Dataset Information

Do not forget the professional--the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.

ABSTRACT:

Background

The FIRST model describes five practical components that enable equal collaboration between patients and professionals in clinical rheumatology research: Facilitate, identify, respect, support and training.

Objective

To assess the value of this model as a framework for setting up and guiding the structural involvement of people with arthritis in health research.

Method

The FIRST model was used as a framework during the guidance of a network of patient research partners and clinical rheumatology departments in the Netherlands. A 'monitoring and evaluation' approach was used to study the network over a period of 2 years. Data were collected using mixed methods and subjected to a directed content analysis. The FIRST components structured the data analysis. During monitoring meetings, refined and additional descriptors for each component were formulated and added if new items were found.

Results

The FIRST model helps to guide and foster structural partnerships between patients and professionals in health research projects. However, it should be broadened to emphasize the pivotal role of the principal investigator regarding the facilitation and support of patient research partners, to recognize the requirements of professionals for training and coaching and to capture the dynamics of collaboration, mutual learning processes and continuous reflection.

Conclusion

FIRST is a good model to implement sustainable relationships between patients and researchers. It will benefit from further refinement by acknowledging the dynamics of collaboration and including the concept of reflection and relational empowerment. The reciprocal character of the five components, including training and support of researchers, should be incorporated.

SUBMITTER: de Wit MP

PROVIDER: S-EPMC5060802 | biostudies-literature | 2015 Aug

REPOSITORIES: biostudies-literature

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Publications

Do not forget the professional--the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.

de Wit Maarten P T MP Elberse Janneke E JE Broerse Jacqueline E W JE Abma Tineke A TA

Health expectations : an international journal of public participation in health care and health policy 20130131 4

<h4>Background</h4>The FIRST model describes five practical components that enable equal collaboration between patients and professionals in clinical rheumatology research: Facilitate, identify, respect, support and training.<h4>Objective</h4>To assess the value of this model as a framework for setting up and guiding the structural involvement of people with arthritis in health research.<h4>Method</h4>The FIRST model was used as a framework during the guidance of a network of patient research pa ...[more]

PMID: 23363240

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Project description:BackgroundEmpirical evidence for effective patient-researcher collaboration in basic research is lacking. This study aims to explore good working models and impact of patient involvement in basic rheumatology research and to identify barriers and facilitators.MethodA responsive evaluation of a three years' participatory research project in a basic and translational laboratory research setting. Several working models for patient involvement were piloted and adapted if considered necessary. The study comprised surveys, interviews, training days, meeting reports, Q-sort exercises and field notes, and regular reflective team sessions with participant involvement. A qualitative analysis using thematic coding focused on impact, barriers and facilitators.ResultsThirteen patient research partners (PRPs) and fifteen basic researchers participated. PRPs experienced basic research as fascinating though complex to understand. Their initial role was mostly listening and asking questions. After several meetings equal and more meaningful relationships emerged. Researchers' motivation increased by listening to patient stories. They learned about disease impact on daily life and to speak in understandable language. This enabled PRPs to learn about research and the pathogenesis of their disease. It inspired them to stay involved over a longer period. After three years, both parties preferred 1:1 contacts over collaboration in team meetings. A common language and respectful communication were important facilitators. Limitations were the complexity of disease processes for patients and the time commitment for researchers. Impact was reported as a sincere dialogue with multiple advantages for patients and researchers, and to a lesser extent than expected on the research process and outcomes.ConclusionPatient involvement contributes to motivating young scientists in performing basic research projects. Patients and researchers valued the benefits of long-term one-on-one collaboration. These benefits outweigh the lack of direct impact on basic research goals and performance. A plain language summary of the abstract is available (as) online Additional file 1.

Project description:BackgroundRheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project.MethodsTwo surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis.ResultsResearcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: 'PRP contributions', 'Experiences of PPI', 'Impact of PPI on RTCure', and 'How PPI can be improved'. Two additional themes from the Researcher Survey were 'Impact of PPI on researchers' and 'Influence on Future Projects', and from the PRP Survey were 'Impact of PPI on PRPs' and 'Engagement with PRPs'.ConclusionPPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.

Project description:BackgroundExisting evidence suggests that clinician and organisation engagement in research can improve healthcare performance. With the increase in allied health professional (AHP) research activity, it is imperative for healthcare organisations, clinicians, managers, and leaders to understand research engagement specifically within allied health fields. This systematic review aims to examine the value of research engagement by allied health professionals and organisations on healthcare performance.MethodsThis systematic review had a two-stage search strategy. Firstly, the papers from a previous systematic review examining the effect of research engagement in healthcare were screened to identify papers published pre-2012. Secondly, a multi-database search was used to conduct a re-focused update of the previous review, focusing specifically on allied health to identify publications from 2012-2021. Studies which examined the value of allied health research engagement on healthcare performance were included. All stages of the review were conducted by two reviewers independently. Each study was assessed using the appropriate Joanna Briggs Institute critical appraisal tool. A narrative synthesis was completed to analyse the similarities and differences between and within the different study types.ResultsTwenty-two studies were included, comprising of mixed research designs, of which six were ranked as high importance. The findings indicated that AHP research engagement appears related to positive findings in improvements to processes of care. The review also identified the most common mechanisms which may link research engagement with these improvements.DiscussionThis landmark systematic review and narrative synthesis suggests value in AHP research engagement in terms of both processes of care and more tentatively, of healthcare outcomes. While caution is required because of the lack of robust research studies, overall the findings support the agenda for growing AHP research. Recommendations are made to improve transparent reporting of AHP research engagement and to contribute essential evidence of the value of AHP research engagement.Trial registrationThis systematic review protocol was registered with the international prospective register of systematic reviews, PROSPERO (registration number CRD42021253461 ).

Project description:OBJECTIVES: Continuing professional development (CPD) is a novel approach to increase professional knowledge and skills. The aim of this study is to explore participants' characteristics and to understand participants' views on two rapid review courses (RRCs) as part of CPD program, and to assess healthcare providers' views about the use of internet for accessing medical information. METHODS: Data were collected from 150 participants who attended an RRC in Nephrology and Rheumatology as part of an ongoing CME program. RESULTS: Participants' response rate was 92% and 84.4% in Nephrology and Rheumatology RRCs, respectively. Participants' Mean Age±SD were 39±2.1 and 41±2.1 years in the Nephrology and Rheumatology courses, respectively. Demographic variables, i.e., age, gender, and specialization showed a significant (p<0.01) impact on the learning objectives of the program. Further, participants reported that the course material had a significant (p<0.02) impact on their knowledge. Finding new medical information was the primary motive to search the internet among all participants. About half of the subjects reported knowledge of their preferred medical education sites and had access at their clinical setup. Barriers to internet use included lack of specific information, difficulty to download contents, and excessive material. Professional association websites, online journals, and CME programs were the most frequently searched sources of information. Most of the subjects reported significant (p<0.02) barriers to find medical resources on the internet and to adequately utilize the currently available medical search engines available in the healthcare system. CONCLUSION: A discipline specific and integrated CPD program may have provided dual benefit such as accredited CME hours and a significant change in the participants' knowledge. There is a need to increase Internet accessibility and capacity in the current healthcare facilities. Future CPD studies should include measuring participants' knowledge and skills "pre and post" course delivery, and a detailed evaluation of the course program.

Project description:BackgroundPatient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school.MethodsThe study was conducted between October 2019 and January 2020 using Gradinger's value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems.ResultsTwelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to 'give back' and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness.ConclusionsThree areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.

Dataset Information

Do not forget the professional--the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.

Background

Objective

Method

Results

Conclusion

Publications

Do not forget the professional--the value of the FIRST model for guiding the structural involvement of patients in rheumatology research.

Similar Datasets

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