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Patient partners (PP) are well positioned to make meaningful contributions to healthcare through their lived experiences and personal narratives. However, researchers must ensure that patients are engaged authentically and collaboratively in knowledge generation. As part of a larger project, 4 PP were engaged in the co-design of a virtual reality video aimed at promoting an understanding of patients' lived experience with COVID-19 during the initial phase of the pandemic. This paper reports on findings from follow-up evaluation interviews with PP about their experiences participating in this project. Thematic analysis of interview transcripts resulted in 2 major themes as well as facilitators and barriers to PP engagement. Primary reasons to participate in the project were to contribute and give back to the community and make a difference for patients impacted by COVID-19. Engagement resulted in positive experiences and impacts for PP. Facilitators to engagement included feeling heard, being valued, and treated with respect. Barriers included length of time required to complete the project as well as PP health status. [ABSTRACT FROM AUTHOR]

Background: Patients, their family members and caregivers have firsthand experiences of living with or supporting someone living with a disease or medical condition. This knowledge by experience cannot be replaced by the knowledge acquired by clinicians, researchers, or other professionals through study and/or work. The Therapies for Long COVID in non-hospitalised individuals (TLC) research project was funded in the UK by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation to investigate the impact of long COVID on affected individuals. This article focuses on the implementation of PPIE for the TLC project. It provides details on the methodological approach that was adopted, the evaluation and reporting of the PPIE for the project and some previously unreported challenges we faced. Main body: A PPIE Lead was appointed to coordinate PPIE for the project and facilitate communication and relationship building with the patient partners. Our overarching approach was collaborative with patient partners actively involved in the various work packages of the project.. This was achieved by recruiting PPIE members from (1) direct contacts, (2) long COVID support groups (3) a local general practitioner (GP) surgery. Although we were unable to hold face-to-face meetings due to the social restrictions during the COVID-19 pandemic, we offered patients the choice of using virtual platforms like Zoom, telephone calls, and emails for communication. We adopted a 4-tiered model for the PPIE group with each tier providing different opportunities for contributing to the project. This model helped the PPIE Lead to effectively co-ordinate PPIE activities for the project as well as provide all patient partners the opportunity to contribute to the project whilst managing their condition. PPIE for the TLC project was co-evaluated with patient partners. Conclusions: Despite the challenges we encountered with the pandemic, the TLC project provided a valuable opportunity for patients to shape the design, conduct and dissemination of the research findings. The information provided in this article may be useful to other researchers and patients when planning PPIE for future health research. The implementation of PPIE in healthcare research could help ensure that the outcomes of research are those valued by and relevant to the needs of patients and other end users. Plain English summary: Patients, their family members and caregivers have firsthand experiences of living with or supporting someone living with a disease or medical condition. This knowledge by experience cannot be replaced by the knowledge clinicians, researchers, or other professionals acquire through study and/or work. The involvement of patients, their family members and caregivers in decisions about how health research is carried out can ensure that the results of research meet patients' needs and leads to tangible benefit for them. The 'Therapies for Long COVID' (TLC) research project was funded in the UK to investigate the impact of long COVID on affected individuals. People with long COVID, who we consider our patient partners, contributed substantially to the project. The results of some of the studies conducted as part of the project have been published elsewhere. In this article, we focus on how we organised and managed PPIE for the TLC project. Despite some challenges, we were able to involve several patient partners in the project. This was achieved by recruiting PPIE members from (1) direct contacts, (2) long COVID support groups (3) a local general practice (GP). Although we were unable to hold face-to-face meetings due to the social restrictions during the COVID-19 pandemic, we offered patients the choice of using virtual platforms like Zoom, telephone calls, and emails for communication. PPIE for the TLC project was co-evaluated with patient partners and all TLC publications have been co-authored with patient partners. We hope that the information provided in this article will be useful to other researchers and patients when planning PPIE for future health research. [ABSTRACT FROM AUTHOR]

Back pain is a prevalent condition that affects 1 in 6 Australians at any time, with high associated health care costs. To date, there is limited information relating to symptom severity and recovery trajectory in people with back pain who present to the emergency department for care. A digital care pathway (DCP) can track patient outcomes following presentation with back pain. The primary aim of this protocol is to outline the co-development, implementation, and evaluation of a DCP for back pain patients who present to the emergency department. The primary aim will be addressed in 3 overlapping phases: Phase 1 (co-design) will include interviews with back pain patients and health care professionals from the Northern Hospital Emergency Department. Interview findings will inform education resources featured on the DCP and establish questionnaire content and frequency acceptability. Phase 2 (implementation) will include the rollout of the DCP and tracking of patient-reported outcome measures, which will be collected over 12 weeks. Phase 3 (evaluation) will include interviews with a subset of back pain patients who have participated in Phase 2 to evaluate the acceptability of the DCP and the barriers and facilitators of using the DCP. This project has been approved via the National Health and Medical Research Council of Australia's National Mutual Acceptance Scheme by St Vincent's Hospital Human Ethics Committee (2022/PID06476), La Trobe University Research Governance (HEC#206/22), and Northern Health Research Governance (NH-2023-372687). We plan to publish the findings in a peer-reviewed journal and present them at conferences. [ABSTRACT FROM AUTHOR]

Introduction: Patient oriented research (POR) invites patients to partner with researchers, clinicians, and other stakeholders, incorporating diverse perspectives to generate scientific evidence meaningful to all parties involved. We adopted a POR approach for this study evaluating the feasibility of conducting a randomized control trial of a novel tri-compartment offloader brace for knee osteoarthritis. We involved patients as partners to enhance study design, implementation and interpretation of key outcomes. Approach: Patient involvement consisted of two patient leaders and five patient advisors. Patients participated in 2 virtual focus groups to discuss study outcomes, protocol, results and knowledge translation. Patients were involved in all aspects of the research cycle. Outcomes: Patient feedback resulted in changes to study design, documentation, participant recruitment, data collection, results interpretation and knowledge dissemination, improving the participant experience and aligning study outcomes with patient priorities. Study participants showed a high level of protocol adherence and follow-up rates were excellent. We experienced several unexpected benefits including genuine friendships, a deeper understanding of the patient experience, a more pragmatic approach to clinical research, and leadership opportunities for patients. Recommendations: We agreed on POR "non-negotiables" to ensure a positive experience for everyone, including creating a safe and comfortable environment, being genuinely receptive to patient feedback, and providing appropriate supports for patients. We strongly recommend that researchers (1) involve patients as early as possible, (2) provide ample and equal opportunities for all patients to be involved, and (3) address system hierarchy by involving patients as equals and fully considering all patient ideas from the beginning of the project. Conclusions: While POR is a learning process that is often more challenging than the traditional clinical research approach, the benefits are well worth the additional time and effort required to do it well. Over time, our team experienced a cultural shift and evolution from a top-down research approach to a more inclusive approach considering patient voices as equal to those of researchers. Patient involvement in all aspects of the research process, from question development to results interpretation and dissemination is integral to clinical research advancing equitably. Plain English Summary: Involving patients as partners in research can be challenging. However, the benefits are well worth the additional time and effort required to do it well. Patients improve the relevance, success and impact of clinical research, and are central to clinical research advancing. We partnered with seven patients from the community to conduct a research study assessing the effectiveness of a new knee brace for people with knee osteoarthritis. Patients participated in 2 virtual Zoom discussions and were involved in all aspects of the research process. The feedback received from patients led to many helpful changes to the study design, documents, recruitment strategies, data collection, and how to understand and share our results. These changes made the study more aligned with patient priorities and improved participants' experience. Study participants followed study instructions and the majority completed the study. Our team also experienced many unexpected benefits of involving patients in research including genuine friendships, a deeper understanding of the patient experience, a more practical approach to clinical research, and more leadership opportunities for patients. We agreed that for everyone on the team to have a good experience, it's important to create a safe and comfortable environment, really listen to and consider patient input, and provide patients the tools and trainings they need to fully participate. We recommend that researchers involve patients in their studies as early as possible, give patients lots of opportunities to be involved, and involve patients as equals, considering their ideas from start to finish. [ABSTRACT FROM AUTHOR]

Abstract Background Patients, their family members and caregivers have firsthand experiences of living with or supporting someone living with a disease or medical condition. This knowledge by experience cannot be replaced by the knowledge acquired by clinicians, researchers, or other professionals through study and/or work. The Therapies for Long COVID in non-hospitalised individuals (TLC) research project was funded in the UK by the National Institute for Health and Care Research (NIHR) and UK Research and Innovation to investigate the impact of long COVID on affected individuals. This article focuses on the implementation of PPIE for the TLC project. It provides details on the methodological approach that was adopted, the evaluation and reporting of the PPIE for the project and some previously unreported challenges we faced. Main body A PPIE Lead was appointed to coordinate PPIE for the project and facilitate communication and relationship building with the patient partners. Our overarching approach was collaborative with patient partners actively involved in the various work packages of the project.. This was achieved by recruiting PPIE members from (1) direct contacts, (2) long COVID support groups (3) a local general practitioner (GP) surgery. Although we were unable to hold face-to-face meetings due to the social restrictions during the COVID-19 pandemic, we offered patients the choice of using virtual platforms like Zoom, telephone calls, and emails for communication. We adopted a 4-tiered model for the PPIE group with each tier providing different opportunities for contributing to the project. This model helped the PPIE Lead to effectively co-ordinate PPIE activities for the project as well as provide all patient partners the opportunity to contribute to the project whilst managing their condition. PPIE for the TLC project was co-evaluated with patient partners. Conclusions Despite the challenges we encountered with the pandemic, the TLC project provided a valuable opportunity for patients to shape the design, conduct and dissemination of the research findings. The information provided in this article may be useful to other researchers and patients when planning PPIE for future health research. The implementation of PPIE in healthcare research could help ensure that the outcomes of research are those valued by and relevant to the needs of patients and other end users.

Abstract Introduction Patient oriented research (POR) invites patients to partner with researchers, clinicians, and other stakeholders, incorporating diverse perspectives to generate scientific evidence meaningful to all parties involved. We adopted a POR approach for this study evaluating the feasibility of conducting a randomized control trial of a novel tri-compartment offloader brace for knee osteoarthritis. We involved patients as partners to enhance study design, implementation and interpretation of key outcomes. Approach Patient involvement consisted of two patient leaders and five patient advisors. Patients participated in 2 virtual focus groups to discuss study outcomes, protocol, results and knowledge translation. Patients were involved in all aspects of the research cycle. Outcomes Patient feedback resulted in changes to study design, documentation, participant recruitment, data collection, results interpretation and knowledge dissemination, improving the participant experience and aligning study outcomes with patient priorities. Study participants showed a high level of protocol adherence and follow-up rates were excellent. We experienced several unexpected benefits including genuine friendships, a deeper understanding of the patient experience, a more pragmatic approach to clinical research, and leadership opportunities for patients. Recommendations We agreed on POR “non-negotiables” to ensure a positive experience for everyone, including creating a safe and comfortable environment, being genuinely receptive to patient feedback, and providing appropriate supports for patients. We strongly recommend that researchers (1) involve patients as early as possible, (2) provide ample and equal opportunities for all patients to be involved, and (3) address system hierarchy by involving patients as equals and fully considering all patient ideas from the beginning of the project. Conclusions While POR is a learning process that is often more challenging than the traditional clinical research approach, the benefits are well worth the additional time and effort required to do it well. Over time, our team experienced a cultural shift and evolution from a top-down research approach to a more inclusive approach considering patient voices as equal to those of researchers. Patient involvement in all aspects of the research process, from question development to results interpretation and dissemination is integral to clinical research advancing equitably.

Background: Individuals with opioid use disorder and cooccurring mental health concerns experience heightened consequences and lower rates of treatment access. Engaging patients as research partners alongside health systems is critical for tailoring care for this population. Collaborative care is promising for the treatment of co-occurring disorders Objectives: We used a community-participatory partnered research1 approach to partner with patients, providers, and clinic administrators to adapt and implement a collaborative care intervention for co-occurring disorders in primary care. Methods: We conducted qualitative interviews with patients to assess their feedback on the proposed collaborative care model before intervention implementation. A first round of interviews was conducted to obtain patient feedback on our adaptation ideas (n = 11). The team then incorporated these suggestions, beta-tested the intervention with participants (n = 9), and assessed participant feedback. Data were analyzed using rapid content analysis and then implemented by health systems. Results: Patient feedback underscored the need for the care coordinator (CC) to be trained in patient engagement and stigma reduction and to provide assistance around socioeconomic barriers and relapse. Patients shared that it was helpful to have the CC address co-occurring disorders, emphasized the need for the CC to be flexible, and expressed that tele-health was acceptable. Patient feedback was integrated in subsequent CC training with health systems. Conclusions: The present research demonstrates the feasibility and usefulness of incorporating patient perspectives into treatment design and implementation in health systems using community-participatory partnered research. [ABSTRACT FROM AUTHOR]

Introduction: Qualitative research on the perceptions of healthcare professionals involved in cancer care about their respective roles in the patient care pathway is limited. Therefore, the aim of this qualitative study was to document these perceptions. Methods: A multidisciplinary team that included patient researchers constructed a semi‐structured interview guide on the perceptions of the colorectal cancer care pathway by professionals. Interviews were conducted with healthcare professionals from two French hospitals that manage patients with colorectal cancer. Then, the interviews were fully transcribed and analysed by the whole multidisciplinary team. Results: Thirteen healthcare professionals were interviewed (six nurses, four physicians, one psychologist, one social worker and one secretary). They described the colorectal care pathway using a great lexical diversity and listed a significant number of professionals as taking part in this pathway. Among the people mentioned were healthcare professionals working inside and outside the hospital, family members and non‐conventional medicine practitioners. However, they did not spontaneously mention the patient. Their views on the role of the referring physician, the general practitioner and the patient were further explored. The interviews highlighted the coordination difficulties among the various professionals, particularly between general practitioners and hospital teams. These data provided interesting elements for developing a tool to help coordination among professionals. Conclusions: This preliminary study, with its participatory design, brings interesting elements of reflection on the care pathway for patients with colorectal cancer. It will continue through the creation of a larger participatory project. Patient or Public Contribution: Patient partners were included in all steps of this study. This transdisciplinary project was coordinated by a group composed of three patient partners, two healthcare professionals and two humanities and social sciences researchers. Their knowledge of the patient's perspective on the care pathway enriched discussions from the study design to results analysis. [ABSTRACT FROM AUTHOR]

In the traditional clinical research model, patients are typically involved only as participants. However, there has been a shift in recent years highlighting the value and contributions that patients bring as members of the research team, across the clinical research lifecycle. It is becoming increasingly evident that to develop research that is both meaningful to people who have the targeted condition and is feasible, there are important benefits of involving patients in the planning, conduct, and dissemination of research from its earliest stages. In fact, research funders and regulatory agencies are now explicitly encouraging, and sometimes requiring, that patients are engaged as partners in research. Although this approach has become commonplace in some fields of clinical research, it remains the exception in clinical pain research. As such, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research in an effective and purposeful manner. This article summarizes the results of this meeting and offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination. [ABSTRACT FROM AUTHOR]

ABSTRACT Introduction Qualitative research on the perceptions of healthcare professionals involved in cancer care about their respective roles in the patient care pathway is limited. Therefore, the aim of this qualitative study was to document these perceptions. Methods A multidisciplinary team that included patient researchers constructed a semi‐structured interview guide on the perceptions of the colorectal cancer care pathway by professionals. Interviews were conducted with healthcare professionals from two French hospitals that manage patients with colorectal cancer. Then, the interviews were fully transcribed and analysed by the whole multidisciplinary team. Results Thirteen healthcare professionals were interviewed (six nurses, four physicians, one psychologist, one social worker and one secretary). They described the colorectal care pathway using a great lexical diversity and listed a significant number of professionals as taking part in this pathway. Among the people mentioned were healthcare professionals working inside and outside the hospital, family members and non‐conventional medicine practitioners. However, they did not spontaneously mention the patient. Their views on the role of the referring physician, the general practitioner and the patient were further explored. The interviews highlighted the coordination difficulties among the various professionals, particularly between general practitioners and hospital teams. These data provided interesting elements for developing a tool to help coordination among professionals. Conclusions This preliminary study, with its participatory design, brings interesting elements of reflection on the care pathway for patients with colorectal cancer. It will continue through the creation of a larger participatory project. Patient or Public Contribution Patient partners were included in all steps of this study. This transdisciplinary project was coordinated by a group composed of three patient partners, two healthcare professionals and two humanities and social sciences researchers. Their knowledge of the patient's perspective on the care pathway enriched discussions from the study design to results analysis.

Krzysztof Kaliszewski, Szymon Makles, Agnieszka Fr&aogon;tczak, Micha&lstrok; Kisiel, Patrycja Lipska, Agata Stebel Department of General, Minimally Invasive and Endocrine Surgery, Wroclaw Medical University, Wroclaw, 50-556, PolandCorrespondence: Szymon Makles, Tel +48 662 761 377, Email szymon.makles@student.umw.edu.plIntroduction: A crucial aspect of the education of prospective medical professionals is their interaction with patients. The study aimed to explore patients’ perspectives on the interaction between medical students and themselves. It sought to understand how patients perceive this dynamic within clinical classes. The goal was to gather insights into the most favorable behavior and demeanor of medical students during these sessions, with the overarching objective of enhancing patient comfort.Material and Methods: The authors collected a total of 403 surveys from patients of a teaching hospital, regarding their perception of students as healthcare providers. The participants ranged in age from 18 to 92. 53.83% of the participants were female, and 46.17% were male. The surveys were collected between April 8th, 2022, and August 10th, 2022. The results of the anonymous survey undergone statistical analyses using the Mann‒Whitney U-test for comparing two groups and the Kruskal‒Wallis test for comparing more than two groups, because the Shapiro‒Wilk test indicated that the data did not follow a normal distribution.Results: The study delved into patients’ assessments of students’ external presentation, adherence to behavioral norms, empathetic qualities, consideration during intimate examinations, and preferences for the organization of clinical classes. Our research indicates notable differences in responses based on age. Specifically, the senior demographic prioritizes students’ external presentation, communication and the utilization of courteous language more often than younger individuals (p< 0.05). Attendees exhibit varying levels of interest in participating in educational sessions with students based on the ward. Significantly, individuals in the gynecology ward display the least enthusiasm for engagement (p< 0.05). Notably, the majority of patients perceive their involvement in the education of future healthcare professionals to be essential (83.38%).Conclusion: The study found that generally, patients voluntarily engage in educational classes with students. The relationship between patients and students is amicable, and the majority of students display a respectful demeanor toward patients. Nonetheless, preserving patient confidentiality and ensuring the proper management of classes remain persistent issues. This is particularly crucial, especially when the clinical classes pertain to intimate and personal health matters of a patient. Upholding and enriching the organization of such sessions, along with the attentiveness and knowledge of medical students regarding patient comfort, assumes heightened significance.Keywords: medical education, clinical teaching, student-patient relationship, patients’ opinions on students, patient partners

Abstract Background Patient and public involvement in health-related research is a new discipline in Denmark. In 2021, a national conference titled 'Patient and Public Involvement in Complex Intervention Research' provided a forum for discussion between patient partners, researchers and clinicians on involving patients as partners in complex intervention research. Methods We aimed to describe specific challenges to and initiatives for patient partner involvement in order to develop recommendations for creating successful partnerships in complex intervention research. Through a collaborative learning process, 140 researchers identified the most important challenges for them in patient partner involvement and potential initiatives to improve such involvement. At a subsequent workshop, four patient partners identified the challenges and initiatives from their perspective as patient partners. They also gave feedback on the challenges and initiatives suggested by the researchers and helped shape three recommendations for practice. Three of the patient partners were involved in writing this paper. Results The five most important challenges identified by researchers were time, recruitment, ethics, power and inequality. Between four and seven initiatives to overcome these challenges were suggested. The three most important challenges identified by patient partners were communication, when you get information that is hard to handle and recruitment. They suggested three to four initiatives for improvement. Patient partners confirmed the importance of all the researcher identified challenges when presented with them, they also provided additional comments on the researchers’ initiatives. This led to the formation of recommendations for involving patient partners. Conclusions A collaborative learning process was shown to be a suitable method for patient partner involvement. Consistency was seen between the challenges and initiatives identified by researchers and patient partners. Based on these observations, three recommendations were developed: (1) create specific programmes that aim to involve all kind of patients (including but limited to vulnerable patients) as patient partners, (2) produce ethical guidelines for the involvement of patient partners, and (3) develop a national strategy for patient partner involvement. To build on these recommendations, a joint workshop with both researchers and patient partners is needed.

From 19 to 21 November 2022, BioCanRx held its first post-pandemic in-person Summit for Cancer Immunotherapy in Montreal, Canada. The meeting was well attended by patients, trainees, researchers, clinicians, and industry professionals, who came together to discuss the current state and future of biotherapeutics for cancer in Canada and beyond. Three plenaries, three keynote speakers, a lively debate, and panel discussions, together with poster sessions and a social event, made the event memorable and productive. The current state of cellular therapies, cellular engineering, clinical trials, and the role of the cancer microbiome were discussed in plenary session, and the patient voice was welcomed and present throughout the meeting, in large part due to the Learning Institute, a BioCanRx initiative to include patient partners in research. In this meeting review, we highlight the platform presentations, keynote speakers, debate combatants, panellists, and the patient perspective on the annual meeting. [ABSTRACT FROM AUTHOR]

Background: The risk of developing chronic postsurgical pain (CPSP) in youth is related to psychological factors, including preoperative anxiety, depression, patient/caregiver pain catastrophizing, and poor self-efficacy in managing pain. While interventions exist to address these factors, they are generally brief and educational in nature. The current paper details patient partner feedback on the development of a psychologist-delivered perioperative psychological program (PPP) designed to identify and target psychological risk factors for CPSP and improve self-efficacy in managing pain. Methods: Qualitative interviews were conducted with two patients and their caregivers to discuss their surgical and pain management experience and to advise on components of the PPP. Results: Reflexive thematic analysis of interviews generated the following themes, which were incorporated into the content and implementation of the PPP: caregiver involvement, psychological and physical strategies for pain management, biopsychosocial pain education, intervention structure, and supporting materials. Conclusions: The development of a novel psychologist-led PPP is a promising approach to mitigate mental health risks associated with pediatric CPSP and potentially boost postoperative outcomes and family wellbeing. Integrating patient partner feedback ensures that the PPP is relevant, acceptable, and aligned with the needs and preferences of the patients it is designed to serve. [ABSTRACT FROM AUTHOR]

Introduction: Engaging patients as partners in care is a relevant approach to meeting the challenges of chronic illnesses in our healthcare system. Few studies allow us to explore the engagement of patient partners (PP) in care. Objectives: The research objectives were to describe the context of PP engagement in a clinical setting, the factors influencing this engagement and the outcomes. Methods: We used a descriptive qualitative design, semi-structured individual interviews and performed a thematic analysis with the data. Results: A total of 10 participants took part in the research: 1 patient, 5 PPs and 4 professionals. The majority of PPs were involved in partnerships in the care sector, and some in teaching. Participants perceived several factors influencing their involvement, such as a therapeutic education training program received and acceptance of the illness, and hindering factors such as shyness and the location of the intervention. The PP benefits of engaging themselves improve self-management and break isolation. Conclusion: These preliminary data provide a clearer picture of the PP involvement in clinical settings and the positive impact perceived. Engaging patients as partners in care is essential to promote the autonomy and well-being of patients living with a chronic illness. [ABSTRACT FROM AUTHOR]

Introduction: L'autogestion est une approche privilégiée pour gérer la douleur chronique. Jusqu'à tout récemment, aucun programme d'autogestion en français, en ligne et codéveloppé avec des patients partenaires atteints de douleur n'était accessible gratuitement. Pourtant, la littérature pointe vers l'inclusion de ces partenaires aux équipes de développement, permettant une meilleure considération de leurs besoins et préférences. Objectif: Cette étude visait le codéveloppement d'un tel programme d'autogestion de la douleur chronique, réalisable sans le soutien d'un professionnel de la santé. Méthode: La démarche s'inscrit dans la recherche basée sur la conception et est réalisée dans le cadre d'un partenariat étroit entre chercheurs, partenaires atteints de douleur chronique, professionnels de la santé, étudiants en médecine et graphiste. Nous avons principalement basé le contenu du programme sur une revue systématique de la littérature, des guides de pratique, l'expérience clinique et l'expertise expérientielle des patients. Le codéveloppement a été réalisé en plusieurs cycles itératifs, dont trois mises à l'essai. Résultats: Grâce à l'apport des parties prenantes, nous avons codéveloppé le programme « Agir pour moi ». L'identité du programme, son contenu, sa structure et les modalités d'apprentissage proposées soutiennent pas à pas le développement de compétences et l'application de stratégies d'autogestion par soi-même. Ces démarches sont favorisées par l'intégration de témoignages positifs, d'un contenu empreint de bienveillance et d'une utilisation accrue de techniques de changement de comportement. Conclusion: L'approche de recherche choisie a permis de créer un environnement d'apprentissage jugé bienveillant, susceptible de soutenir le sentiment d'auto-efficacité et la motivation. [ABSTRACT FROM AUTHOR]

Abstract Background Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS resources; (2) Summarize recommended LS characteristics and content; (3) Outline recommended processes to write a LS; and (4) Obtain stakeholder perspectives on LS characteristics and writing processes. Methods This project was a patient and public partner (PPP)-initiated topic co-led by a PPP and a researcher. The team was supported by three additional PPPs and four researchers. A search of peer-reviewed (Ovid MEDLINE, Scopus, Embase, Cochrane libraries, CINAHL, PsycINFO, ERIC and PubMed data bases) and grey literature was conducted using the Joanna Briggs Institute Methodological Guidance for Scoping Reviews to include any resource that described LS characteristics and writing processes. Two reviewers screened and extracted all resources. Resource descriptions and characteristics were organized by frequency, and processes were inductively analyzed. Nine patient and public partners and researchers participated in three consultation exercise sessions to contextualize the review findings. Results Of the identified 80 resources, 99% described characteristics of a LS and 13% described processes for writing a LS. About half (51%) of the resources were published in the last two years. The most recommended characteristics were to avoid jargon (78%) and long or complex sentences (60%). The most frequently suggested LS content to include was study findings (79%). The key steps in writing a LS were doing pre-work, preparing for the target audience, writing, reviewing, finalizing, and disseminating knowledge. Consultation exercise participants prioritized some LS characteristics differently compared to the literature and found many characteristics oversimplistic. Consultation exercise participants generally supported the writing processes found in the literature but suggested some refinements. Conclusions Writing LSs is potentially a growing area, however, efforts are needed to enhance our understanding of important LS characteristics, create resources with and for PPPs, and develop optimal writing processes.

Background: Lay summaries (LSs) of scientific evidence are critical to sharing research with non-specialist audiences. This scoping review with a consultation exercise aimed to (1) Describe features of the available LS resources; (2) Summarize recommended LS characteristics and content; (3) Outline recommended processes to write a LS; and (4) Obtain stakeholder perspectives on LS characteristics and writing processes. Methods: This project was a patient and public partner (PPP)-initiated topic co-led by a PPP and a researcher. The team was supported by three additional PPPs and four researchers. A search of peer-reviewed (Ovid MEDLINE, Scopus, Embase, Cochrane libraries, CINAHL, PsycINFO, ERIC and PubMed data bases) and grey literature was conducted using the Joanna Briggs Institute Methodological Guidance for Scoping Reviews to include any resource that described LS characteristics and writing processes. Two reviewers screened and extracted all resources. Resource descriptions and characteristics were organized by frequency, and processes were inductively analyzed. Nine patient and public partners and researchers participated in three consultation exercise sessions to contextualize the review findings. Results: Of the identified 80 resources, 99% described characteristics of a LS and 13% described processes for writing a LS. About half (51%) of the resources were published in the last two years. The most recommended characteristics were to avoid jargon (78%) and long or complex sentences (60%). The most frequently suggested LS content to include was study findings (79%). The key steps in writing a LS were doing pre-work, preparing for the target audience, writing, reviewing, finalizing, and disseminating knowledge. Consultation exercise participants prioritized some LS characteristics differently compared to the literature and found many characteristics oversimplistic. Consultation exercise participants generally supported the writing processes found in the literature but suggested some refinements. Conclusions: Writing LSs is potentially a growing area, however, efforts are needed to enhance our understanding of important LS characteristics, create resources with and for PPPs, and develop optimal writing processes. Plain English summary: This study was suggested by a patient partner to place attention on the role patient and public partners (PPPs) could play in developing lay summaries. A lay summary (LS) is a summary of a research project written for members of the public, including patients. A lot of information is written about recommendations for LSs, but none of it has been summarized. This study: (1) Pulled together and summarized all existing resources that made recommendations on features of LSs and/or the steps for writing them; and (2) Conducted meetings with people interested in LSs (PPPs and researchers) to gather their perspectives on this summary of resources. The study engaged PPPs in all aspects, including co-leadership. We found 80 resources on LSs. Almost all (95%) of the resources were written by researchers for researchers, with only 18% involving PPPs. The most common recommendations were to avoid jargon (78%) and remove unnecessary and complex words (60%). Only 13% of the resources had information about the steps for writing a LS. People in our meetings did not always agree with the recommended LS characteristics and found them overly simplistic. They felt that identifying and writing for the intended audience of the LS was important, every study should have a LS, PPPs should have the opportunity to be involved, and greater attention should be paid to the steps involved in writing a LS. Lay summary development is a complex, multistep process requiring the inclusion of PPPs for their irreplaceable perspectives and contributions. [ABSTRACT FROM AUTHOR]

Globally, health systems are increasingly striving to deliver evidence based care that improves patients', caregivers' and communities' health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experiences—experiences accessing and/or supporting someone who accesses healthcare services—are now viewed by many systems as expertise and an important part of understanding and improving care quality. Patients', caregivers' and communities' participation in health systems can range from healthcare organizational design to being members of research teams. Unfortunately, this involvement greatly varies and these groups are often sidelined to the start of research projects, with little to no role in later project stages. Additionally, some systems may forgo direct engagement, focusing solely on patient data collection and analysis. Given the benefits of active patient, caregiver and community participation in health systems on patient health outcomes, systems have begun identifying different approaches to studying and applying findings of patient, caregiver and community informed care initiatives in a rapid and consistent fashion. The learning health system (LHS) is one approach that can foster deeper and continuous engagement of these groups in health systems change. This approach embeds research into health systems, continuously learning from data and translating findings into healthcare practices in real time. Here, ongoing patient, caregiver and community involvement is considered vital for a well functioning LHS. Despite their importance, great variability exists as to what their involvement means in practice. This commentary examines the current state of patient, caregiver and community participation in the LHS. In particular, gaps in and need for resources to support their knowledge of the LHS are discussed. We conclude by recommending several factors health systems must consider in order to increase participation in their LHS. Systems must: (1) assess patients', caregivers and community understanding of how their feedback are used in the LHS and how collected data are used to inform patient care; (2) review the level and extent of these groups' participation in health system improvement activities; and (3) examine whether health systems have the workforce, capacity and infrastructure to nurture continuous and impactful engagement. Plain English summary: Patients, caregivers and communities have started taking more hands on roles in health systems, partnering with healthcare providers and researchers to impact the ways healthcare services are made and delivered. Their input has been shown to improve patient health. While many systems are working to include patients, caregivers and communities in helping improve healthcare, this work often focuses on collecting and analyzing patient data without using it in a timely way. Also, the level of their input can vary and is often limited to the start of a research project. As more health systems recognize the importance of their input in creating better healthcare, some are using different approaches to make this feedback a constant part of their systems. The learning health system (LHS) is one approach that can support deeper and ongoing patient, caregiver and community involvement in health system change. In the LHS, projects are frequently reviewed and feedback used to help health systems make changes as they go. While their involvement is critical to a well functioning LHS, it is unclear what this involvement looks like. This commentary reviews the current state of this involvement. We offer readers a way forward and suggestions to help them determine if they are actively including patients, caregivers and communities in their LHS. Suggestions include reviewing: (1) the ways data are collected and used; (2) how patients, caregivers and communities are involved in health system improvement efforts; and (3) whether or not systems have the tools needed to frequently partner with these groups. [ABSTRACT FROM AUTHOR]

Abstract: The interest and the rationale for meaningful engagement of patients as partners in clinical trials of pain treatments has been increasing. No specific guidance on patient engagement for pain research studies currently exists; thus, the goal of this narrative review was to provide a historical perspective and a current evaluation of the literature on engaging patients as partners in clinical studies in general and in pain-related studies more specifically. We described how regulatory and funding agencies have developed approaches to incorporate input from patients and patient partners in their decision-making processes. We provided an overview on key practices of patient recruitment and engagement as partners in clinical research and highlighted the perceived benefits and challenges of such partnerships. We summarized factors that can facilitate or hinder meaningful patient engagement in clinical trials of pain treatments and outlined gaps that future research should address to optimize patient-centered clinical research. [ABSTRACT FROM AUTHOR]

Partnership in healthcare is a cooperative relationship based on complementary knowledge between patients and professionals, which fosters the self-determination of the former. This article draws on the framework of the Montreal model applied to primary care, as well as the results of a research project that identified the key success factors for integrating patient partners into a multi-professional nursing home., (Copyright © 2024 Elsevier Masson SAS. All rights reserved.)

Background: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. Objective: Our objective was to create a public interest group through an academic–community partnership focused on cancer research and public engagement. Methods: A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group's activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels. Results: The public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group's work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website. Conclusion: Public Interest Group on Cancer Research represents a highly successful patient–researcher partnership in oncology. It designs meaningful and patient-oriented studies and outreach activities in cancer. It also elevates and widely supports cancer patient and family voice. Plain English summary: Cancer patients and their family members have unique and lived experience with the condition. Therefore, collaborating with them is important in cancer science. We aimed to create such a collaboration in Newfoundland and Labrador, Canada. In 2021, we successfully formed our diverse collaborative group. Currently, our group includes 12 public representatives. We meet online and discuss matters important to members. We also design studies and events together. Our discussions have identified four topics that need further research and policy changes such as information needs and unique needs of caregivers and family members. Our activities expand over time. For example, lately we started to advocate for other cancer patients and families. In conclusion, we formed a successful cancer patient, family member, and researcher collaborative group. Our work informs the public, healthcare systems, and scientists on important cancer related matters. [ABSTRACT FROM AUTHOR]

Plain English summary Checklists (such as the GRIPP2) have been proposed as a way to improve how research papers report patient and public involvement in research projects. We were recently asked to complete a GRIPP2 as part of a peer review process, and it felt divisive. AB—a service user researcher—was just as much a part of the research team as was BS—a critical health psychologist. However, the role of BS in the research did not have to be justified or reported in the same way that was being asked of AB. A further concern about being required to use the checklist was that it did not necessarily lead to better reporting. Rather, it created a false sense of objectivity about patient and public involvement, and this might serve to hide power imbalances and tokenism in the research process. We recommend that instead of relying on such checklists, that researchers, reviewers, editors and readers reflect on patient and public involvement processes and the ways in which these are reported. We also make recommendations to make future iterations of the GRIPP more inclusive.

Plain English summary This paper presents a roadmap for patient-oriented research in mental health in Canada. At the level of laboratory science, the direct involvement of patients and their collaboration with researchers on experimental development and dissemination of results has been scarce. With voices of collaborative patient partners, graduate students and the principal-investigator, it makes a clear case for involving people with lived experience within translational mental health research, which has shown positive outcomes that could potentially shape public policy and future practice. Starting with the premise that meaningful engagement spurs meaningful results, the paper addresses current literature, a discussion of the challenges faced by researchers and patient partners and includes a consideration of COVID-19 consequences. Ending with clear recommendations, this paper is an exciting call to action for involving patient partners in the full research cycle of mental health research and beyond.

Abstract 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 .

Abstract Background Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured. Objective Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships. Search Strategy A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand‐searched. Inclusion Criteria Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes. Data Extraction and Synthesis Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach. Main Results Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles. Discussion Addressing power dynamics in patient partner‐researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research. Conclusions Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.

Understanding of the value of patient and public involvement in research has grown in recent years, but so too has uncertainty about how best to practice and how best to report such involvement in research outputs. One way proposed to report such involvement is through checklists, such as the GRIPP2, which aims to improve quality, transparency, and consistency in such reporting. We critique the unproblematised use of such a tool because of two main concerns. First, being asked to complete a GRIPP2 for a recent publication felt divisive given that the service user researcher was as much a member of the authorship team as the other researchers (whose involvement did not necessitate a checklist). Second, checklists do not actually address the power imbalances and tokenism that is rife in patient and public involvement in research. Indeed, the false sense of objectivity fostered by meeting the minimum requirements of the checklist means that researchers may not go further to engage in reflexive research practices and reporting. Rather than rote use of such checklists, we recommend mindful reflexive reporting in research outputs of patient and public involvement processes. We also recommend future iterations of the GRIPP consider (a) incorporating criteria about whether the checklist is completed by or with service user researchers or not, (b) addressing criteria that position service user research as needing to be justified, and (c) expanding the "critical perspective" element of the checklist to explicitly consider power differentials. Plain English summary: Checklists (such as the GRIPP2) have been proposed as a way to improve how research papers report patient and public involvement in research projects. We were recently asked to complete a GRIPP2 as part of a peer review process, and it felt divisive. AB—a service user researcher—was just as much a part of the research team as was BS—a critical health psychologist. However, the role of BS in the research did not have to be justified or reported in the same way that was being asked of AB. A further concern about being required to use the checklist was that it did not necessarily lead to better reporting. Rather, it created a false sense of objectivity about patient and public involvement, and this might serve to hide power imbalances and tokenism in the research process. We recommend that instead of relying on such checklists, that researchers, reviewers, editors and readers reflect on patient and public involvement processes and the ways in which these are reported. We also make recommendations to make future iterations of the GRIPP more inclusive. [ABSTRACT FROM AUTHOR]

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Context: The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease. Objectives: (i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective. Methodology: All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis. Results: Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change. Conclusion: The combination of methods to collect and integrate patients' knowledge and patient associations' perspectives helped develop a comprehensive understanding of a controversial object of evaluation. [ABSTRACT FROM AUTHOR]

Plain English summary Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences. Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team. This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research. Abstract Background Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities. Discussion The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research. Conclusions Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

Background: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured. Objective: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships. Search Strategy: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand‐searched. Inclusion Criteria: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes. Data Extraction and Synthesis: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach. Main Results: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles. Discussion: Addressing power dynamics in patient partner‐researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research. Conclusions: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work. [ABSTRACT FROM AUTHOR]

Objective: The Canadian Eating Disorder Priority Setting Partnership was established to identify and prioritize the top 10 research priorities for females, 15 years or older, with anorexia nervosa, by incorporating equal input from those with lived experience, families, and healthcare professionals. Method: This project, which closely followed the James Lind Alliance guidelines, solicited research priorities from the Canadian eating disorder community by means of a five‐step process including use of a survey, response collation, literature checking, interim ranking survey, and in‐person prioritization workshop. Results: The initial survey elicited 897 priorities from 147 individuals, with almost equal representation from all three stakeholder groups. From this, 603 responses aligned with the project objectives and were collapsed into 71 broader indicative questions. Based on available systematic reviews, 18 indicative questions were removed as they were considered answered by existing literature while 8 indicative questions were added from the recommendations of the reviews. In total, 61 indicative questions were ranked in an interim ranking survey, where 21 questions were prioritized as important by at least 20% of respondents. As a final step, 28 individuals from across Canada attended the prioritization workshop to coestablish the top 10 research priorities. Discussion: Top priorities were related to treatment gaps and the need for more surveillance data. This systematic methodology allowed for a transparent and collaborative approach to identifying current priorities from both the service user and provider perspective. Wide dissemination is anticipated to promote work that is of high relevance to patients, families, and clinicians. [ABSTRACT FROM AUTHOR]

In recent years health systems have engaged patient partners in decision-making. Provincial and Territorial Medical Associations (PTMAs) are the sole bargaining agents for physicians. PTMA negotiations with governments are often seen as insular. Adding the patient perspective could add tremendous value to negotiating committees, etc. as PTMAs look to advocate for person-centered care provided by their members. Using rapid scoping review methodology, PubMed was searched for studies reporting on the use of patient partners in PTMA decision-making. Title and abstract screening were conducted by a single reviewer with full-text review screened by two reviewers. The search yielded 231 titles with 10 moving to full-text review and ultimately no titles meeting inclusion criteria. This empty scoping review has identified a paucity of literature reporting on patient engagement in PTMA decision-making. Further research is required to determine the utility of introducing patient partners in this capacity., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2024, Brown et al.)

Active patient partner engagement with Stakeholders for Care in Oncology and Research for our Elders board (a diverse group of older patients with cancer, caregivers of older patients with cancer, survivors, and patient advocates) to conduct what, to the authors' knowledge, is the largest randomized geriatric assessment clinical trial published to date has been shown to be feasible and to result in tangible and invaluable benefits for both the research team and patient partners alike. Actively engaging patient partners should be an essential component of the development, conduct, and completion of all clinical research. [ABSTRACT FROM AUTHOR]

Introduction: With advances in care, an increasing number of individuals with single-ventricle CHD are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. The goal of this pilot qualitative research study was to explore the lived experiences of partners of individuals with single-ventricle CHD., Methods: Partners of patients ≥18 years with single-ventricle CHD were recruited and participated in Experience Group sessions and 1:1 interviews. Experience Group sessions are lightly moderated groups that bring together individuals with similar circumstances to discuss their lived experiences, centreing them as the experts. Formal inductive qualitative coding was performed to identify salient themes., Results: Six partners of patients participated. Of these, four were males and four were married; all were partners of someone of the opposite sex. Themes identified included uncertainty about their partners' future health and mortality, becoming a lay CHD specialist, balancing multiple roles, and providing positivity and optimism. Over time, they took on a role as advocates for their partners and as repositories of medical history to help navigate the health system. Despite the uncertainties, participants described championing positivity and optimism for the future., Conclusions: In this first-of-its-kind pilot study, partners of individuals with single-ventricle CHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.

This study explored the experiences of partners of recipients of implantable cardioverter defibrillators (ICDs). Eighteen partners (11 female and 7 male) were interviewed using semi-structured interviews between 3 and 24 months following their partner's ICD implantation. Analysis focused on the emotional consequences of their partner having an ICD, and how they coped with these. Many of their emotions were negative; these included feeling traumatised by the initial cardiac event; anxiety and fear in relation to their partner's health, and the threat of the ICD firing; and frustration and anger, particularly in relation to the healthcare system. Coping strategies included: active problem-solving, which involved becoming informed about relevant issues and monitoring their partner's health; and engaging in protective behaviour, such as reassessing their role identity, avoidance and concealing worries from their partner. The clinical implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

Copyright of Sante Mentale au Quebec is the property of Revue Sante Mentale au Quebec and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Over the past decade, hospitals and health care systems have responded to the call for increased patient engagement and person-centered care. Organizations across the country have developed models and tools to assist in the effort toward patient and family engagement in health care delivery. In addition, current literature and trends suggest that patient satisfaction and quality outcomes are improved when patients and families become partners in their own health care and the delivery of that care. However, to formalize a patient-centric structure and process across a large health care system that is aimed at patient and family engagement can be a daunting activity. Utilizing well-established tools, Catholic Health Initiatives was successful in implementing the structures to deploy the ideas of patients and families in multiple facilities and care settings across 19 states. Nursing leaderships, in partnership with patients and their families within this health care delivery system, were the key contributors to the implementation of formalized patient and family advisory councils in hospitals across the enterprise. [ABSTRACT FROM AUTHOR]

Patient participation is an integral component in the development of clinical practice guidelines. However, patient engagement remains suboptimal, which signifies a predicament in guideline's legitimacy and transparency. Limited budgets, logistic constraints, and discordance in patients' and researchers' perception of a meaningful involvement are some barriers that hinder patient engagement. Advancing skill development across various roles within the guideline's process will enrich patient's contribution and allow them to voice their experience, knowledge, perspective, and concerns. Continuing patient education and evaluation of their engagement on both outcome and process will facilitate team cohesion, trustworthiness, and value to achieve optimal quality of care., Competing Interests: Disclosure The author has nothing to disclose., (Copyright © 2022 Elsevier Inc. All rights reserved.)