Building patient-oriented research capacity by co-designing a research handbook for patient partners.
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ABSTRACT:
SUBMITTER: McCutcheon T
PROVIDER: S-EPMC9258416 | biostudies-literature | 2022 Nov
REPOSITORIES: biostudies-literature
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Building patient-oriented research capacity by co-designing a research handbook for patient partners.
McCutcheon Tess T LaPlante James J Bibeau Christine C Cooper Lynn L Hammond Jessika J Helmer-Smith Mary M Houghton Deanne D Burns Katharina Kovacs KK Mastin Donald D Turner Kevin K Liddy Clare C
Patient education and counseling 20220706 11
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Project description: Not available
| S-EPMC6369555 | biostudies-literature
Project description:BackgroundIn the past decade, patient-oriented research (POR) has been at the forefront of healthcare research in Canada because it has the potential to make research more meaningful and relevant to patient needs. Despite this growing emphasis on and expectation to conduct POR, there is limited guidance about how to apply POR in practice. To address this capacity building need, the Knowledge Translation (KT) Program and patient partners co-designed, delivered, and evaluated Partners in Research (PiR), a 2-month online course for patients and researchers to collectively learn how to conduct and engage in POR.MethodsPiR was delivered to 4 cohorts of patients and researchers between 2017 and 2018. For each cohort, we evaluated the impact of the course on participants' knowledge, self-efficacy, intentions, and use of POR using surveys at 3 time points: baseline, post-course and 6-months post-course. We also monitored the process of course design and delivery by assessing implementation quality of the PiR course. Participants were asked to rate their satisfaction with course format, course materials, quality of delivery and their level of engagement via a 7-point Likert scale in the post-course survey.ResultsA total of 151 participants enrolled in the PiR course throughout the 4 cohorts. Of these, 49 patients and 33 researchers (n = 82 participants) consented to participate in the course evaluation. Process and outcome evaluations collected over a 9-month period indicated that participation in the PiR course increased knowledge of POR concepts for patients (p < .001) and for researchers (p < .001) from pre-course to post-course timepoints. Likewise, self-efficacy to engage in POR increased from baseline to post-course for both patients (p < .001) and researchers (p < .001). Moreover, participants reported high levels of satisfaction with content, delivery and interactive components of the course.ConclusionsThe PiR course increased capacity in POR for both researchers and patients. This work enhances our understanding of how to design useful and engaging education opportunities to increase patient and researcher capacity in POR.
| S-EPMC8556807 | biostudies-literature
Project description:Building trusting relationships is critical to the success of patient-oriented research. However, in high-secure forensic mental health settings, distrust, discrimination, and restrictive practices pose unique barriers to building relationships. This commentary explores the challenges, strategies, and lessons learned in fostering meaningful connections with forensic patients at a high-secure hospital. Initially focused on assessing readiness to conduct patient-oriented research, the team pivoted to relationship building, guided by the mentorship of peer researchers and patient advocates. Navigating institutional complexities, the team adopted a patient-centered approach informed by the principles of respect and human connection. Key strategies included shadowing experienced patient advocates embedded within the hospital, attending patient community meetings, and engaging in informal interactions with patients. These efforts enabled the team to move from observing interactions to engaging in patients' daily lives through shared experiences. A major milestone was the successful planning and execution of a knowledge sharing event that brought together patients, staff, researchers, and external stakeholders to explore how to put patient-oriented research approaches into practice. Despite the progress, the team faced many challenges, including skepticism from staff and patients, and disruptions inherent to a high-secure environment. The commentary discusses critical lessons for overcoming these challenges, including the importance of patience, adaptability, and respecting boundaries. It emphasizes the intrinsic value of building relationships beyond research outcomes and advocates for incorporating diverse team expertise to foster trust and authentic connections. The commentary also highlights the perspectives of a current forensic patient and co-author, who shares how the team's efforts made him feel valued as a person. His reflections add to the narrative by highlighting the impact of respectful interactions on relationships. By sharing these insights, this commentary aims to inspire other research teams to prioritize relationship building as a foundational step toward meaningful participatory research in forensic mental health care.
| S-EPMC11883941 | biostudies-literature
Project description:The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.
| S-EPMC4078295 | biostudies-literature
Project description:BackgroundPatient-oriented research (POR) is a specific application of participatory research that promotes active patient engagement in health research. There is a growing concern that people involved in POR do not reflect the diversity of the population such research aims to serve, but are rather those more 'easily' engaged with institutions, organizations and society. Indigenous peoples are among such groups generally underrepresented in POR. The "Indigenous patient partners platform project" was a small-scale initiative aimed to address the issue of the underrepresentation of Indigenous people in patient-oriented research by recruiting, orienting and supporting Indigenous patient partners in Québec (Canada). This article reports on the findings of an evaluation conducted at the end of the project to garner lessons and identify strategies for engaging Indigenous patient partners in patient-oriented research.MethodsThe evaluation of this initiative used a case study design hinging on documentary analysis and committee member interviews. Project documents (n = 29) included agendas and meeting minutes, support documents from the orientation workshop and workshop evaluations, and tools the committee developed as part of the project. Interview participants (n = 6) were patients and organizational partners. Thematic analysis was performed by two members of the research team. Patient partners actively contributed to validating the interpretation of result and knowledge translation.ResultsResults point to four key components of Indigenous patient partner engagement in POR: initiation of partnership, interest development, capacity building and involvement in research. Specific lessons emphasize the importance of community connections in recruiting, sustaining and motivating patient partners, the need to be flexible in the engagement process, and the importance of consistently valuing patient partner contributions and involvement.ConclusionsThere is a need to engage Indigenous patient partners in POR to ensure that healthcare practices, policies and research take their particular needs, stories and culture into account. While results of this evaluation are generally consistent with the existing literature on patient engagement, they offer additional insight into how to effectively engage Indigenous patient partners in research, which might also be relevant to the involvement of other marginalized populations who have been historically and systemically disempowered.
| S-EPMC7376932 | biostudies-literature
Project description:IntroductionCanadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a pan-Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach.MethodsTo capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach.ResultsWe included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use).ConclusionsOur findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient-oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network.Patient or public contributionThis project was conceived in collaboration with a Can-SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co-designed the study's protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings.
| S-EPMC10010076 | biostudies-literature
Project description:BackgroundParticipating in clinical trials is a metric of high-quality cancer care and improves survival. However, Black individuals with cancer are less likely to be enrolled in clinical trials and experience a disproportionate burden of cancer mortality compared to Whites. Patient-engaged research is one potential strategy to address racial inequities in clinical trials, but little is known about best practices for engaging Black individuals and communities impacted by cancer in research partnerships.MethodsWe used a community engaged research approach to establish a patient advisory council (PAC) representative of the patient population served by a safety net hospital cancer center. We outline the process of establishing the PAC and the lessons learned.ResultsThe inaugural PAC included 7 members representative of the cancer center's patient demographics. PAC members developed a patient centered vision, mission and action plan. PAC and community-academic research partners experienced the transformative power of centering the lived experiences of patients of color to promote health equity in cancer research.ConclusionEstablishing a patient advisory council at a safety net hospital cancer care center provided a platform for engaging a hardly reached population in patient centered research.
| S-EPMC8547568 | biostudies-literature
Project description:BackgroundTo build a Patient-Powered Research Networks (PPRN) that prioritizes the needs of its members who have inflammatory bowel diseases (IBD), we sought to better understand patients' preferences for what are the essential features that will facilitate and sustain engagement.MethodsWe conducted a two-phase qualitative study. Seven focus groups involving 62 participants with IBD were conducted (phase 1). Focus group results informed the phase 2 cognitive interviews, which included 13 phone interviews. Topics included experiences with IBD and research, PPRN engagement, patient-generated health data, and resources/tools to facilitate self-management. All focus groups and interviews were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti 7.5. Thematic categories were derived from the data, and codes were grouped into emergent themes and relationships.ResultsFour major themes emerged through inductive coding: (1) the impact of knowing; (2) participation barriers and challenges; (3) engagement and collaboration; and (4) customizable patient portal features/functionalities. Participants were motivated to participate in the PPRN because the knowledge gained from research studies would benefit both society and the individual. Main concerns included credibility of online resources, pharmaceutical industry profiting from their data, data security, and participation expectations. Participants wanted a true and equal partnership in every phase of building a PPRN. Participants felt it was important to have access to personal health records and be able to track health status and symptoms.ConclusionPartnering with participants throughout PPRN development was critical to understanding the needs and preferences of patients with IBDs and for shaping engagement strategies and the portal's design.
| S-EPMC6143211 | biostudies-literature
Project description:Mentored Patient Oriented Research in Lymphoma
| PRJNA730943 | ENA
Project description:Mentored Patient Oriented Research in Lymphoma
| PRJNA730944 | ENA