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Strengths

The multiple data collection methods (interviews, focus groups, survey, login information) allowed us to triangulate findings, which helped interpretation of quantitative findings. Collection of data at different time points allowed us to track how attitudes to and use of PRISM changed over time.

Using the NPT framework to interpret interview data enabled us to fully consider the stages and actions associated with implementing an intervention in a health-care setting to increase our understanding of the ways they responded in this study.

Limitations

Interviews with policy and health board staff about the story of PRISM took place some years after PRISM was developed, potentially affecting their memory of events because of the time period and role changes. In most cases, we talked to only one respondent from participating general practices. This was usually the GP responsible for leading use of PRISM, and their knowledge and use of PRISM was not always shared by other staff. In a minority of practices, the PRISM lead GP changed between the three data collection points, because they retired or moved practice.

We were unable to gather the views of community health staff after the tool was implemented, as most staff declined to attend a follow-up focus group because their roles had changed. Only one health services manager agreed to be interviewed at the end of the study.

General practitioners taking part in the PRISMATIC trial volunteered for the study. In interviews, several identified themselves as interested in, or supportive of, research and wanted to contribute to knowledge generation by participating. They were therefore likely to be atypical of many GPs and their response to PRISM may not be that of other members of their profession.

STAKEHOLDER VIEWS: THE PREDICTIVE RISK STRATIFICATION MODEL IMPLEMENTATION AND USE

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Chapter 7 Service user involvement

I

n line with good practice, service user involvement in the PRISMATIC trial was intended from the outset and throughout. A summary of service user involvement can be found in Table 42.

TABLE 42 Summary of service user involvement in the PRISMATIC trial

Type of involvement

activity Role Process Comments

Supporting service user involvement

Service users were actively involved across all activities associated with delivering the PRISMATIC trial

Information, guidance, honoraria, expenses and briefing sessions were provided to facilitate active involvement

Named individual (BAE) supported the trial manager (MRK) to ensure active involvement. In addition, provided single contact for service users

Service users recruited through the SUCCESS group: membership of this group gave access to mutual support and a wider service user perspective Mid-study meeting held to review involvement and further support needed

Long time scales enabled strong relationships across all research partners

RMG meetings

Two service users were invited to be members of the RMG, and contributed to all decisions about managing and undertaking the study

24 meetings scheduled (2010–16) Two service users were at almost all meetings; just one meeting took place without a service user member present

One individual remained involved throughout the study; the second place was taken by four different individuals

Individuals received induction before starting role and were offered pre-meeting briefings Service user perspectives were sought at all stages, especially when developing patient consent process, preparing patient information and questionnaires, holding a prize draw for questionnaire respondents, interpreting final results TSC meetings Two service users were

invited to be members of the six-person TSC, and provided independent study scrutiny and oversight

Five meetings held (2013–15) Three out of the five meetings attended by at least one service user

Service users received training before joining the TSC which covered the role of a TSC and provided background about the PRISMATIC trial

Opportunity provided for briefing before each TSC meeting Qualitative

analysis and write-up of results

One service user was invited to the qualitative subcommittee to develop coding framework and review drafts of qualitative results

Two meetings held (2013–14) Both meetings were attended by one service user and three researchers. All contributed to e-mail discussions following meetings and reviewed drafts of the results

TABLE 42 Summary of service user involvement in the PRISMATIC trial (continued ) Type of

involvement

activity Role Process Comments

Writing events To contribute service user perspective to all discussions about communications and dissemination

Six meetings held (2012–15) Two service users were invited to each meeting: at least one attended each meeting

Workshop sessions held at two meetings to consider potential study outputs for service user audience Discussions held about how to describe the PRISMATIC trial service user involvement in final report Service users contributed to all discussions as equal team members and agreed publications plan Publicity and

dissemination

Service users contributed to publicity and dissemination materials about PRISMATIC

Service users reviewed and contributed to seven PRISMATIC newsletters, aimed at participating GP practices and health services managers

One service user contributed to edition 6, writing about her experience of being involved in research

One service user contributed to edition 7, explaining how risk prediction tools can help patients, especially those with early-stage chronic illness who can expect their condition to deteriorate

Two newsletters contained articles by GP champions linked to the research team

The SUCCESS group members advised on, and reviewed, the patient information pages of the PRISMATIC trial website Service users involved in

publicising PRISMATIC to patients

Service users suggested production and distribution of a poster about the PRISMATIC trial, for display in GP practices, to inform patients about the study

One service user and one GP champion were interviewed by a TV crew about the study. The package was screened on the BBC Wales evening news

Service users were co-authors on all study outputs

Service users co-authored conference presentations

Service users co-authored journal publication reporting baseline qualitative findings (Porter et al.)84 Further bid

development

Service users collaborated in developing further research about risk prediction

Service users contributed through research development groups and reviewing draft applications

Seven service users attended a research discussion group to consider risk prediction research priorities: outcome informed future bid development

At least one service user was named as a co-applicant on all large-scale research proposals linked to use of risk prediction tools and proactive care

SERVICE USER INVOLVEMENT

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Recruiting and supporting service users to be involved in the