The unintended negative consequences of knowledge translation in healthcare: A systematic scoping review

Vaughan, Priya; Boydell, Katherine M.

doi:10.1080/14461242.2022.2151372

Cited by 7 publications

(4 citation statements)

References 59 publications

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“…Some funding bodies demand explicit evidence of patient and public engagement, while others have committed to developing patient‐oriented research. Though researchers and funding bodies appear almost unanimously to champion patient‐oriented research, such a blind and enthusiastic consensus may well prove dangerous and could obscure any unintended consequences, as was the case for the evidence‐based movement 13 as well as knowledge translation more broadly 14 …”

Section: Introductionmentioning

confidence: 99%

The shiny new object: Deconstructing the patient‐oriented paradigm in health sciences

Turcotte

Holmes

Murray

2023

Evaluation Clinical Practice

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Rationale: A 'patient-oriented' research paradigm, also known as patient and public engagement, has infiltrated the field of health sciences and continues to spread. At first blush, it is difficult to reprove anything labelled 'patient-oriented'; however, the patient-oriented paradigm may easily become an ideological 'good', leading to unintended consequences that may well prove more detrimental than beneficial.While patient-oriented research has its roots in more radical forms of patient and public engagement, its recent instantiation betrays its roots and forecloses on more radical forms of engagement, such as critical participatory research.Aim and Objectives: The objective of this article is to deconstruct the patientoriented research narrative and to demonstrate how such a discourse imposes itself as a dominant approach in health sciences.Approach: Following Derrida's deconstructive approach, we bring to light the unexamined presuppositions, false pretences, and presumed 'goodness' and 'naturalness' of patient-oriented discourse.Discussion: By deconstructing the patient-oriented narrative we demonstrate how pre-existing power structures (biomedical, economic, etc.) shape the conduct of the approach and serve to depoliticize the truly participatory aspects of research. Rather than being modelled on the evidence-based movement or seen as its natural 'evolution', patient-oriented research should resist by affirming itself as a radical form that is both participatory and emancipatory.

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Section: Introductionmentioning

confidence: 99%

The shiny new object: Deconstructing the patient‐oriented paradigm in health sciences

Turcotte

Holmes

Murray

2023

Evaluation Clinical Practice

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“…I found it helpful to find solidarity at conferences with other researchers who were coproducing their research, and to view setbacks within our collective, longer-term aim to normalize the democratization of knowledge. I also found co-authors with living and clinical experience were a constant touchstone and encouragement during the isolation and struggle of driving implementation efforts [ 45 ], and was greatly encouraged to find allyship in journal editors who were committed to inclusive and innovative publishing practices which recognize living experience expertise. Production Editor Hannah Reinhardt communicated: I agree with you strongly that the expertise of those with living experience should be acknowledged in the research community, and this is a cause that is of personal importance to me.…”

Section: Resultsmentioning

confidence: 99%

“…Given the aforementioned medical and psychosocial complexity of ABI [1,3,[11][12][13][14][15][16]; the complex nature of health care systems as a complex adaptive system (CAS) [42,43] facing the growing global burden of ABI [1][2][3]; and the complexity of implementation itself [44,45], specifically digital health implementation [35,[46][47][48][49], researchers should anticipate that the implementation, scale-up, and sustainability of the Social Brain Toolkit might be highly complex. It has been suggested that the field of complexity science can offer essential insights to support health [50] and implementation [44] research contending with real-world complexity.…”

Section: Introductionmentioning

confidence: 99%

Digital Health Implementation Strategies Coproduced With Adults With Acquired Brain Injury, Their Close Others, and Clinicians: Mixed Methods Study With Collaborative Autoethnography and Network Analysis

Miao¹,

Morrow²,

Salomon³

et al. 2023

J Med Internet Res

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Background Acquired brain injuries (ABIs), such as stroke and traumatic brain injury, commonly cause cognitive-communication disorders, in which underlying cognitive difficulties also impair communication. As communication is an exchange with others, close others such as family and friends also experience the impact of cognitive-communication impairment. It is therefore an internationally recommended best practice for speech-language pathologists to provide communication support to both people with ABI and the people who communicate with them. Current research also identifies a need for neurorehabilitation professionals to support digital communication, such as social media use, after ABI. However, with >135 million people worldwide affected by ABI, alternate and supplementary service delivery models are needed to meet these communication needs. The “Social Brain Toolkit” is a novel suite of 3 interventions to deliver communication rehabilitation via the internet. However, digital health implementation is complex, and minimal guidance exists for ABI. Objective This study aimed to support the implementation of the Social Brain Toolkit by coproducing implementation knowledge with people with ABI, people who communicate with people with ABI, clinicians, and leaders in digital health implementation. Methods A maximum variation sample (N=35) of individuals with living experience of ABI, close others, clinicians, and digital health implementation leaders participated in an explanatory sequential mixed methods design. Stakeholders quantitatively prioritized 4 of the 7 theoretical domains of the Nonadoption, Abandonment, Scale-up, Spread, and Sustainability (NASSS) framework as being the most important for Social Brain Toolkit implementation. Qualitative interview and focus group data collection focused on these 4 domains. Data were deductively analyzed against the NASSS framework with stakeholder coauthors to determine implementation considerations and strategies. A collaborative autoethnography of the research was conducted. Interrelationships between considerations and strategies were identified through a post hoc network analysis. Results Across the 4 prioritized domains of “condition,” “technology,” “value proposition,” and “adopters,” 48 digital health implementation considerations and 52 tailored developer and clinician implementation strategies were generated. Benefits and challenges of coproduction were identified. The post hoc network analysis revealed 172 unique relationships between the identified implementation considerations and strategies, with user and persona testing and responsive design identified as the potentially most impactful strategies. Conclusions People with ABI, close others, clinicians, and digital health leaders coproduced new knowledge of digital health implementation considerations for adults with ABI and the people who communicate with them, as well as tailored implementation strategies. Complexity-informed network analyses offered a data-driven method to identify the 2 most potentially impactful strategies. Although the study was limited by a focus on 4 NASSS domains and the underrepresentation of certain demographics, the wealth of actionable implementation knowledge produced supports future coproduction of implementation research with mutually beneficial outcomes for stakeholders and researchers. International Registered Report Identifier (IRRID) RR2-10.2196/35080

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“…This reluctance may re ect social desirability bias and added to the positivity bias common in this kind of research (57,72), leading to us identifying predominantly positive outcomes. Challenging outcomes were identi ed in only 32% of reviews on health research partnerships (20), with emotional labour identi ed as the key negative outcome (73). Given the substantial resources required for IKT and the various potential issues in collaborative research or co-production (74) future evaluations should explore appropriate methods to examine this further.…”

Section: Unintended and Unanticipated Effectsmentioning

confidence: 99%

Outcomes of an integrated knowledge translation approach in five African countries: A mixed methods comparative case study

Sell,

Rehfuess,

Osuret

et al. 2024

Preprint

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Background: Integrated knowledge translation (IKT) aims to enhance evidence-informed decision-making in public health and healthcare by establishing continuous relationships between researchers and knowledge users, in particular decision-makers. The Collaboration for Evidence-based Healthcare and Public Health in Africa (CEBHA+) undertook research on non-communicable diseases in Ethiopia, Malawi, Rwanda, South Africa, and Uganda. Alongside the research activities, we implemented an IKT approach, which entailed training and the development and implementation of site-specific IKT strategies. We evaluated these strategies according to a pre-defined programme theory. Methods: Drawing on our published protocol (https://rdcu.be/dyfBP), we interviewed and surveyed CEBHA+ researchers and their decision-making counterparts during two project stages (3/2020-2/2021; 9/2022-5/2023) and collected IKT-related documents. Transcripts and documents were analysed using qualitative content analysis and surveys were analysed descriptively, with subsequent integration, cross-case analysis, and revision of the programme theory. Results: A total of 36 researchers and 19 decision-makers participated in surveys, focus groups and/or interviews, and we collected 92 documents. Relationship-building, capacity-building, and collaborative research were the most proximal intervention outcomes: CEBHA+ researchers and their counterparts built mutual appreciation and partnerships, accessed contacts and networks, and expanded skills in conducting and using research and in IKT. The level of trust between partners varied. Intermediate outcomes were changes in attitudes and knowledge; beyond the conceptualisation in our initial programme theory, researchers substantially increased their understanding of the decision-making context and developed a vision for ‘research impact’. While it was challenging to evaluate distal outcomes, the IKT approach was linked to the production of research perceived as addressing local priorities and being highly applicable and contextualised; and some consideration of evidence among decision-makers. Unintended effects included high opportunity costs associated with undertaking IKT. An unanticipated outcome was the heightened interest of the research funder in policy engagement. Our updated programme theory constitutes a low-level theory for IKT. Conclusion: Whilst this study faced many challenges common to the evaluation of knowledge translation interventions, it presents rich, theory-informed insights into IKT outcomes. These are based on documented IKT activities and participants’ views, particularly in-depth insights of researchers’ experiences with implementing the CEBHA+ IKT approach.

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The unintended negative consequences of knowledge translation in healthcare: A systematic scoping review

Cited by 7 publications

References 59 publications

The shiny new object: Deconstructing the patient‐oriented paradigm in health sciences

The shiny new object: Deconstructing the patient‐oriented paradigm in health sciences

Digital Health Implementation Strategies Coproduced With Adults With Acquired Brain Injury, Their Close Others, and Clinicians: Mixed Methods Study With Collaborative Autoethnography and Network Analysis

Outcomes of an integrated knowledge translation approach in five African countries: A mixed methods comparative case study

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