KTE Part B PPI Impact Momoko Sato NIHR DEC London

Impact

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: 1995-2009 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

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.

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.

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

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

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

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

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

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

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

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

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

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.