Table 4 Costs and Consequences Framework
| 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 | |