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Once agreed, projects forwarded interview invitations and information sheets to their researcher team including PPI contributors. Participation was voluntary and exclusion criteria included: those aged 13 years, or under, those unable to give informed consent, any PPI contributor who is also a current patient of clinical investigators on the research project and those unable to speak English.
This included explanations of their right to not answer specific questions or to withdraw at any point, and we would agree a form of words or action they can use if they wished to stop the interview. To maximise recruitment and participant convenience, one-off 30 minute telephone interviews were conducted. The option of face-to-face interviews was also open to participants and vulnerable interviewees were offered the option of having a non-participant present. The interviews were semi-structured and conversational, enabling informants to freely describe their experiences and raise unanticipated topics.
Both topic guides covered the same core topics, tailored for different participants and iteratively, to reflect ongoing analysis within that case. Case study participants were invited to join separate researcher or PPI focus group s up to ten people , to represent their case study in discussing interview analysis themes. Our two PPI co-researchers received training to support focus group planning, discussion guide refinement and focus group facilitator and observer roles.
Three one and half hour focus groups ran within working hours at institutional offices. Interview and focus group recordings were transcribed verbatim for content, rather than sub-vocalisations and pause duration. Researchers checked transcriptions, field notes and documents for accuracy and anonymised them before entering this data into computer analytical software NVivo.
Attendance for the second event was widened to include national representatives from other CLAHRCs and PPI organisations to share initial case study findings and discussed implications for evaluating and building stronger PPI within a research programme. An abductive analysis combined deductive reasoning informed by the NPT four domains and 16 constructs adapted to our research objectives and additional inductive, thematic coding see S2 Appendix. In presenting findings we set out and evidence our interpretations by providing illustrative data extracts for each interpretive point.
We indicate how each extract is drawn from our dataset and can be contextualised in specific cases listed in Table 1 by presenting each extract identified with an extract code. These codes provide for each extract the identification number for the related case study, and the participant number group PPI or Res of the participant or participant group being quoted.
They received support and training in NPT, the conduct and analysis of focus groups and are acknowledged as co-authors or otherwise in all outputs. Of the original 10 projects invited to participate, eight accepted and two declined one saw taking part as too burdensome given their other commitments, and another declined to acknowledge invitations.
Two more studies were then invited and accepted. The crosscutting health economics research theme, having inter-related research teams, mostly performing secondary analysis on trial data sets and none with active PPI, were treated as one case study. For six case studies we managed to recruit both researchers and PPI contributors. For the other four, two had no PPI contributors at this time and two had PPI contributors not possible to invite as they did not meet our ethics inclusion criteria.
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In total, across ten case studies, 24 researchers were interviewed, and 13 PPI contributors, from June to November Five researchers and four PPI contributors were interviewed over the phone. Four PPI contributors adults with learning difficulties were interviewed with a case study researcher known to them for support. In some cases, research staff were no longer employed on the project or did not respond to invitations. It is not possible to give accurate figures for PPI collaborator response rates, because not all projects knew how many PPI contributors had been involved on projects, where projects had worked with regional PPI groups who collate anonymised feedback.
Also, as numbers or contact details for such PPI contributors invited were not available, we cannot say how many declined or why.
Journal of Sailing Technology
They ranged in length: 12—36 months, with the majority employing mixed methods designs. The PPI roles ranged from one-off, up-front consultative events to collaborators acting in a consultative capacity on an advisory group, to those acting as PPI co-researchers. Three focus groups were held. Two stakeholder events were also held with 23 and 24 attendees respectively.
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The fuller the radar plots, the more fully embedded the PPI. Spikier plots illustrate internal variance in degree of embeddedness. Acknowledging gaps in data collected, these plots were used as useful heuristic sketches to inform our interrogation of data and invite stakeholder interest. This section now details findings on PPI embeddedness within case studies and the programme across the four main NPT constructs. Material points are summarised at the end of each section.
Findings here relate to the work that research teams do when making sense of PPI and to what extent PPI is an internalised way of working. Those PIs more experienced and confident in PPI, asserted that universal definitions of PPI design, roles and purposes, cannot be taken for granted and are perhaps not desirable, see also [ 38 ]. The confidence expressed by researchers in Focus Group 2, in doing the work of defining or co-defining PPI in context, contrasts with the nervousness of Focus Group 1 researchers, seeing such tailoring of PPI as potentially problematic.
In contrast PPI had to be meaningful and non-superficial, requiring more guidance and evidence-based practice, see also [ 39 ]:. Linked to the dangers of PPI becoming too formulaic, as it is embedded [ 38 ], is another of that drawing upon convenient, pre-formed, pre-trained, supported, generic PPI groups raises questions for the diversity and representativeness of the PPI contributors within CLAHRC EoE, as expressed in the quotation below, see also [ 40 — 42 ].outer-edge-design.com/components/via/2089-mobile-phone.php
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Such efficiencies of working with established PPI groups have implications for networking beyond those already engaged in research and developing a programme-wide PPI culture, and wider social justice concerns about who is represented and excluded, see also [ 43 ]. Lack of run-in time both with developing research applications and setting up projects also disadvantages teams with little familiarity with, or responsibility for, developing PPI, particularly for researchers not networked with existing groups and expertise:.
Finally, another key finding in how case studies made sense of PPI, was that the different persons interviewed senior academics, practitioners, contract researchers, PPI contributors varied in knowledge of the CLAHRC as a distinct programme and a funder with specific commitments to PPI, only expressed by one senior researcher:. PPI contributors interviewed therefore often talked about their broader involvement in research and struggled to distinguish how they were involved in any specific CLAHRC project, or in recalling any specific project activities.
Researchers in the Patient Safety theme had fewer pre-existing PPI relationships and contacts with PPI organisations; and whilst the Health Economics theme was more familiar with PPI in research, their work is more often a component of a larger healthcare research trial, with PPI implemented at a wider level:. Those themes closer to patients and service users could draw on existing PPI contacts. For example, clinicians and academics within regional service user networks can keep research and PPI in view between funding calls, particularly useful for bid development when there is a local funder:.
Working with familiar individual service users or PPI groups with whom relationships are already established was viewed as efficient and pragmatic, particularly if PPI was a one-off consultation. These researchers later benefitted from support provided by the PPI theme once set up in advising on PPI design and signposting to possible sources of recruitment of PPI contributors. Beyond initial applications and project set up periods, dealing with the day-to-day operational or administrative aspects of PPI requires inter-personal skills, see also [ 23 ]p Such aspects, e. However, where dealt with internally within project teams, such aspects were delegated to junior members of research teams yet often the required sensitivities not clearly defined or formally recognised within job descriptions.
Indeed, an economic evaluation of their study PPI model raised team doubts over its legitimacy. Whilst clinicians endorsing this model entailing extensive support as integral to the study, others questioned the value of this investment. Health Economics , the consequentialist.
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PPI contributors spoke in general terms about the legitimacy of PPI, and the unique contribution they could make to projects as distinct to that of the researchers:. Researchers in turn acknowledged the importance and challenges they faced in keeping PPI in view, whilst also progressing the research. Those case studies that involved PPI contributors on a regular basis had committed to tailor their ways of working to maintain communication, as discussed next.
In summary, our findings demonstrate:.
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Again, we found extensive benefits, cost- and time-savings from working with established PPI groups which had funded co-ordinators. Unfilled or over-stretched co-ordinator posts could often lead to less-sustained PPI. PPI integrated in institutions which hosted projects and PPI groups was seen to encourage researcher-PPI collaborator communications about funding decisions, feedback on PPI contributions, ongoing project updates, robust rapport and common understandings.
The regional PPI groups train their volunteers, with projects offering additional training for PPI contributors undertaking co-researcher roles such as data analysis CS1 or specific tasks CS4. Having shared expectations around communication was recognised as important:. Res03 FG2. Projects which set up their own bespoke PPI groups CS2 or events CS3 did so utilising their clinical understandings of the client group. So CS2 worked with PPI contributors to develop training to help members understand research, their role and the study purpose. The PPI contributors interviewed for CS2 expressed how they felt their contribution was being recognised:.
No specific training was given by CS3, but the researcher framed and focused the involvement task and process for them. Thought given to making PPI accessible was also evident in organising meetings at convenient times e. Our findings also demonstrated the importance of reviewing the allocation of PPI work to check its appropriateness to skill and comfort levels of PPI contributors, and to offer them appropriate training, and support.
Whilst researchers recognised this, any consequent changes were likely under-reported as they were not formally documented or monitored by funders, see also [ 23 ]p Research has highlighted the importance of mutual understanding and trust in developing relationships to ensure successful PPI [ 18 , 21 , 23 , 44 ]. Relationships are especially important for projects where PPI is extended over time, beyond one-off events.
In recognition of this, creative, fun facilitation techniques were sometimes used to help maintain relationships:. These instances of experienced mutual acknowledgment contribute to building trust within the local context, upon which future projects can draw. Most contracted researchers were vague about budgets, including PPI budgeting, and whether it was adequate. Instead, sharing PPI experiences and guidance largely remained within-workplaces through formal presentations and informal discussion.
In summary:. This construct refers to work assessing the effectiveness of working with PPI, methods and systems for appraising and reconfiguring PPI. Those researchers who used the tool, suggested it was a useful log but discouraged holistic, nuanced communal appraisal by a focus on reporting positive impacts. PPI contributors, especially those with cognitive impairments, could struggle, without support, to appraise their project role.
Indeed, several interviewees underlined the methodological complexities in formally evaluating PPI and defining and measuring PPI impact. PPI costing and economic impact evaluation was found especially challenging. Many researchers struggled to articulate specific PPI impacts as actions rather than epistemological and experiential benefits:. Researchers also described PPI impacts on themselves, such as having their identities as clinicians challenged described as opening a different kind of relationship with service users in sharing personal issues.
The CLAHRC was seen as having potential for capacity building, shifting academics to more positive views of PPI, lessons for future projects, building collaboration and co-production.
The main negative cited by PPI contributors was often not knowing what their impact on the project had been. Several stressed the importance of receiving feedback from funding application stage through to dissemination and future project ideas. A CS6 researcher provided summary feedback following meetings, asking for comments on accuracy, making required corrections. SYRF is excited to announce a new program for the summer racing season. These reports will improve sailors' understanding of local wind conditions and will improve the quality of data collected and displayed by on-board instruments.