Engaging with patients in research on knowledge translation/implementation science methods: a self study

MacLeod, Martha; Leese, Jenny; Garraway, Leana; Oelke, Nelly D.; Munro, Sarah; Bailey, Sacha; Hoens, Alison M.; Loo, Sunny; Valdovinos, Ana; Wick, Ursula; Zimmer, Peter; Li, Linda

doi:10.1186/s40900-022-00375-5

Cited by 5 publications

(4 citation statements)

References 39 publications

(62 reference statements)

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“…We also ascertained the partnership needs for success such as having a common purpose, research interest, an engagement plan, etc. 40 Also evident in our findings is the need for time early in the process to build and sustain relationships, and for navigating challenges throughout the research, reiterating what is said in the literature. 6 , 40 , 41 …”

Section: Discussionsupporting

confidence: 64%

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Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Marshall,

Suryaprakash,

Bryan

et al. 2023

Journal of the Canadian Association of Gastroenterology

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Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

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Section: Discussionsupporting

confidence: 64%

“… 40 Also evident in our findings is the need for time early in the process to build and sustain relationships, and for navigating challenges throughout the research, reiterating what is said in the literature. 6 , 40 , 41 …”

Section: Discussionsupporting

confidence: 64%

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Marshall,

Suryaprakash,

Bryan

et al. 2023

Journal of the Canadian Association of Gastroenterology

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“…These tensions are well described in the PAR and patient involvement literature [ 4 , 9 , 29 , 30 ]. The literature also shows that establishing a shared vision about the goals of patient engagement and respective roles is crucial, and honesty and trust are key to effective patient involvement in research [ 31 ]. We assume that timely reflection on this issue to appreciate the nature of the tensions and to better understand what happens in the professional boundary area would have strengthened the programme development process [ 32 ].…”

Section: Discussionmentioning

confidence: 99%

Patient‐Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation

Maas,

Veltman,

van der Wees

et al. 2024

Health Expectations

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BackgroundThe role of patients in healthcare research is slowly evolving, although patient roles in the research process are limited. This paper reports on a patient‐led research project aiming to develop a musical hearing training programme for patients with a cochlear implant (CI): the Musi‐CI programme. A CI is an inner ear prosthesis that allows people with severe hearing loss to hear. However, while speech can be understood, CI users cannot fully enjoy music or feel aversion to it. The Musi‐CI programme aims to reduce this music aversion to ultimately improve music enjoyment and social participation. The development of the Musi‐CI programme was supported by a consortium of professionals in CI rehabilitation and research.The aim of this paper is to describe and evaluate the Musi‐CI programme development process and its impact on professional CI rehabilitation and research.MethodsProgramme development was described using a 3‐layered process model of action research, distinguishing the CI user process, the healthcare professional process and the research process. To evaluate perceptions on the programme development process, consortium partners provided written comments and participated in a reflexive evaluation session that was video‐recorded. Reflexive evaluation aims for collective learning and strengthening collaboration among participants. Written comments and video data were analysed using template analysis.ResultsThe involvement of an expert by experience was perceived as challenging but rewarding for all consortium partners, opening up new perspectives on CI‐rehabilitation practice and research. Data analysis revealed two themes on the programme development process, professional space and acknowledgement, and two themes on the outcomes on CI rehabilitation and research: critical reflection and paradigm shift.ConclusionExperts by experience represent a different knowledge domain that may contribute to change in rehabilitation and research.Patient or Public ContributionThe development of the programme was initiated by a professional musician and CI user who organized the funding, had a leading role throughout the research process, including the write‐up of the results, and co‐authored this paper.

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“…There is also little literature about involving patients in knowledge translation and implementation science methodological research [ 2 , 64 ]. The GRIPP 2 Short Checklist [ 65 ] is appended in Additional file 1 .…”

Section: Discussionmentioning

confidence: 99%

Exploring the intersection of hermeneutics and implementation: a scoping review

et al. 2023

Self Cite

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Background An enduring challenge remains about how to effectively implement programs, services, or practices. Too often, implementation does not achieve its intended effectiveness, fidelity, and sustainability, even when frameworks or theories determine implementation strategies and actions. A different approach is needed. This scoping review joined two markedly different bodies of literature: implementation and hermeneutics. Implementation is usually depicted as focused, direct, and somewhat linear, while hermeneutics attends to the messiness of everyday experience and human interaction. Both, however, are concerned with practical solutions to real-life problems. The purpose of the scoping review was to summarize existing knowledge on how a hermeneutic approach has informed the process of implementing health programs, services, or practices. Methods We completed a scoping review by taking a Gadamerian hermeneutic approach to the JBI scoping review method. Following a pilot search, we searched eight health-related electronic databases using broadly stated terms such as implementation and hermeneutics. A diverse research team that included a patient and healthcare leader, working in pairs, independently screened titles/abstracts and full-text articles. Through the use of inclusion criteria and full-team dialogue, we selected the final articles and identified their characteristics, hermeneutic features, and implementation components. Results Electronic searches resulted in 2871 unique studies. After full-text screening, we retained six articles that addressed both hermeneutics and implementing a program, service, or practice. The studies varied widely in location, topic, implementation strategies, and hermeneutic approach. All addressed assumptions underpinning implementation, the human dimensions of implementing, power differentials, and knowledge creation during implementation. All studies addressed issues foundational to implementing such as cross-cultural communication and surfacing and addressing tensions during processes of change. The studies showed how creating conceptual knowledge was a precursor to concrete, instrumental knowledge for action and behavioral change. Finally, each study demonstrated how the hermeneutic process of the fusion of horizons created new understandings needed for implementation. Conclusions Hermeneutics and implementation have rarely been combined. The studies reveal important features that can contribute to implementation success. Implementers and implementation research may benefit from understanding, articulating, and communicating hermeneutic approaches that foster the relational and contextual foundations necessary for successful implementation. Trial registration The protocol was registered at the Centre for Open Science on September 10, 2019. MacLeod M, Snadden D, McCaffrey G, Zimmer L, Wilson E, Graham I, et al. A hermeneutic approach to advancing implementation science: a scoping review protocol 2019. Accessed at osf.io/eac37.

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Engaging with patients in research on knowledge translation/implementation science methods: a self study

Cited by 5 publications

References 39 publications

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Patient‐Led Research to Develop a Training Programme for Restoring Musical Joy in Cochlear Implant Recipients: A Reflexive Process Evaluation

Exploring the intersection of hermeneutics and implementation: a scoping review

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