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Background: Health information technologies, including electronic health records (EHRs), have revolutionized health care delivery. These technologies promise to enhance the efficiency and quality of care through improved patient health information management. Despite the transformative potential of EHRs, the extent to which patient access contributes to increased engagement with health care services within different clinical setting remains a distinct and underexplored facet., Objective: This systematic review aims to investigate the impact of patient access to EHRs on health care engagement. Specifically, we seek to determine whether providing patients with access to their EHRs contributes to improved engagement with health care services., Methods: A comprehensive systematic review search was conducted across various international databases, including Ovid MEDLINE, Embase, PsycINFO, and CINAHL, to identify relevant studies published from January 1, 2010, to November 15, 2023. The search on these databases was conducted using a combination of keywords and Medical Subject Heading terms related to patient access to electronic health records, patient engagement, and health care services. Studies were included if they assessed the impact of patient access to EHRs on health care engagement and provided evidence (quantitative or qualitative) for that. The guidelines of the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 statement were followed for study selection, data extraction, and quality assessment. The included studies were assessed for quality using the Mixed Methods Appraisal Tool, and the results were reported using a narrative synthesis., Results: The initial search from the databases yielded 1737 studies, to which, after scanning their reference lists, we added 10 studies. Of these 1747 studies, 18 (1.03%) met the inclusion criteria for the final review. The synthesized evidence from these studies revealed a positive relationship between patient access to EHRs and health care engagement, addressing 6 categories of health care engagement dimensions and outcomes, including treatment adherence and self-management, patient involvement and empowerment, health care communication and relationship, patient satisfaction and health outcomes, use of health care resources, and usability concerns and barriers., Conclusions: The findings suggested a positive association between patient access to EHRs and health care engagement. The implications of these findings for health care providers, policy makers, and patients should be considered, highlighting the potential benefits and challenges associated with implementing and promoting patient access to EHRs. Further research directions have been proposed to deepen our understanding of this dynamic relationship., (©Dalia Alomar, Maryam Almashmoum, Iliada Eleftheriou, Pauline Whelan, John Ainsworth. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 20.11.2024.)

This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers. During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo., Competing Interests: Declarations Ethics approval and consent to participate The work outlined here was carried out as part of the PPI programme in the trial, and not as ethically approved research. As all contributors are authors no ethical approval was necessary. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Ring-based studies are a novel research design commonly used for research involving infectious diseases: contacts of newly infected individuals form a ring that is targeted for interventions (e.g., vaccine, post-exposure prophylaxis). Given the novelty of the research design, it is critical to obtain feedback from participants on their experiences with ring-based studies to help with the development of future trials., Methods: In 2021, we conducted 26 semi-structured interviews with adult participants of a COVID-19 ring-based post-exposure prophylaxis trial based in Canada. We applied a purposive sampling approach and electronically recruited participants who tested positive for COVID-19 (Index Cases) and either agreed or declined for the study team to contact their potentially exposed contacts. We also included individuals who participated in the trial after being potentially exposed to an Index Case (known as Ring Members), and those who declined to participate after potential exposure. The methodological design of semi-structured interviews allowed participants to share their opinions and experiences in the trial (e.g., elements they enjoyed and disliked regarding their participation in the study)., Results: The majority of participants in our study were women (62%) and the average age was 37.3 years (SD = 13.2). Overall, participants reported being highly satisfied with partaking in the ring-based trial. Notably, no substantial complaints were voiced about the trial's design involving contact after exposure. The most common reason of satisfaction was the knowledge of potentially helping others by advancing knowledge for a greater cause (e.g., development of potential treatment to prevent SARS-CoV-2 infection). Other reasons were curiosity about participating in a trial, and an activity to fill free time during the pandemic. A central element of dislike was confusion about instructions with the trial (e.g., independent at home SARS-CoV-2 testing). Additionally, maintaining confidentiality was a crucial concern for participants, who sought assurance that their data would not be shared beyond the scope of the study., Conclusions: Our results have the potential to inform future research, including clinical trials such as ring-based studies, by incorporating insights from participants' experiences into the development of study protocols. Despite some protocol-related challenges, participants expressed high satisfaction, driven by the desire to advance science and potentially aid others., (© 2024. The Author(s).)

Background: A number of patients have complex care needs that arise from interactions among multiple factors, such as multimorbidity, mental health issues, and social vulnerability. These factors influence decisions about healthcare and health services. Shared decision-making (SDM), a collaborative process between patients and professionals, is known to improve the quality of the decision-making process. However, follow-up challenges of patients with complex care needs (PCCNs) can lead to SDM specificities., Objective: To identify specificities of SDM with PCCNs., Methods: We conducted a scoping review using the Joanna Briggs Institute (JBI) methodology. We conducted a systematic search across MEDLINE, CINAHL, PsycINFO, and Academic Search Complete databases. Empirical studies about SDM with PCCNs published between 1997 and 2023 were eligible for inclusion. We conducted a mixed thematic analysis using deductive (Ottawa Decision Support Framework and Interprofessional Shared Decision-Making Model) and inductive approaches. Following Arksey & O'Malley's and Levac et al.'s methodological recommendations, we consulted experts (researchers, healthcare professionals, and patient partners) to enhance the findings., Results: Twelve studies were included in the review. Overall, our results demonstrated the importance of recognizing some specificities of SDM with PCCNs, such as the simultaneous presence of multiple decisions and the multidisciplinary and intersectoral nature of the healthcare and health services they receive., Conclusion: This scoping review highlights some specificities that must be considered in SDM with PCCNs to maintain its already-known benefits and ensure positive health and decision-making outcomes., (© 2024. The Author(s).)

Objective: To evaluate implementation of a patient decision aid for symptomatic uterine fibroid management to improve shared decision-making at five clinical settings across the United States., Methods: We used a type 3 hybrid effectiveness-implementation stepped-wedge design and the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) planning and evaluation framework. We conducted clinician training, monthly reach tracking with feedback to site clinical leads, patient and clinician surveys, and visit audio-recordings. Implementation strategies included assessment of organizational readiness for shared decision-making, synchronous clinician training, audit and feedback of decision aid reach, and access to multiple decision aid formats. Outcomes and analyses included patient-level reach, clinician-level adoption, and associations of patient-reported decision aid exposure (as treated) and setting-level implementation (intention-to-treat) with patient-reported (collaboRATE measure) and observed (OPTION-5 measure) shared decision-making. We also designed and assessed setting-level plans for sustainability and other factors impacting sustained decision aid use., Results: The decision aid was adopted by 72 of the 74 eligible gynecologists (97%) and reached 2553 patients across five settings. CollaboRATE scores improved among patients who reported receiving the decision aid (as-treated analysis, 69% vs. 59%; OR 1.6, 95% CI 1.16-2.27). CollaboRATE scores remained consistent before and after setting-level decision aid implementation (intention-to-treat analysis, 64% vs. 63%; OR 0.86, 95% CI 0.61-1.22). Participants would prefer to receive a decision aid at multiple time points (91.9% before the visit, 90.7% during the visit, 86.5% after the visit). Shared decision-making experiences did not improve when comparing pre vs. post-implementation collaboRATE scores across included settings (intention-to-treat, 64% vs. 63%; OR 0.86, 95% CI 0.61-1.22)., Conclusion: When patients with symptomatic uterine fibroids are given decision aids, they report higher shared decision-making scores. However, the differences we observed between the as-treated and intention-to-treat results suggest that unaddressed implementation challenges continue to limit the extent to which patients receive decision aids and likely hinder their overall impact. Future efforts to implement decision aids should explore enhancing their integration into clinical workflows and standard operating procedures, supported by organizational incentives that prioritize shared decision-making., Trial Registration: ClinicalTrials.gov NCT03985449; registered 6 June 2019., (© 2024. The Author(s).)

Background: Clinical practice guidelines (CPGs) are designed to assist health care professionals in medical decision-making, but they often lack effective integration of shared decision-making (SDM) principles to reflect patient values and preferences, particularly in the context of preference-sensitive CPG recommendations. To address this shortcoming and foster SDM through CPGs, the integration of patient decision aids (PDAs) into CPGs has been proposed as an important strategy. However, methods for systematically identifying and prioritizing CPG recommendations relevant to SDM and related decision support tools are currently lacking., Objective: The aim of the project is to develop (1) a tool for systematically identifying and prioritizing CPG recommendations for which SDM is considered particularly relevant and (2) a platform for PDAs to support practical SDM implementation., Methods: The project consists of 6 work packages (WPs). It is embedded in the German health care context but has an international focus. In WP 1, we will conduct a scoping review in bibliographic databases and gray literature sources to identify methods used to foster SDM via PDAs in the context of CPGs. In WP 2, we will conduct semistructured interviews with CPG experts to better understand the concepts of preference sensitivity and identify strategies for fostering SDM through CPGs. WP 3, a modified Delphi study including surveys and focus groups with SDM experts, aims to define and operationalize preference sensitivity. Based on the results of the Delphi study, we will develop a methodology for prioritizing key questions in CPGs. In WP 4, the tool will be developed. A list of relevant items to identify CPG recommendations for which SDM is most relevant will be created, tested, and iteratively refined, accompanied by the development of a user manual. In WP 5, a platform for creating and digitizing German-language PDAs will be developed to support the practical application of SDM during clinical encounters. WP 6 will conclude the project by testing the tool with newly developed and revised CPGs., Results: The Brandenburg Medical School Ethics Committee approved the project (165122023-ANF). An international multidisciplinary advisory board is involved to guide the tool development on CPGs and SDM. Patient partners are involved throughout the project, considering the essential role of the patient perspective in SDM. As of February 20, 2024, we are currently assessing literature references to determine eligibility for inclusion in the scoping review (WP 1). We expect the project to be completed by December 31, 2026., Conclusions: The tool will enable CPG developers to systematically incorporate aspects of SDM into CPG development, thereby providing guideline-based support for the patient-practitioner interaction. Together, the tool for CPGs and the platform for PDAs will create a systematic link between CPGs, SDM, and PDAs, which may facilitate SDM in clinical practice., International Registered Report Identifier (irrid): DERR1-10.2196/57611., (©Lena Fischer, Fülöp Scheibler, Corinna Schaefer, Torsten Karge, Thomas Langer, Leon Vincent Schewe, Ivan D Florez, Andrew Hutchinson, Sheyu Li, Marta Maes-Carballo, Zachary Munn, Lilisbeth Perestelo-Perez, Livia Puljak, Anne Stiggelbout, Dawid Pieper. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 04.11.2024.)

Purpose: Telepharmacy (TF) represents a tool to manage the complexity related to drug therapies and to guarantee continuity of patient empowerment in transitions of care. The aim of this work is to analyze the critical issues related to the implementation of the TF service, in order to enhance its application., Results: Over 27 months, the TF service was offered to 60 patients. 48% of patients used the service (mean age=38 years; N=13 (45%) M). Although they accepted the service, 17% of patients (mean age=56 years; N=2 (20%) M) were unable to access the platform once they returned home. Poor digital skills and lack of a caregiver were barriers to service acceptance for 35% of patients (mean age=63 years; N=13 (62%) M). Overall, patients with a mean age ≥56 years did not use the service., Conclusions: TF represents an opportunity in care transitions to identify early critical issues related to drug therapy and to contribute to the integration of different levels of care. The analysis highlights that only the youngest patients (with an average age of 38 years), being more skilled in IT, have actually had access to the TF service. It will be necessary in the near future to make health teleconsultations increasingly widespread and accessible.

Background: Risk score calculators are a widely developed tool to support clinicians in identifying and managing risk for certain diseases. However, little is known about physicians' applied experiences with risk score calculators and the role of risk score estimates in clinical decision making and patient communication., Methods: Physicians providing care in outpatient community-based clinical settings ( N  = 20) were recruited to participate in semi-structured individual interviews to assess their use of risk score calculators in practice. Two study team members conducted an inductive thematic analysis using a consensus-based coding approach., Results: Participants referenced at least 20 risk score calculators, the most common being the Atherosclerotic Cardiovascular Disease Risk Calculator. Ecological factors related to the clinical system (e.g., time), patient (e.g., receptivity), and physician (e.g., experience) influenced conditions and patterns of risk score calculator use. For example, compared with attending physicians, residents tended to use a greater variety of risk score calculators and with higher frequency. Risk score estimates were generally used in clinical decision making to improve or validate clinical judgment and in patient communication to serve as a motivational tool., Conclusions: The degree to which risk score estimates influenced physician decision making and whether and how these scores were communicated to patients varied, reflecting a nuanced role of risk score calculator use in clinical practice. The theory of planned behavior can help explain how attitudes, beliefs, and norms shape the use of risk score estimates in clinical decision making and patient communication. Additional research is needed to evaluate best practices in the use of risk score calculators and risk score estimates., Highlights: The risk score calculators and estimates that participants referenced in this study represented a range of conditions (e.g., heart disease, anxiety), levels of model complexity (e.g., probability calculations, scales of severity), and output formats (e.g., point estimates, risk intervals).Risk score calculators that are easily accessed, have simple inputs, and are trusted by physicians appear more likely to be used.Risk score estimates were generally used in clinical decision making to improve or validate clinical judgment and in patient communication to serve as a motivational tool.Risk score estimates helped participants manage the uncertainty and complexity of various clinical situations, yet consideration of the limitations of these estimates was relatively minimal.Developers of risk score calculators should consider the patient- (e.g., response to risk score estimates) and physician- (e.g., training status) related characteristics that influence risk score calculator use in addition to that of the clinical system., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: EMM is or has been a consultant to Amgen, Cytokinetics, PepGen, Pfizer, and Tenaya Therapeutics and is a founder of Ikaika Therapeutics. These activities are unrelated to the content of this article. All other authors declare no conflict of interest.

The clinical and economic impact of heart failure (HF) is immense and will continue to rise due to the increasing prevalence of the disease. Despite the availability of guideline-recommended medications that improve mortality, reduce hospitalizations, and enhance quality of life, there are major gaps in the implementation of such care. Quality improvement interventions have generally focused on clinicians. While certain interventions have had modest success in improving the use of heart failure medications, they remain insufficient in optimizing HF care. Here, we discuss how patient-facing interventions can add value and supplement clinician-centered interventions. We discuss how digital health can be leveraged to create patient activation tools that create a larger, sustainable impact. Small studies have suggested the promise of digital tools for patient engagement and self-care, but there are also important barriers to the adoption of such interventions that we describe. We share key principles and strategies around the design and implementation of digital health innovations to maximize patient participation and engagement. By uniquely activating patients in their own care, digital health can unlock the full potential of both existing and new quality improvement initiatives to drive forward high-quality and equitable heart failure care., (© 2024. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Based on the UN Convention on the Rights of the Child, children and young people have the right to participate in all matters and decisions that affect them. This applies in particular when they are patients in a children's hospital. In the international context, established formats for the participation of young patients regarding health issues already exist, for example "Children's Councils" or "Young Person's Advisory Groups". In Germany, such approaches are still mostly lacking. It thus remains important to develop suitable formats that enable meaningful and effective participation of young patients in the health system. These formats must be chosen in such a way that they can realistically be implemented in clinical settings as well as in pediatric research, and that they can be sustained in the long term. In order to strengthen the consideration of children's rights in the health system, the advancement of such participatory formats as well as their sustainable implementation and evaluation are desirable., Competing Interests: Die Autorinnen/Autoren geben an, dass kein Interessenkonflikt besteht., (Thieme. All rights reserved.)

The primary aim of this systematic review is to investigate the inclusion of autistic individuals in the design process of immersive technologies. This study follows the preferred reporting items for systematic reviews and meta-analyses standards for systematic literature reviews. To ensure the research questions and subsequent stages of the review incorporate pertinent parameters, the problem, interest, context framework has also been employed. Findings highlight that, while early proponents of immersive technology emphasized the importance of user involvement in design of new technology, immaturity of the technology often limited the implementation of direct user input to the design process. Nonetheless, analysis of the literature published between 2002-2022 identified 20 studies in which substantial influence of autistic individuals and stakeholders was found in the design process of immersive technologies. The roles of autistic individuals varied from active co-designers and co-creators to essential contributors in refining prototypes and providing critical feedback, ensuring the final products align with their needs and preferences. Results underscore the need to align research and design of immersive technologies more closely with the priorities and preferences of autistic individuals. Further is needed regarding actively involving autistic individuals in the design and implementation of immersive technology applications. On this basis, we maintain that more inclusive and effective deployment of immersive technologies is needed in order to ensure that resultant technologies are fit for purpose and address the actual needs of the autistic community., (© 2023. The Author(s).)

Background: Diabetes self-management education and support can be effectively and efficiently delivered in primary care in the form of shared medical appointments (SMAs). Comparative effectiveness of SMA delivery features such as topic choice, multi-disciplinary care teams, and peer mentor involvement is not known., Objective: To compare effects of standardized and patient-driven models of diabetes SMAs on patient-level diabetes outcomes., Design: Pragmatic cluster randomized trial., Participants: A total of 1060 adults with type 2 diabetes in 22 primary care practices., Interventions: Practice personnel delivered the 6-session Targeted Training in Illness Management (TTIM) curriculum using either standardized (set content delivered by a health educator) or patient-driven SMAs (patient-selected topic order delivered by health educators, behavioral health providers [BHPs], and peer mentors)., Main Measures: Outcomes included self-reported diabetes distress and diabetes self-care behaviors from baseline and follow-up surveys (assessed at 1st and final SMA session), and HbA1c, BMI, and blood pressure from electronic health records. Analyses used descriptive statistics, linear regression, and linear mixed models., Key Results: Both standardized and patient-driven SMAs effectively improved diabetes distress, self-care behaviors, BMI (- 0.29 on average), and HbA1c (- 0.45% (mmol/mol) on average, 8.3 to 7.8%). Controlling for covariates, there was a small, significant effect of condition on overall diabetes distress in favor of standardized SMAs (F(1,841) = 4.3, p = .04), attributable to significant effects of condition on emotion and regimen distress subscales. There was a small, significant effect of condition on diastolic blood pressure in favor of standardized SMAs (F(1,5199) = 4.50, p = .03). There were no other differences between conditions., Conclusions: Both SMA models using the TTIM curriculum yielded significant improvement in diabetes distress, self-care, and HbA1c. Patient-driven diabetes SMAs involving BHPs and peer mentors and topic selection did not lead to better clinical or patient-reported outcomes than standardized diabetes SMAs facilitated by a health educator following a set topic order., Nih Trial Registry Number: NCT03590041., Competing Interests: Declarations: Conflict of Interest: The authors declare no competing interests. Disclaimer: The views, statements, and opinions presented in this work are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Background: Medication safety issues occur frequently among older-adult patients with chronic diseases during the transition from the hospital to their homes. Patient participation in medication safety has been found to be an effective measure for improving patient safety. However, few studies have been conducted on the safety of older-adult patients with chronic disease during the hospital to family transition period. This study aimed to understand the experiences and perceptions of such patients regarding participation in medication safety during the hospital to family transition period and to explore the actual situation and obstacles during this period in the Chinese context., Methods: A descriptive, qualitative research approach was adopted using purposive sampling. Eighteen patients with chronic disease (aged 61-84 years) participated, all of whom were in the period of transition from hospital to home. Data were collected through semi-structured face-to-face interviews and analysed using directed qualitative content analysis., Results: Four themes and 12 sub-themes were identified in this study. The four themes were participation in medication decision-making, participation in medication self-management, participation support, and barriers to patient participation., Conclusions: Patient participation is important in ensuring medication safety during the hospital to family transition period. This study highlights that older-adult patients' participation in medication safety includes three aspects: participation in medication decision-making, participation in medication self-management, and participation support. Health literacy, medical communication, and family care support are the key factors affecting patient participation in medication safety. Effective intervention strategies for this patient group during the transition period would target improving patients' cognition, health literacy, doctor-prescription communication, and family care support to encourage patients to be more actively involved in the process of drug treatment., (© 2024. The Author(s).)

Background: While patient and public involvement and engagement (PPIE) is now seen as a cornerstone of mental health research, young people's involvement in PPIE faces limitations. Work and school demands and more limited independence can make it challenging for young people to engage with PPIE. Lack of ability or desire to attend face-to-face meetings or group discussions can further compound this difficulty. The VoiceIn app and digital platform were codeveloped by a multidisciplinary team of young people, mental health researchers, and software designers, and enables young people to engage directly with PPIE opportunities via a mobile app., Objective: This paper aims to describe how VoiceIn was developed through a series of co-design workshops with relevant stakeholders, specifically (1) how the initial design of VoiceIn was informed and driven by focus groups with young people, mental health professionals, and PPIE leads; (2) how VoiceIn was refined through collaboration with the aforementioned stakeholders; (3) the priorities for an app to support PPIE; (4) the key features necessary in the PPIE app; and (5) the recommended next steps in testing and deploying the digital platform., Methods: Initial co-design workshops took place with young people, mental health professionals, and PPIE leads to identify key features of an app to support PPIE. A series of VoiceIn design prototypes were developed and iterated based on the priorities and preferences of the stakeholders. The MoSCoW (must have, should have, could have, won't have) prioritization method was used throughout the process to identify priorities across the different stakeholder groups., Results: Co-design with young people, mental health professionals, and PPIE leads supported the successful development and improvement of the VoiceIn app. As a result of this process, key features were identified, including allowing for various modes of providing feedback (eg, polls and comments), reviewing project updates, and expressing interest in categories of research. The researcher platform was developed to support multimedia uploads for project descriptions; a jargon detector; a dedicated section for providing project updates; and a visually appealing, user-friendly design. While all stakeholder groups emphasized the importance of allowing app users to engage with the app in various ways and for there to be ongoing progress updates, group differences were also noticed. Young people expressed a desire for incentives and rewards for engaging with the app (eg, to post on their public social media profiles), and mental health professionals and PPIE leads prioritized flexibility in describing the project and its PPIE needs., Conclusions: A co-design approach was pivotal to the development of the VoiceIn app. This collaborative approach enabled the app to meet the divergent needs of young people, mental health professionals, and PPIE leads. This process mirrored the aspirations of PPIE initiatives by cocreating a digital health research tool with key stakeholders., (© Alison Branitsky, Penny Bee, Sandra Bucci, Karina Lovell, Simon Foster, Pauline Whelan. Originally published in JMIR Human Factors (https://humanfactors.jmir.org).)

Purpose: This study reports the findings from the ADAPT randomized controlled trial (RCT), concerning the impact of a digital tool for supported self-management in people affected by breast cancer on patient activation as the primary outcome, with health-related quality of life (HRQoL), and health status as secondary outcomes., Methods: Women with early-stage breast cancer were randomly assigned to standard care (control) or standard care in addition to the breast cancer digital tool (intervention). Data were collected using a demographic questionnaire, the Patient Activation Measure (PAM-13), the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), and the EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L) at baseline, 6 weeks, 3 months, 6 months, and 1 year from diagnosis. Linear mixed effect model regression was used to assess the effect of the digital tool over the first year from diagnosis while correcting for intra-participant correlation., Results: A total of 166 participants were included, with 85 being randomized into the intervention. No significant differences (p > 0.05) in the PAM-13 scores, EORTC QLQ-C30 scales (global QoL, physical functioning, emotional functioning, pain, fatigue), and EQ-5D-5L Index between the control and intervention groups were observed. It is important to note that there was significant non-adherence within the intervention group., Conclusion: The breast cancer digital tool had no statistically significant impact on patient activation, HRQoL, and health status over time compared to standard care alone in women with early-stage breast cancer. Future research should focus on identifying and addressing barriers to digital tool engagement to improve efficacy. Clinical trial information The study was registered at https://clinicaltrials.gov (NCT03866655) on 7 March 2019 ( https://clinicaltrials.gov/study/NCT03866655 )., (© 2024. The Author(s).)

Guidelines and consensus in cardiovascular care in recent years have called for patients to be more involved in their care, which can be achieved by becoming more empowered. Yet, there is little clarity on how healthcare professionals can help the patients achieve this goal. The present paper defines patient empowerment, its benefits, and the different strategies that can be used in healthcare to empower them. Moreover, potential barriers in the empowering process are also discussed., Competing Interests: Conflict of interest: none declared., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: This study aimed to systematically evaluate interventions and effects that promote involvement in medication safety among older people with chronic diseases and to provide new ideas and references for developing standardized and effective intervention strategies to improve patient involvement in medication safety., Methods: A comprehensive literature search across twelve databases was conducted using both computerized and manual methods. The search was limited to studies designated as randomized controlled trials or quasi-experimental studies and was conducted from the time of each database's inception until September 2023. Two researchers independently carried out qualitative analyses, which included screening the literature, extracting the data, and assessing the quality of the selected studies., Results: This study included five studies involving a total of 388 participants, with interventions aimed at enhancing patient involvement in medication safety, including interactive health education, motivational interviewing, and medication reconciliation. However, direct evidence confirming the positive impact of these interventions in promoting medication safety behaviors among older people with chronic diseases is still lacking., Conclusions: Patient involvement in medication safety behaviors is essential for promoting healthy aging. Medication education, motivational interviewing, and medication reconciliation may improve the willingness and ability of older people to participate. However, limitations in the methodological quality of current studies prevent drawing definitive conclusions, highlighting the urgent need for more high-quality research., Trial Registration: PROSPERO number CRD42023494924., (© 2024. The Author(s).)

The PartnerREC network at the Geneva University Hospitals aims to facilitate the collaboration between researchers and patient partners in any type of clinical research, mainly those led at the HUG. It is the result of a coconstruction process initiated in 2019 by physicians, research professionals, cantonal research ethics committee members, a lawyer, and patient partners. The network implemented four initiatives: a) a website providing information to researchers and patients participating to research projects; b) personalized counseling for researchers to explore partnership opportunities in their own research projects; c) a training program related to patient partnership in research developed together with different partners in French-speaking Switzerland and d) its own research program on partnership in clinical research., Competing Interests: Les auteures font toutes partie du réseau PartnerREC.

Background: Digital interventions to improve retention in HIV care are critical to ensure viral suppression and prevent further transmission. AIDS Healthcare Foundation Healthcare Centers are centers across the United States that provide primary HIV care. Traditionally, the Healthcare Centers conduct phone calls with patients to schedule and confirm appointments, as well as share laboratory results. In 2017, Healthvana piloted a digital platform at AIDS Healthcare Foundation Healthcare Centers to send patients SMS text message appointment reminders and allow patients to review their upcoming appointment and view their laboratory results in the web-based patient portal., Objective: A national implementation in 15 US states and Washington, DC, of this digital intervention pilot by Healthvana aims to determine whether SMS appointment reminders and web-based patient portal logins improved retention in care compared to traditional methods., Methods: A retrospective analysis of 40,028 patients living with HIV was conducted at the 61 AIDS Healthcare Foundation Healthcare Centers between January 2, 2017, and May 22, 2018. Patients were invited to enroll in Healthvana's digital intervention pilot, allowing for a natural, organization-wide case-control study. Separate binary logistic regression models evaluated the relationship between receiving SMS appointment reminders and completing scheduled appointments, as well as the relationship between logging into the web-based patient portal and completing scheduled appointments. Four scheduled consecutive appointments for each patient were included in the analysis to account for 1 full year of data per patient., Results: Patients who received the SMS appointment reminder were 1.7 times more likely to complete appointment 1 compared to patients who did not receive the SMS appointment reminder (P<.001). In addition, patients who received the SMS appointment reminder were 1.6 times more likely to complete appointment 2 (P<.001), 1.7 times more likely to complete appointment 3 (P<.001), and 1.8 times more likely to complete appointment 4 (P<.001) compared to patients who did not receive the SMS appointment reminder. Patients who logged in to the web-based patient portal prior to their scheduled appointment were 7.4 times more likely to complete appointment 1 compared to patients who did not log in (P<.001). In addition, patients who logged in to the web-based patient portal prior to their scheduled appointment were 3.6 times more likely to complete appointment 2 (P<.001), 3.2 times more likely to complete appointment 3 (P<.001), and 2.8 times more likely to complete appointment 4 (P<.001) compared to patients who did not log in., Conclusions: HIV primary care appointment completion was higher when patients engaged with Healthvana's digital platform. Digital technology interventions to ensure patients complete their scheduled HIV care appointments are imperative to curb the HIV epidemic., (©Adam Carl Sukhija-Cohen, Henna Patani, Michael Foxworth Blasingame, Kathy Linh Vu, Ramin Bastani. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 02.10.2024.)

Cancer in teenagers and young adults (TYAs) coincides with major life transitions and presents unique psychosocial challenges. Understanding the experiences and needs of TYAs is critical. TYAs want to play an active role in improving cancer for TYAs; however, few opportunities exist for TYAs to do so. Using a tri-partite methodology, an international team collaborated with four TYA co-researchers in this pilot study to explore how performative staging strategies help convey TYA experiences with cancer. Using creative video, TYA co-researchers shared cancer experiences and insights in novel, impactful ways. The process provided intrinsic benefits for co-researchers to connect with other TYAs and creatively share their experiences and perspectives. Furthermore, it provided space for dialogue between TYAs and cancer care allies where TYAs could convey the nuances of their cancer experiences and how cancer care could be improved. This tri-partite methodology can support TYAs to actively engage in a process of connection, reflection, creation, and dissemination to improve cancer experiences for TYAs.

Aim: To implement shared decision-making (SDM) through a patient decision aid (PtDA) for the initiation of palliative care (PC) in end-of-life (EOL) cancer patients., Methodology: A comprehensive Scoping Review was conducted on SDM in PubMed, CINAHL and PsycInfo. An evidence-based implementation of PtDAs was created using the Joanna Briggs Institute framework, which followed rigorous pillars: (1) context, (2) facilitation and (3) evaluation., Results: Fifteen studies were identified and categorised into (1) Implementation characteristics and (2) Strategies for implementing SDM in terminally ill cancer patients. SDM should consider the decision-making location, optimal timing, participants and decision type. Strategies include professional training, PtDAs and implementation programmes. A PtDA implementation protocol in video format for deciding to initiate PC is proposed, following International Patient Decision Aid Standards (IPDAS) and Clinical Practice Guidelines (CPG)., Conclusions: SDM implementation should be guided by evidence-based methodological models justifying and structuring its execution, especially in complex and interdisciplinary contexts. National or international frameworks facilitate the adoption of health innovations, such as PtDAs, benefiting patients and improving their usage., Practice Implications: SDM is not just a concept but an important approach to the Care of cancer patients at EOL, enhancing patient satisfaction and improving care quality. The success and sustainability of SDM hinge on the fundamental aspects of staff training, interdisciplinary collaboration and ongoing evaluation. The lack of specific aid in Spanish underscores the immediate need for local development. Further research is needed in this area, as most reviewed studies did not measure SDM effectiveness in diverse hospital settings., Patient or Public Contribution: This proposal was developed based on the experience and input of the nursing staff from the healthcare service where it is intended to be implemented., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: Health care professionals use mobile apps to support patients' rehabilitation after total hip or knee arthroplasty. Understanding patient engagement in such mobile health interventions can help tailor these interventions to better support patients., Objective: This study aimed to investigate patient engagement in a mobile app-based arthroplasty rehabilitation program and to investigate the association between patient engagement and their characteristics., Methods: Data were extracted from a pool of 42 participants in the experimental arm of a randomized controlled trial that used a mobile app (WeChat [Tencent Holdings Limited])-based program to support patients' rehabilitation after total hip or knee arthroplasty. The primary outcomes were the number of days the participants accessed the program and completed recommended rehabilitation tasks. Secondary outcomes included data on the participants' posts on a discussion forum, messages sent by the participants, access to the program components, and reading and sharing the program content. Generalized linear models were used to analyze the association between patient engagement and personal characteristics., Results: The participants reported in a rehabilitation diary accessing the program on a mean of 5.2 (SD 2) days per week and completing recommended rehabilitation tasks on a mean of 6.5 (SD 0.8) days per week. The majority (31/42, 74%) posted on the discussion forum, with a mean of 18.1 (SD 21.2) posts. Most participants (37/42, 88%) sent messages to health care professionals, with a mean of 14 (SD 15.9) messages. The program components were visited for a total of 525 times. The program content was read 898 times and shared 82 times in total. Generalized linear models showed that both primary outcomes, the number of days the participants accessed the program (B=6.46, 95% CI 1.98-15.35; χ 2 1 =11.1, P=.001) and the number of days they completed rehabilitation tasks (B=2.65, 95% CI 0.45-5.48; χ 2 1 =5.7, P=.02), were positively associated with having a high school education or above. In addition, the number of posts on the discussion forum was positively associated with living with family, having a high school education or above, undergoing total knee arthroplasty, having comorbidities, and the score of self-efficacy but was negatively associated with age. The number of messages sent by the participants was positively associated with having a high school education or above, having comorbidities, and the score of self-efficacy., Conclusions: Patient engagement in mobile arthroplasty rehabilitation is associated with their education level, cohabitation status, age, type of surgery, presence of comorbidities, and sense of self-efficacy. Program developers can consider these characteristics and use strategies, such as family involvement, in the design of mobile arthroplasty rehabilitation programs to enhance patient engagement in such interventions., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621000867897; https://tinyurl.com/mtdw25fp., (©Qingling Wang, Regina Lai-Tong Lee, Sharyn Hunter, Aiyong Zhu, Sally Wai-Chi Chan. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 01.10.2024.)

Objective: The objective was to systematically review all studies focusing on barriers, facilitators, and tools currently available for shared decision making (SDM) in emergency departments (EDs)., Background: Implementing SDM in EDs seems particularly challenging, considering the fast-paced environment and sometimes life-threatening situations. Over 10 years ago, a previous review revealed only a few patient decision aids (PtDAs) available for EDs., Methods: Literature searches were conducted in MEDLINE, Embase, and Cochrane library, up to November 2023. Observational and interventional studies were included to address barriers or facilitators for SDM or to investigate effects of PtDAs on the level of SDM for patients visiting an ED., Results: We screened 1946 studies for eligibility, of which 33 were included. PtDAs studied in EDs address chest pain, syncope, analgesics usage, lumbar puncture, ureterolithiasis, vascular access, concussion/brain bleeding, head-CT choice, coaching for elderly people, and activation of patients with appendicitis. Only the primary outcome was meta-analyzed, showing that PtDAs significantly increased the level of SDM (18.8 on the 100-point OPTION scale; 95% CI 12.5-25.0). PtDAs also tended to increase patient knowledge, decrease decisional conflict and decrease health care services usage, with no obvious effect on overall patient satisfaction. Barriers and facilitators were identified on three levels: (1) patient level-emotions, health literacy, and their own proactivity; (2) clinician level-fear of medicolegal consequences, lack of SDM skills or knowledge, and their ideas about treatment superiority; and (3) system level-time constraints, institutional guidelines, and availability of PtDAs., Conclusions: Circumstances in EDs are generally less favorable for SDM. However, PtDAs for conditions seen in EDs are helpful in overcoming barriers to SDM and are welcomed by patients. Even in EDs, SDM is feasible and supported by an increasing number of tools for patients and physicians., (© 2024 Society for Academic Emergency Medicine.)

Rationale: Advanced practice physiotherapy roles (Advanced Physiotherapy Practitioners [APPs] and First Contact Physiotherapists [FCPs]) are pivotal in supporting patients to manage their musculoskeletal (MSK) conditions. Having a greater understanding of how decisions are made by these practitioners will inform competency frameworks and improve the provision of patient-centred care., Aim: To evaluate the current knowledge, views and use of shared decision-making in MSK advanced physiotherapy practice in the United Kingdom., Methods: A cross-sectional survey using an online questionnaire was used to collect demographic information, knowledge, views and self-reported use of shared decision-making (SDM) of APPs and FCPs who work with adults with MSK disorders in the United Kingdom., Results: Responses from 49 participants (25 APPs and 24 FCPs) were included in the study. In total, 80% of participants had received SDM training and overall high levels of knowledge were shown. Only 12% of participants used a communication model to facilitate SDM. In total, 80% of participants reported making decisions together with the patient either always or most of the time. FCPs favoured a more patient-led approach to decision-making compared to APPs who favoured collaborative decision-making. The most commonly reported barriers to SDM included lack of time, lack of patient education resources, lack of access to patient decision aids and treatment pathway restrictions., Conclusions: The responses in this study showed that overall APPs and FCPs have good knowledge of SDM and report routine use of collaborative and patient-led decision-making approaches., (© 2024 The Author(s). Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Study Aims: The present paper aimed at discussing how the process of decision-making should be taken care of in healthcare services., Methods: This is a position paper based on a review of the relevant literature about meaning-making processes in medical encounters and psychotherapy., Discussion: Authors argued that choice options could be perceived as meaningful by patients if their uncertainties were taken into account and grounded on mutual understanding and reciprocal trust. To this end, any decision-making process should satisfy the patient's legitimate expectations by making choices and habits compatible., Conclusion: In depht analysis of meaning-making processes is crucial for better refining good practices of shared decision-making., (© 2024 John Wiley & Sons Ltd.)

Perspectives of healthcare have, in past decades, focused more on active citizenship, human rights and empowerment. Healthcare consumer involvement as a concept is still unstructured and consumers have no apparent opportunities to participate in their care processes. The focus is often on the expertise of professionals, even if mental health consumers are willing to become involved and have sufficient decisional capacity. The aim of this integrative literature review was to construct an understanding of consumer perceptions and guiding frameworks of consumer involvement. There was no previous synthesis of mental health consumer perceptions combined with guiding frameworks. An integrative review methodology was employed, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the 18 studies included was analysed with the Whittemore and Knafl approach. By following Braun and Clarke's guidelines, an inductive thematic analysis was conducted to collate the themes from the selected papers. Mental health consumers' perceptions of involvement included expectations of person-centred care, such as respect, dignity, equal interaction, supportive environments and being part of a community. This research did not find any single established framework to give clear guidelines for consumer involvement in mental healthcare, but similar determinants describing various frameworks were uncovered. This review also shows how the terminology has changed throughout the years. The perceptions of mental health consumers need to be considered to enable the implementation of person-centredness from guidelines through to practice. Paying more attention to the education of professional mental health caregivers and the involvement of mental health consumers in their care provides better opportunities to co-develop successful mental health services and recovery processes., (© 2024 The Authors. International Journal of Mental Health Nursing published by John Wiley & Sons Australia, Ltd.)

Background: Patient Organizations (POs) are an important support factor in helping chronically ill patients cope with their illness. Patient involvement in the management of their disease helps to achieve the best possible care for the patient, streamline the work of healthcare providers, shape healthcare policy, and even influence the structures of healthcare systems. The perspective of chronically ill patients on the activities and services provided by patient organizations has not been evaluated yet. This study aimed to identify and map the services and activities of all types of non-profit patient organizations from the perspective of chronically ill patients so that they can be integrated as an integral part of the healthcare system., Methods: Nineteen services and activities of patient organizations were sampled from Israeli patient organizations and scientific literature. These services and activities were evaluated by chronically ill patients in Israel. Patient-Oriented Questionnaires (POQ) were distributed among patients with chronic diseases (N = 1395) using snowball sampling., Results: Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (four items), and medical information (three items). CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058., Conclusions: Well-organized patient organizations are an important pillar in reformed healthcare systems. They can serve as the social arm of the healthcare system and as an intermediary between patients and healthcare institutions. We narrowed down twelve services and activities given by patient organizations that were important to chronically ill patients in Israel. patient organizations can utilize patient needs or preferences into clinical practice and influence health policy planning, patient-caregiver relationships, research and even healthcare costs. patient organizations recognition by the healthcare system, and establishment of a national patient council will help to realize these processes., (© 2024. The Author(s).)

Background: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs., Methods: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations., Results: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields., Conclusion: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process., (© 2024. The Author(s).)

Background: Digital health care apps, including digital therapeutics, have the potential to increase accessibility and improve patient engagement by overcoming the limitations of traditional facility-based medical treatments. However, there are no established tools capable of quantitatively measuring long-term engagement at present., Objective: This study aimed to evaluate an existing engagement index (EI) in a commercial health management app for long-term use and compare it with a newly developed EI., Methods: Participants were recruited from cancer survivors enrolled in a randomized controlled trial that evaluated the impact of mobile health apps on recovery. Of these patients, 240 were included in the study and randomly assigned to the Noom app (Noom Inc). The newly developed EI was compared with the existing EI, and a long-term use analysis was conducted. Furthermore, the new EI was evaluated based on adapted measurements from the Web Matrix Visitor Index, focusing on click depth, recency, and loyalty indices., Results: The newly developed EI model outperformed the existing EI model in terms of predicting EI of a 6- to 9-month period based on the EI of a 3- to 6-month period. The existing model had a mean squared error of 0.096, a root mean squared error of 0.310, and an R 2 of 0.053. Meanwhile, the newly developed EI models showed improved performance, with the best one achieving a mean squared error of 0.025, root mean squared error of 0.157, and R 2 of 0.610. The existing EI exhibited significant associations: the click depth index (hazard ratio [HR] 0.49, 95% CI 0.29-0.84; P<.001) and loyalty index (HR 0.17, 95% CI 0.09-0.31; P<.001) were significantly associated with improved survival, whereas the recency index exhibited no significant association (HR 1.30, 95% CI 1.70-2.42; P=.41). Among the new EI models, the EI with a menu combination of menus available in the app's free version yielded the most promising result. Furthermore, it exhibited significant associations with the loyalty index (HR 0.32, 95% CI 0.16-0.62; P<.001) and the recency index (HR 0.47, 95% CI 0.30-0.75; P<.001)., Conclusions: The newly developed EI model outperformed the existing model in terms of the prediction of long-term user engagement and compliance in a mobile health app context. We emphasized the importance of log data and suggested avenues for future research to address the subjectivity of the EI and incorporate a broader range of indices for comprehensive evaluation., (©Yae Won Tak, Jong Won Lee, Junetae Kim, Yura Lee. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 09.09.2024.)

Competing Interests: Conflict of interest: none declared.

Background: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor., Objective: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs., Methods: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported., Results: The median proportion of participants retained in the study across the 6 studies was 77.2% (IQR 72.6%-88%). The probability of staying in the study stayed above 80% for all studies during the first month of study participation and stayed above 50% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80% and 90%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50%, IQR 20%-75%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies., Conclusions: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal DHT designs is needed so that these new tools can be perceived as personally valuable to the end user., (©Sarah M Goodday, Emma Karlin, Alexa Brooks, Carol Chapman, Christiana Harry, Nelly Lugo, Shannon Peabody, Shazia Rangwala, Ella Swanson, Jonell Tempero, Robin Yang, Daniel R Karlin, Ron Rabinowicz, David Malkin, Simon Travis, Alissa Walsh, Robert P Hirten, Bruce E Sands, Chetan Bettegowda, Matthias Holdhoff, Jessica Wollett, Kelly Szajna, Kallan Dirmeyer, Anna Dodd, Shawn Hutchinson, Stephanie Ramotar, Robert C Grant, Adrien Boch, Mackenzie Wildman, Stephen H Friend. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.09.2024.)

Background Patient Assessment of Care in Chronic Conditions (PACIC+), included in some Australian guidelines, has been shown reliable for measuring patient engagement and perception of their care in primary care settings. Various studies have focussed on PACIC+ use in specific conditions. This study aims to expand PACIC+ to measure patient empowerment to self-manage their chronic condition and validate it in the broader Australian primary care population. This study aims to evaluate internal consistency and reliability of PACIC+ and six new supplementary items proposed to assess patient wellbeing and empowerment to self-manage their chronic condition. Methods A repeated-measures correlation design study assessed the expanded PACIC+ over three time-points. Particpants were patients with at least one chronic disease, referred by consultant physician, or recruited by advertisement posters in hospital clinic areas. Results PACIC+ (26-item) had acceptable internal consitency (Cronbach's alpha 0.96). Test-retest reliability (Time-1 and 2, P r (48)=0.43; and New supplementary items: Confidence r (48)=0.54; Understanding r (48)=0.62; Support r (48)=0.43; Overall Health r (48)=0.42; Overall Health Change r (48)=-0.31, P =0.03; and Acute Episodes of Care in 1-month r (48)=0.42, P Conclusions The expanded PACIC+ is an improved psychometric tool providing for the patient's voice in a shared health journey. It is a valid, reliable tool to monitor and measure self-management of chronic conditions in Australian population clinic and primary healthcare settings.

Pharmacist-led interventions are pivotal in identifying and resolving potential adverse drug events (pADEs) while enhancing blood pressure control and medication adherence through educational and counseling interventions. This practice brief outlines the outcomes of the Blue Bag Initiative (BBI), which enhanced pharmacist-led comprehensive medication reviews (CMRs) across community pharmacies in Virginia under Center for Disease Control Cooperative Agreement NU58DP006535. BBI yielded a rate of 131.6 pADEs identified per 100 participants and demonstrated cost savings of 1 to 3 million dollars for the health care system. This report underscores the significance of a standardized, pharmacist-led CMR as integral to interdisciplinary team-based care models within physician practices, facilitating medication therapy management implementation. Enhanced CMR can improve cardiovascular health outcomes while reducing health care expenditures by augmenting patient engagement and medication adherence. This study thus highlights the efficacy and potential of pharmacist-led interventions in increasing access to and optimizing patient care., Competing Interests: The authors have indicated no potential conflicts of interest to disclose., (Copyright © 2024 The Authors. Published by Wolters Kluwer Health, Inc.)

Purpose: The purpose of this research was to cocreate with patients and the public a set of evidence-informed guiding principles for their authentic, responsive, ongoing, and sustainable engagement in the mission, goals, curriculum, and delivery of medical education., Method: A set of guiding principles of relevance to medical education was identified from the literature. Eight focus groups with patients and community members representing a wide variety of perspectives were conducted in April and May 2022. Participants reviewed, prioritized, and discussed the principles and described successful engagement, resulting in 8 guiding principles in priority order. A summary report was circulated to participants for feedback. The principles were reviewed and endorsed by senior leaders in the medical school., Results: The 8 focus groups were attended by 38 people (age range, mid-20s to postretirement; 7 male, 27 female, and 4 unknown gender). Accountability (19%), inclusion (18%), reciprocity (17%), and partnership and shared decision-making (14%) were chosen as the most important principles. Participants want evidence that their contributions are valued and have made a difference. They want the medical school to include and support a diversity of perspectives that reflect the populations being served by the health care system. They want the medical school to invest in building trusting and respectful long-term relationships with patients and the public., Conclusions: The guiding principles could be used by medical schools as a starting point to build relationships with their local communities to increase the authentic and sustainable engagement of patients and the public in the educational mission of the medical school., (Copyright © 2024 the Association of American Medical Colleges.)

Background: Implementation of shared decision-making in antenatal care has had limited exploration., Objective: To assess what is known about shared decision-making in antenatal care., Search Strategy: Five databases were searched (1997-2022) limited to English language studies from OECD countries., Data Collection and Analysis: A data collection table was constructed with findings from 32 papers. A narrative synthesis was conducted with subsequent thematic analysis of included papers., Main Results: Four areas of decision-making were identified with six themes revealing enablers and barriers to shared decision-making in antenatal care., Conclusion: Implementation of shared decision-making requires continuity, time and personalisation of care., (© 2023 The Authors. Birth published by Wiley Periodicals LLC.)

Objectives: This feasibility study evaluated the effectiveness of Support-Engage-Empower-Diabetes (SEE-Diabetes), a patient-centered educational tool designed to promote shared decision-making of diabetes management in older adults. We aimed to assess SEE-Diabetes's ability to facilitate patient engagement and collaborative goal setting, as measured by the Observational Patient Involvement (OPTION) scale and Shared Decision-Making Questionnaire (SDM-Q-Doc). We hypothesized that these instruments would effectively differentiate between healthcare providers who actively leveraged SEE-Diabetes to guide patient-centric conversations and set goals compared to those who did not., Methods: SEE-Diabetes, developed through a 4-year user-centered design process, was employed in simulated clinical encounters at the University of Missouri Health Care. We conducted an analysis of 12 clinical encounters using video recordings. This analysis involved three simulated patients and four providers, two internals and two externals, utilizing a mixed-methods approach. We assessed the decision-making process using SEE-Diabetes by SDM-Q-Doc, OPTION scale, and conversation analysis., Results: The average scores for the SDM-Q-Doc and the OPTION scale, out of a possible 100, were 52.6 and 75.9, respectively. Our findings revealed that active provider engagement with SEE-Diabetes during patient interactions served as an effective medium to facilitate shared decision-making and to set patient-centered goals. Providers who actively utilized SEE-Diabetes to guide conversations, ask open-ended questions, and incorporate patient input into goal setting demonstrated significantly higher OPTION and SDM-Q-Doc scores compared to those who used the tool less frequently or primarily for documentation purposes. Providers expressed positive feedback, highlighting its conciseness, patient-centricity, and optimism about integrating SEE-Diabetes into their future practices., Conclusion: SEE-Diabetes showed considerable promise in improving interactions between patients and providers, presenting an innovative approach to diabetes management for older adults. This tool has the potential to not only close communication gaps but also enable patients to take a more active role in their healthcare decisions., (© 2024 John Wiley & Sons Ltd.)

Introduction: Tele-pulmonary rehabilitation is increasingly advocated but cannot completely substitute for in-person services for chronic conditions. Adherence to Pulmonary rehabilitation (PR) remains low in chronic obstructive pulmonary disease (COPD) patients. Shared decision-making (SDM) promotes patients' participation in PR decisions and helps patients and healthcare providers to jointly make decisions that patients are informed and aligned with patient preferences and values, which are critical for patient adherence to PR., Objective: This study aimed to develop a hybrid in-person and virtual model of home-based PR services for older COPD patients and study the effectiveness of the patient decision aid (PDA)-supported recurring SDM intervention on patient adherence to PR, rehabilitation outcomes, and decision-related outcomes, as well as to explore the mechanisms of the intervention on PR adherence., Methods: A total of 78 older COPD patients were randomly assigned to the PR group ( n  = 39) or PDA-PR group ( n  = 39). Both groups were conducted hybrid in-person and virtual PR intervention for 3 months. The primary outcomes were patients' quality of life and PR adherence. The secondary outcomes were dyspnea symptoms, exercise self-efficacy, knowledge, and decision-related outcomes., Results: A total of 72 participants completed the 3-month PR program. There were statistically significant differences in PR adherence ( p  = 0.033), COPD assessment test (CAT) scores ( p  = 0.016), PR knowledge ( p  < 0.001), decision self-efficacy ( p  < 0.001), decision conflict ( p  < 0.001), and decision regret scores ( p  = 0.027) between the two groups. The modified Medical Research Council Dyspnoea scale (mMRC) score was significantly decreased only in PDA-PR group ( p  = 0.011). No statistically significant differences were observed in St George's Respiratory Questionnaire (SGRQ) score ( p  = 0.078), Exercise Self-Regulatory Efficacy Scale (Ex-SRES) score ( p  = 0.29) and COPD knowledge ( p  = 0.086) between the two groups. PR value score had a significant effect on adherence to PR ( p  = 0.007) and CAT score ( p  = 0.028)., Conclusions: PDA supported recurring SDM intervention was helpful in maintaining older COPD patients' PR adherence and had advantages in improving quality of life, enhancing PR knowledge, decision self-efficacy, and reducing decision conflict and decision regret, but did not improve SGRQ and Ex-SRES. PR value score influenced patients' rehabilitation adherence and quality of life., Trial Registration: Chinese Clinical Trial Registry (ChiCTR): ChiCTR1900028563; http://apps.who.int/trialsearch/default.aspx., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Background: Respectful maternity care includes shared decision-making (SDM). However, research on SDM is lacking from the intrapartum period and instruments to measure it have only recently been developed. TeamBirth is a quality improvement initiative that uses team huddles to improve SDM during labor and birth. Team huddles are structured meetings including the patient and full care team when the patient's preferences, care plans, and expectations for when the next huddle will occur are reviewed., Methods: We used patient survey data (n = 1253) from a prospective observational study at four U.S. hospitals to examine the relationship between TeamBirth huddles and SDM. We measured SDM using the Mother's Autonomy in Decision-Making (MADM) scale. Linear regression models were used to assess the association between any exposure to huddles and the MADM score and between the number of huddles and the MADM score., Results: In our multivariable model, experiencing a huddle was significantly associated with a 3.13-point higher MADM score. When compared with receiving one huddle, experiencing 6+ huddles yielded a 3.64-point higher MADM score., Discussion: Patients reporting at least one TeamBirth huddle experienced significantly higher SDM, as measured by the MADM scale. Our findings align with prior research that found actively involving the patient in their care by creating structured opportunities to discuss preferences and choices enables SDM. We also demonstrated that MADM is sensitive to hospital-based quality improvement, suggesting that future labor and birth interventions might adopt MADM as a patient-reported experience measure., (© 2024 Wiley Periodicals LLC.)

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases., Competing Interests: Ivan Miguel Pires is an Academic Editor for PeerJ Computer Science., (© 2024 Denysyuk et al.)

Introduction: Digital mental health interventions (DMHIs) overcome traditional barriers enabling wider access to mental health support and allowing individuals to manage their treatment. How individuals engage with DMHIs impacts the intervention effect. This review determined whether the impact of user engagement was assessed in the intervention effect in Randomised Controlled Trials (RCTs) evaluating DMHIs targeting common mental disorders (CMDs)., Methods: This systematic review was registered on Prospero (CRD42021249503). RCTs published between 01/01/2016 and 17/09/2021 were included if evaluated DMHIs were delivered by app or website; targeted patients with a CMD without non-CMD comorbidities (e.g., diabetes); and were self-guided. Databases searched: Medline; PsycInfo; Embase; and CENTRAL. All data was double extracted. A meta-analysis compared intervention effect estimates when accounting for engagement and when engagement was ignored., Results: We identified 184 articles randomising 43,529 participants. Interventions were delivered predominantly via websites (145, 78.8%) and 140 (76.1%) articles reported engagement data. All primary analyses adopted treatment policy strategies, ignoring engagement levels. Only 19 (10.3%) articles provided additional intervention effect estimates accounting for user engagement: 2 (10.5%) conducted a complier-average-causal effect (CACE) analysis (principal stratum strategy) and 17 (89.5%) used a less-preferred per-protocol (PP) population excluding individuals failing to meet engagement criteria (estimand strategies unclear). Meta-analysis for PP estimates, when accounting for user engagement, changed the standardised effect to -0.18 95% CI (-0.32, -0.04) from - 0.14 95% CI (-0.24, -0.03) and sample sizes reduced by 33% decreasing precision, whereas meta-analysis for CACE estimates were - 0.19 95% CI (-0.42, 0.03) from - 0.16 95% CI (-0.38, 0.06) with no sample size decrease and less impact on precision. DISCUSSION: Many articles report user engagement metrics but few assessed the impact on the intervention effect missing opportunities to answer important patient centred questions for how well DMHIs work for engaged users. Defining engagement in this area is complex, more research is needed to obtain ways to categorise this into groups. However, the majority that considered engagement in analysis used approaches most likely to induce bias., (© 2024. The Author(s).)

This is an observational study in which we evaluated current levels of risk communication (RC) among gynaecological oncologists and their view on the Mapping All Patient Probabilities in Numerical Graphs (MAPPING) application as a possible tool to facilitate RC and shared decision-making (SDM). In part A, we audio-recorded 29 conversations between gynaecological oncologists and patients when discussing treatment options. In part B, interviews were performed with eight gynaecological oncologists.RC and SDM were measured using two observer-based measures, that is, the RC content (RCC) tool (scale 0-2) and the OPTION-5 instrument (scale 0-100). We used CollaboRATE questionnaire (scale 0-10) and a self-developed survey to assess patient-reported RC and SDM. In part B, we evaluated physicians' attitudes regarding the use of the MAPPING application to support RC. Patients were minimally involved in the decision-making process (OPTION-5 25.9%±13.4 RCC 0.21±0.18). Patient-reported SDM was high (mean collaboRATE score 9.19±1.79) and patients preferred receiving numeric information, whereas most physicians used qualitative risk terms rather than exact numbers. In part B, gynaecologists had a positive attitude towards the MAPPING application. However, they stated that the app was difficult to use improvement of layout and better implementations are needed., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background & Need for Innovation: Patients can be actively involved in various aspects of health professions education (HPE). However, learners in HPE graduate programs have minimal opportunities to learn how to involve patients in HPE., Steps Taken for Development and Implementation of Innovation: We designed, implemented, and evaluated a 12-week asynchronous, online graduate course that provides learners such opportunities. We established an advisory committee of patients, clinician-educators, and professors to guide course development. Using Thomas et al.'s framework, we established the general and targeted need for the course, identified the learning outcomes, determined the learning activities, and implemented and evaluated the course. It is offered within the asynchronous, online Diploma and Master in HPE at the University of Ottawa, Canada., Evaluation of Innovation: Forty learners participated in the course between 2020 and 2022. Using a survey with closed- and open-ended items, learners reported satisfaction with all course components, and they valued the patient narrative videos created for the course. After course completion, learners reported that the course is relevant to their professional practice. They also reported confidence in their abilities to actively involve patients in HPE. Based on the culminating assignment assessment data, learners attained course expectations., Critical Reflection: Although patients who participated in the narrative videos represented diverse age ranges, health conditions, and experiences in HPE, they were often Caucasian, educated, and from a higher socio-economic background. Also, the level of engagement between patients and learners in the course was limited. We are committed to improving our own patient involvement efforts., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2024 The Author(s).)

Introduction: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment., Materials and Methods: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework., Results: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented., Conclusion: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design., Patient or Public Contribution: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: Family engagement in care is increasingly recognized as an essential component of optimal critical care delivery. However, family engagement strategies have traditionally involved in-person family participation. Virtual approaches to family engagement may overcome barriers to family participation in care. The objective of this study was to perform a scoping review of virtual family engagement strategies in the intensive care unit (ICU). Methods: Studies were included if they involved a virtual engagement strategy with family members of an ICU patient and reported either (1) outcomes, (2) user perspectives, and/or (3) barriers or facilitators to virtual engagement in the ICU. Study types included primary research studies and review articles. Study selection followed the Joanna Briggs Institute Methodology for Scoping Reviews guidelines without any cultural, ethnic, gender, or specific language restrictions. The source of evidence included Ovid MEDLINE, PubMed, CINAHL, and Cochrane Library databases from inception to November 17, 2023. Google scholar was searched on December 1, 2023. Data were extracted on virtual engagement strategy used, outcomes (patient-centered, family-centered, and clinical), perspectives (patient, family, and health care professional [HCP]), and reported barriers or facilitators to virtual engagement in the ICU. Results were categorized into adult or pediatric/neonatal ICU setting. Results: Virtual engagement strategies identified were virtual visitation, virtual rounding, and virtual meetings. Family and HCPs were generally supportive of virtual visitation and rounding strategies. Overall, virtual strategies were associated with improved patient, family, and HCP outcomes. There were a few randomized interventional studies evaluating the effectiveness of virtual engagement strategies. Family, HCP, technological, and institutional barriers to the implementation and conduct of virtual engagement strategies were reported. Conclusions: Virtual family engagement strategies are associated with improved outcomes for patients, family, and HCPs. Identified barriers to virtual family engagement should be addressed. Future studies are needed to evaluate the effectiveness of virtual family engagement strategies in a more rigorous manner.

Objectives: This paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement., Methods: Before the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session., Results: The plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes., Conclusions: This paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research., Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Catherine Hofstetter receives support for attending meetings and/or travel from OMERACT for bi-annual conference. Peter Tugwell receives consulting fees from Reformulary Group for providing independent medical consultation professional services to the firms listed in this section. Participation on a Data Safety Monitoring Board or Advisory Board for UCB Biopharma GmbH & SPRL Parexel International Prahealth Sciences. Is an independent Committee Member for clinical trial Data Safety Monitoring Boards for FDA approved trials being conducted by: UCB Biopharma GmbH & SPRL Parexel International Prahealth Sciences Other financial or non-financial interests with Abbvie, Astra Zenaca, Aurinia, BMS, Centrexion, GSK, Horizon Pharma Inc, Janssen, Novartis, Pfizer & Sparrow. He is [unpaid] Chair of the Management Group of a registered non-profit independent medical research organization, OMERACT, whose goal is to improve and advance the health outcomes for patients suffering from musculoskeletal conditions. OMERACT receives arms-length funding from 11 companies. Dorcas Beaton had a leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid as a member of Management team at OMERACT, co- chair of methods group and technical advisory group of OMERACT. All other authors have no conflicts to declare., (Copyright © 2024. Published by Elsevier Inc.)

In this pilot study, the authors investigated the preliminary effectiveness of the digital lifestyle intervention, actensio (mementor DE GmbH), in treating arterial hypertension. Adults with arterial hypertension were randomly assigned to an intervention group (actensio + standard care) or a control group (waiting list + standard care) in a 1:1 ratio. Primary and secondary endpoints were assessed at baseline (t0) and 3 months post-randomization (t1). The primary endpoint was average systolic blood pressure, measured at home for 1 week. Secondary endpoints included patient engagement (measured using the "patient activation measure"; PAM-13), average diastolic blood pressure, and heart rate. All endpoints were analyzed using ANCOVA models, following an intention-to-treat approach, while adjusting for baseline values. Missing data were estimated using multiple imputation models. A total of N = 102 participants (f = 59, age = 52.94 ± 9.01) were randomized to either the intervention (IG; N = 52) or the control group (CG; N = 50), of which N = 80 completed the blood pressure diary, and N = 81 the PAM-13 at t1. Between-group comparisons showed an average group difference in systolic blood pressure of -5.06 mm Hg (95% CI = -8.71 to -1.41, p = .013) between the intervention group (M = 137.37 ± 10.13) and the control group (M = 142.35 ± 11.23). Average group difference for patient engagement was 3.35 points with a trend towards statistical significance (95% CI = -018 to 6.89, p = .064), favoring the intervention group (M IG  = 79.38 ± 9.44 vs. M CG  = 75.45 ± 10.62). There were no group differences in diastolic blood pressure (-1.78 mm Hg; 95% CI = -4.50 to 0.95, p = .402) and heart rate (-0.684; 95% CI = -3.73 to 2.36, p = 0.683). The results of the present pilot study confirm the preliminary effectiveness of the digital lifestyle intervention, actensio, in reducing high blood pressure in patients with hypertension., (© 2024 The Authors. The Journal of Clinical Hypertension published by Wiley Periodicals LLC.)

For many years, attempts have been made to incorporate service users into psychiatric nursing education, particularly in European countries and Australia. In Asian countries, however, concrete examples of this are notably scarce, and the limited instances of implementation lack the necessary systematic organisation and long-term sustainability. This study systematically planned and implemented a psychiatric nursing curriculum that integrated service users in Korea. It explored the experiences of 14 nursing students and four service users (who participated as instructors) who participated in these classes. Content analysis was performed on the results of focus group interviews with the participants. Owing to the participation of service users in the programme, students focused more on the patients as human beings, with the contexts of their individual lives, rather than on their diseases. The process facilitated a deeper grasp of person-centred psychiatric nursing and heightened student engagement in the learning process. The service users' experiences as instructors breathed new meaning into their psychiatric distress as an opportunity for new possibilities and helped them view themselves in a positive light, as members of society with self-esteem. They made great efforts to perform well in their role as instructors. These findings provide substantial evidence to support the expanded and sustained implementation of service user participation in future psychiatric nursing education. Establishing a national consortium to foster and support service user instructors could greatly improve psychiatric nursing education and related outcomes., (© 2024 John Wiley & Sons Australia, Ltd.)