1. KTE Part B PPI Impact
Momoko Sato
NIHR DEC London

2. Impact

3. The PIRICOM Study (Brett et al., 2010)
Method:
Type of review: systematic
Databases: Medline, Embase, CINAHL, PsycINFO, Social Science Citation Index, Healthcare Management Literature, Cochrane
Inclusion criteria
Publication years:
Type of study: RCTs, qualitative studies, case studies etc
Study design: Included impact of PPI on adult service users, researchers, or communities under research
Data retrieved (98 papers):
Reported impact and outcomes of PPI
The conceptualisation and theorising of PPI
Methods of measuring PPI and economic costs of PPI

4. Definition & Areas of impact
Impact is used to refer to the influence or effect of PPI on a range of areas
“Despite the limitations in the evidence base, it was possible to identify PPI impacts in relation to the following areas: research and the research process, users, researchers, researcher participants, community, journals, policy makers and funders.”
Brett, J. et al (2010). The PIRICOM Study. The University of Warwick.

5. Capture or measurement of PPI
Little focus on developing instruments capable of capturing PPI impact
How can we measure the PPI impact?
Now, within your group’s allocated area of impact, please prioritize the aspects of impacts within the area. Then please discuss how to assess.

6. Workshop - Impact Areas of impact
Research and research process (2 groups)
Users (1 group)
Researchers (1 group)
Participants (1 group)
Community
Policy makers
Funders
Please
Describe impact theme including what (and how) to measure
If have time, discuss other impact themes

7. Impact on research & research process
Developing research questions
Identifying and prioritising topics
Provide pragmatic criticism of research protocol
Insights
Improving response rates
Recruitment
Development of research instruments
Data analysis
Data collection
Dissemination and implementation
Scientific and ethical conflict

8. Improved self-confidence & self-worth
Impact on users
Users
Improved self-confidence & self-worth
Communication
Level of knowledge
Level of Skills
Frustration
Lack of training
Practical issues
Personal benefits: feeling empowered, feeling listened to, feeling more positive, feeling more confident, and feeling a sense of fulfilment and satisfaction.
Communication : feeling left out of regular communication within the research team
Knowledge: their conditions
Skills: research methodology, speaking,
Practical issues: difficulties with travel arrangement, financial burden of travelling, childcare and respite care
Frustration: not listened by researchers, felt their contribution was not valued, often being asked to comment on developed materials rather than be involved in the development of them. Burden of duty and having re-live their experience

9. Impact on researchers Beliefs and attitudes changed
Fresh insights into issues
Greater understanding of community health needs
Building a good rapport with users
Beliefs and attitudes changed
Control/Sharing power over research
Conflicting time frames of researchers and users

10. Impact on the funders Makes allocation of funds more transparent
Makes funding organisations more accountable
Funders want to fund specific projects to fit their own needs
Funders need to be more supportive of PPI

11. Impact on the community
Increase awareness of disease/condition in the community
Increase recognition of the research study in the community
Better targeted service in the community
More successful health promotion
Introduction of services and changed practice
Increased time and cost to community organisations

12. Impact on participants
Access to information about their conditions
More friendly approach to data collection
Support from lay researchers with similar experience
Tension build up between lay researchers and participants
Not wanting to share personal experiences with people (lay researchers) they know well

13. Impacts on publishing in academic journals
Small word limits on journal leads to PPI not being reported
Conventions of publishing can create challenges for how users are involved in publication

14. Impact on policy makers
Insights into decision-making
Helps legitimize research findings used to change policy
Complexities of conflict between clinicians, researchers, and users
Constant changes of health and research processes

15. References
Brett, J., Staniszewska, S., Mockford, C., Seers, K., Herron-Marx, S., & Bayliss, H. (2014). The PIRICOM Study: A Systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research.