting resources to a topic which is not important (e.g. exploring an intervention which is not appealing to service users)
PPI contributors - Opportunity cost (paid work, child care, informal care & leisure time)
- Monetary costs not reimbursed (travel, formal child care)
- Negative impact on health associated with stress, anxiety or frustration
- Complications in terms of state provided welfare payments
+ Increased understanding & knowledge of one’s own condition
+ Increased awareness of treatment options and how to access services
+ Developing or enhancing skills (e.g. public speaking, team work, IT) – possibly through formal training
+ Understanding of research and research processes
+ Positive emotional impact associated with meeting new people, feeling as though one is doing something worthwhile and generally being active
  1. Entries in italics were identified from the literature but not verified by respondents
  2. a Sometimes included within the direct payment