Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

Leese, Jenny; Kerr, Sheila; McKinnon, Annette; CARRUTHERS, E. J.; Li, Linda; Townsend, Anne

doi:10.2196/jopm.8756

Cited by 7 publications

(8 citation statements)

References 66 publications

(281 reference statements)

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“…Levels of engagement exist on spectrums, varying from patient partners being informed about decisions or patients providing feedback as advisers to collaboration or shared leadership with researchers. [6][7][8][9] In recent decades, this engagement has been widely supported as a means to enhance the relevance of research, with the ultimate aim of supporting translation of research into improved health outcomes and services. 5 6 10-12 strengths and limitations of this study ► The study was initiated, codesigned and coconducted by researchers and patient partners.…”

Section: Introductionmentioning

confidence: 99%

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

et al. 2018

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ObjectiveTo better understand, based on patient partners’ experiences, benefits and risks in patient partner–researcher relationships in a health research setting.DesignQualitative interviews with thematic analysis informed by a relational ethics lens.SettingA multidisciplinary health research centre in Vancouver, Canada. This study was codeveloped by patient partners and researchers at the centre.Participants22 people living with arthritis, with experience as members of a patient advisory board at the research centre from 1 month to 10 years.ResultsWe identified three main themes: (1) Being Heard: Participants had experienced uncomfortable emotions (eg, feelings of insecurity) in their relationships with researchers. The discomfort, however, was minimised by the demonstration of mutual respect in their interactions. Specifically, participants valued environments without a hierarchy between patient partners and researchers, where contributions of each party were considered equally important, and where patients’ voices were heard; (2) Cobuilding social relations: Participants valued building social relations with researchers beyond their expected interactions as partners in research and (3) Adding another spinning plate to an already busy life: Participants valued relationships with researchers who had cocreated environments that minimised the risks of physical and emotional impacts (eg, fatigue, stress, guilt) on them while juggling multiple obligations, priorities and their health.ConclusionsFindings provide valuable insights to guide relationship building between patient partners and researchers. Informed by a relational ethics lens, these findings are a critical step in supporting an ethically sound practice of patient engagement in research that prioritises patients’ perspectives.

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Section: Introductionmentioning

confidence: 99%

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

et al. 2018

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“…Furthering the patient-centric approach is patient-led design (PLD), a design approach that considers patients as partners [ 42 ]. Taking an example from the web 2.0 phenomena of prosumerist crowdsourcing, the approach understands that patients themselves are proactively taking the lead in curating their own health care through digital means, a health care 2.0 [ 40 ].…”

Section: Resultsmentioning

confidence: 99%

The Challenges Toward Real-world Implementation of Digital Health Design Approaches: Narrative Review

Duffy¹,

Christie²,

Moreno³

2022

JMIR Hum Factors

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Background Digital health represents an important strategy in the future of health care delivery. Over the past decade, mobile health has accelerated the agency of health care users. Despite prevailing excitement about the potential of digital health, questions remain on efficacy, uptake, usability, and patient outcome. This challenge is confounded by 2 industries, digital and health, which have vastly different approaches to research, design, testing, and implementation. In this regard, there is a need to examine prevailing design approaches, weigh their benefits and challenges toward implementation, and recommend a path forward that synthesizes the needs of this complex stakeholder group. Objective In this review, we aimed to study prominent digital health intervention design approaches that mediate the digital health space. In doing so, we sought to examine the origins, perceived benefits, contrasting nuances, challenges, and typical use-case scenarios of each methodology. Methods A narrative review of digital health design approaches was performed between September 2020 and April 2021 by referencing keywords such as “digital health design,” “mHealth design,” “e-Health design,” “agile health,” and “agile healthcare.” The studies selected after screening were those that discussed the design and implementation of digital health design approaches. A total of 120 studies were selected for full-text review, of which 62 (51.6%) were selected for inclusion in this review. Results A review identifying the 5 overarching digital health design approaches was compiled: user-centered design, person-based design, human-centered design, patient-centered design, and patient-led design. The findings were synthesized in a narrative structure discussing the origins, advantages, disadvantages, challenges, and potential use-case scenarios. Conclusions Digital health is experiencing the growing pains of rapid expansion. Currently, numerous design approaches are being implemented to harmonize the needs of a complex stakeholder group. Whether the end user is positioned as a person, patient, or user, the challenge to synthesize the constraints and affordances of both digital design and health care, built equally around user satisfaction and clinical efficacy, remains paramount. Further research that works toward a transdisciplinarity in digital health may help break down friction in this field. Until digital health is viewed as a hybridized industry with unique requirements rather than one with competing interests, the nuances that each design approach posits will be difficult to realize in a real-world context. We encourage the collaboration of digital and health experts within hybrid design teams, through all stages of intervention design, to create a better digital health culture and design ethos.

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“…Unequal power differentials are a perennial challenge within participatory research [ 20 , 26 , 30 , 43 ], with academic researchers holding an advantage of greater scholarly knowledge, research experience, and status within research projects [ 44 ]. Peer researchers hold power and expertise in their own right, through lived experience [ 39 , 45 ], but this power may not be broadly acknowledged [ 44 ]. In projects like the Bipolar Youth Action Project, with younger peer researchers, these power inequities may be amplified.…”

Section: Discussionmentioning

confidence: 99%

“…Establishing principles of work is foundational to creating positive working relationships within a peer research group [ 47 ], which in turn can equalize and enhance patient-led research [ 45 ]. The timeline of the Bipolar Youth Action Project allowed consideration towards developing a common workflow that suited the needs of the Youth Action Group.…”

Section: Discussionmentioning

confidence: 99%

Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research

et al. 2020

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Background We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study.

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Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

Cited by 7 publications

References 66 publications

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

The Challenges Toward Real-world Implementation of Digital Health Design Approaches: Narrative Review

Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research

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