Why and how to use patient-oriented research to promote translational research.

Sunderji, Nadiya; Angl, Emily Nicholas; Polaha, Jodi; Gao, Chloe Y.

doi:10.1037/fsh0000405

Cited by 12 publications

(13 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…the USA and Canada): putting patients and service users at the heart of research teams, using patients as active partners and participants to ensure the relevance and applicability of applied research findings. 70 Nonetheless, despite these pockets of innovation, the field of knowledge mobilisation, in general, appears to have not yet been successful in finding a place for the patient voice. 3,4,71 We used the literature review and empirical work in this study to examine this challenge, with the aim of exploring and describing in detail examples of good practice in involving patients and the public in embedded knowledge co-production initiatives.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

Optimising the impact of health services research on the organisation and delivery of health services: a mixed-methods study

Marshall

Davies

Ward

et al. 2022

Health Soc Care Deliv Res

View full text Add to dashboard Cite

Background The limitations of ‘knowledge transfer’ are increasingly recognised, with growing interest in ‘knowledge co-production in context’. One way of achieving the latter is by ‘embedding’ researchers in health service settings, yet how to deliver such schemes successfully is poorly understood. Objectives The objectives were to examine the nature of ‘embedded knowledge co-production’ and explore how embedded research initiatives can be designed more effectively. Design The study used four linked workstreams. Workstream 1 involved two parallel literature reviews to examine how ‘knowledge co-production’ and ‘embedded research’ are conceptualised, operationalised and discussed. In workstream 2, a scoping review of exisiting or recent ‘embedded researcher’ schemes in UK health settings was carried out. Workstream 3 involved developing four in-depth case studies on such schemes to understand their mechanisms, effectiveness and challenges. In workstream 4, insights from the other workstreams were used to provide recommendations, guidance and templates for the different ways embedded co-production may be framed and specified. The overall goal was to help those interested in developing and using such approaches to understand and address the design choices they face. Setting Embedded research initiatives in UK health settings. Data sources Data were sourced from the following: analysis of the published and grey literature (87 source articles on knowledge co-production, and 47 published reports on extant embedded research initiatives), documentation and interviews with key actors across 45 established embedded research initiatives, in-depth interviews and site observations with 31 participants over 12 months in four intensive case studies, and informal and creative engagement in workshops (n = 2) and with participants in embedded research initiatives who joined various managed discussion forums. Participants The participants were stakeholders and participants in embedded research initiatives. Results The literature reviews from workstream 1 produced practical frameworks for understanding knowledge co-production and embedded research initiatives, which, with the scoping review (workstream 2), informed the identification and articulation of 10 design concerns under three overarching categories: intent (covering outcomes and power dynamics), structures (scale, involvement, proximity and belonging) and processes (the functional activities, skills and expertise required, nature of the relational roles, and the learning mechanisms employed). Current instances of embedded research were diverse across many of these domains. The four case studies (workstream 3) added insights into scheme dynamics and life cycles, deepening understanding of the overarching categories and showing the contingencies experienced in co-producing knowledge. A key finding is that there was often a greater emphasis on embeddedness per se than on co-production, which can be hard to discern. Finally, the engaging and influencing activities running throughout (workstream 4) allowed these research-rooted insights to be translated into practical tools and resources, evidenced by peer-reviewed publications, for those interested in exploring and developing the approach. Conclusions Embedded research has a strong underpinning rationale, and more is becoming known about its design and management challenges. The tools and resources developed in this project provide a coherent evidence-informed framework for designing, operationalising and managing such schemes. It cannot yet be said with clarity that the potential benefits of embedded research are always deliverable, nor what the cost would be. Future work With the means to describe and categorise different types of embedded research initiatives, more evaluative work is now needed to examine the relative merits and costs of different designs. Funding This project was funded by the National Institute for Health Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 3. See the NIHR Journals Library website for further project information.

show abstract

Section: Patient and Public Involvementmentioning

confidence: 99%

Optimising the impact of health services research on the organisation and delivery of health services: a mixed-methods study

Marshall

Davies

Ward

et al. 2022

Health Soc Care Deliv Res

View full text Add to dashboard Cite

show abstract

“…Further complicating the issue is that patient advocates are often people with chronic illness or disabilities who may receive a range of government pensions that they could lose if their earnings exceeded a certain (usually very low) threshold. The researchers leading this project wanted to acknowledge the value of the consumers’ lived experience and experiential knowledge 26. Thus, in addition to establishing an inclusive programme of research emphasising mutual capacity building19 27 and providing catered tea breaks to encourage networking,6 researchers followed the HCNSW recommendation28 and offered financial compensation in form of shopping vouchers commensurate with the longitudinal nature of the engagement and duration of CRG meetings 6.…”

Section: Key Innovations For Consumer Engagement In Health Services Rmentioning

confidence: 99%

Interaction and innovation: practical strategies for inclusive consumer-driven research in health services

Dahm

Brown

Martin³

et al. 2019

BMJ Open

View full text Add to dashboard Cite

IntroductionDespite advances in the co-creation of clinical research involving consumers in the last few decades, consumer engagement in health services research generally remains inconsistent and is too often treated as a perfunctory exercise.ObjectiveDrawing on a health services study on diagnostic test result management, communication and follow-up, we: (1) outline practical strategies used to enhance the contribution of health consumer representatives across all stages of health services research, including active involvement in prioritising objectives for data analysis and participating in data analysis and the dissemination of findings; and (2) describe the impact of continued engagement of consumers on the programme of research, the interpretation of findings and their translational potential.Key innovationsKey enabling innovations for engagement included: (1) planned opportunities for long-term consumer involvement across all stages of the research process from conception to dissemination; (2) enhanced consumer engagement capacity; (3) purposeful recruitment of appropriately trained consumers; (4) provision of support structures for active consumer involvement in research design, analysis and write-up; and (5) financial support for consumer involvement.Impact/ConclusionEnhancing consumer contribution and establishing inclusive research design requires a negotiated, interactive, meaningful and transparent process. As a collaborative approach, consumer-driven research involvement offers opportunities for new, often unexpected or unexplored perspectives to feature across the whole research process. In a move away from tokenistic consumer involvement, consumers and researchers who participated in this novel and immersive research project identified inclusive research as a powerful tool to enhance health services research and its translation into effective policy.

show abstract

“…A significant challenge in health research is the translation of knowledge acquired from the research process to its implementation in evidence-based care [10]. Patient Oriented Research (POR) can help to bridge the gap between research and care, by bringing patient partners into the research process to contribute their lived experiences with their clinical condition and treatment interventions [11]. Developing accessible material that effectively shares information on potential treatment interventions is necessary to empower patients to make informed decisions on their care.…”

Section: Introductionmentioning

confidence: 99%

A patient-oriented analysis of pain side effect: A step to improve the patient's experience during rTMS?

et al. 2021

View full text Add to dashboard Cite

Background: Repetitive transcranial magnetic stimulation (rTMS) is an efficacious and well-tolerated intervention for treatment-resistant depression (TRD). A novel rTMS protocol, intermittent theta burst stimulation (iTBS) has been recently implemented in clinical practice, and it is essential to characterize the factors associated to pain and the trajectory of pain of iTBS compared to standard rTMS protocols. Objective: We aimed to characterize the side effect profile and the pain trajectories of High-Frequency Left (HFL) and iTBS in TRD patients in the THREE-D trial. We also investigated factors associated to pain and the relationship between pain and clinical outcomes. Methods: 414 patients were randomized to either HFL or iTBS. Severity of pain was measured after every treatment. General Estimating Equation was used to investigate factors associated with pain. Latent class linear mixed model was used to investigate latent classes of pain trajectories over the course of rTMS. Results: Higher level of pain was associated with older age, higher stimulation intensity, higher anxiety, female, and non-response. The severity of pain significantly declined over the course of treatments with a steeper decrease early on in the course of the treatment in both protocols, and four latent pain trajectories were identified. The less favorable pain trajectories were associated with non-response and higher stimulation intensity. Conclusions: HFL and iTBS were associated with similar factors and pain trajectories, although iTBS was more uncomfortable. Response to rTMS was associated with less pain and more favorable pain trajectories furthering the evince base of overlapping neurobiological underpinnings of mood and pain. We translated these results into patient-oriented information to aid in the decision-making process when considering rTMS.

show abstract

Why and how to use patient-oriented research to promote translational research.

Cited by 12 publications

References 30 publications

Optimising the impact of health services research on the organisation and delivery of health services: a mixed-methods study

Optimising the impact of health services research on the organisation and delivery of health services: a mixed-methods study

Interaction and innovation: practical strategies for inclusive consumer-driven research in health services

A patient-oriented analysis of pain side effect: A step to improve the patient's experience during rTMS?

Contact Info

Product

Resources

About