Co-building a patient-oriented research curriculum in Canada

Bell, Tim; Vat, Lidewij Eva; McGavin, Colleen; Keller, Malori; Getchell, Leah; Rychtera, Anna; Fernández, Nicolás

doi:10.1186/s40900-019-0141-7

Cited by 45 publications

(62 citation statements)

References 5 publications

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“…While it constitutes "one of the most common barriers" to engaging and involving patients as research partners [55], the issue of training was not raised by patient partners in their feedback questionnaires. It is worth noting, however, that the CIHR has developed an introductory workshop on the principles and values of POR called "Foundations in Patient-Oriented Research," which, ideally, is to be co-delivered with the help of a patient partner [56]. Over the life of the CONNECT project, all members of the research management team received this training and two are certified to offer the training.…”

Section: Discussionmentioning

confidence: 99%

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

et al. 2020

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Background Little research describes the everyday challenges and needs of autistic adults. In order to fill this data gap, the CONtiNuity of carE and support for autistiC adulTs (CONNECT) project set out to learn about the health and well-being of autistic adults as well as their service and support needs. To do so, CONNECT welcomed autistic adults and caregivers of autistic adults as members of the research team, alongside researchers, policy-makers, service providers and health professionals. Autistic adults were involved in every stage of the research project and participated in team meetings held several times a year as well as in numerous email exchanges. Methods Two feedback questionnaires were designed for this study: one for the scientific co-researchers and one for the autism community co-researchers (the project’s “patient partners”). Although the surveys varied from one another, they probed respondents to provide critical and constructive comments on issues that were central to their engagement in CONNECT. Four scientific co-researchers and four autism community co-researchers filled out the questionnaires. A comparative analysis was carried out on the responses provided to the open- and closed-ended survey questions as well as on complimentary data collected from the team’s documents. Results CONNECT was seen as a positive experience for both groups. Highlights included: helping tailor and design research and its relevant materials to better suit the needs of the autistic community; establishing relationships and creating long-lasting friendships with other autistic adults; gaining a better understanding of the research process; and forging new connections with regional, national and international stakeholders. Areas for improvement include: establishing clear roles, responsibilities and expectations from the start; outlining a strategy to address unforeseen changes in project leadership; and creating a platform allowing for the involvement and participation of a more representative sample of adults on the autism spectrum. Conclusions While not without its challenges, CONNECT demonstrates that a collaborative multi-stakeholder approach engaging autistic adults can be an effective model for conducting research on adult autism. Autistic adults and their caregivers can make the research process more open and accessible and make its outputs more relevant, useful and meaningful to the wider autistic adult community.

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Section: Discussionmentioning

confidence: 99%

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

et al. 2020

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“…The research team includes researchers (CP, KW) and knowledge users representing health system decision makers in population health (GF), a health care provider (AP), and the non-profit sector (AP). During project development, all team members completed the Foundations in Patient-Oriented Research course offered by the BC SUPPORT Unit [22]. This course introduces knowledge users, patients, and researchers to patient-oriented research, the research process, and strategies for working collaboratively on diverse research teams [23].…”

Section: Methodsmentioning

confidence: 99%

Exploring the perspectives of community members as research partners in rural and remote areas

et al. 2020

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Background: Community engagement in research has the potential to support the development of meaningful health promotion interventions to address health inequities. People living in rural and remote areas face increased barriers to participation in health research and may be unjustly excluded from participation. It is necessary to understand the process of patient and public engagement from the perspective of community members to support partnered research in underserved areas. The aim of this project was to increase understanding on how to include community members from rural and remote areas as partners on research teams. Methods: Using purposive sampling, we completed semi-structured interviews with a representative sample of 12 community members in rural and remote areas of northern British Columbia, Canada. Interviews were audio recorded and transcribed verbatim. Following an integrated knowledge translation approach, an inductive thematic analysis was completed to incorporate researcher and knowledge user perspectives. Results: The factors important to community members for becoming involved in research include: 1) relevance; 2) communication; and 3) empowering participation. The analysis suggests projects must be relevant to both communities and individuals. Most participants stated that they would not be interested in becoming partners on research projects that did not have a direct benefit or value for their communities. Participants expressed the need for clear expectations and clarification of preferred communication mechanisms. Communication must be regular, appropriate in length and content, and written in a language that is accessible. It is essential to ensure that community members are recognized as subject matter experts, to provide appropriate training on the research process, and to use research outcomes to support decision making. Conclusions: To engage research partners in rural and remote communities, research questions and outcomes should be co-produced with community members. In-person relationships can help establish trust and bidirectional communication mechanisms are prudent throughout the research process, including the appropriate sharing of research findings. Although this project did not include community members as research team members or in the co-production of this research article, we present guidelines for research teams interested in adding a patient or public perspective to their integrated knowledge translation teams.

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“…parsed into several sessions), sending presentations, materials and a list of acronyms ahead of time to allow for partners to do their own reading and research, as well as some additional topics of interest. Another potential option may be to co-develop and produce educational sessions with a patient partner, as done by Bell et al for a patient-oriented research curriculum [26]. TH also noted that reflection and iterative revision of the terms of reference, and consistently communicating how patient partner contributions were incorporated into the project (and any associated outcomes) are essential to providing a sense of accomplishment.…”

Section: Challenges and Areas For Improvementmentioning

confidence: 99%

Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials

Foster

Fergusson

Hawrysh³

et al. 2020

Res Involv Engagem

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Aim Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the development of a clinical trial protocol to assess a new immunotherapy for blood cancer (chimeric antigen receptor T-cell therapy, CAR-T cell therapy). Methods Our team developed a clinical trial protocol by working with patient partners from inception. Two patient partners with lived blood cancer experience were identified through referrals from our team’s professional network and patient organization contacts. Our patient partners were onboarded to the team and engaged in several studies conducted to develop the clinical trial protocol, including a systematic review of the existing literature on the therapy, patient interviews and a survey to obtain perspectives on barriers and enablers to participating in the trial, an early economic analysis, and a retrospective cohort study. Results Engaging patient partners enhanced our research in ways that would not have otherwise occurred. By selecting patient important outcomes for data collection, our partners helped flag that quality of life and health utility measures have not been reported in previous CAR-T cell therapy trials for blood cancer. Our partners also co-developed a non-technical summary of the systematic review that summarized results in an accessible manner. Our patient partners reviewed interview and survey questions, to improve the language and appropriateness; provided recruitment suggestions; and provided a patient perspective on the results, thereby confirming the importance of findings. Input was also obtained on costs for the early economic analysis. Our patient partners identified costs that may be a burden to both patients and caregivers during a trial and helped to confirm that the overall structure of the economic model reflected the patient care pathway. Our patient partners also shared their diagnosis and treatment stories, which helped to provide the research team with insight into this experience. Conclusions Contributions by our patient partners were invaluable to each component study, as well as the overall development of the trial protocol. We plan to use this approach in the future in order to meaningfully engage patients in the development of other clinical trials; we also hope that by reporting our methods this will help other research teams to do the same. Trial registration Affiliated with the development of NCT03765177.

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Co-building a patient-oriented research curriculum in Canada

Cited by 45 publications

References 5 publications

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

“We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project

Exploring the perspectives of community members as research partners in rural and remote areas

Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials

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