Patient Engagement in a Mobile App-Based Rehabilitation Program for Total Hip or Knee Arthroplasty: Secondary Data Analysis of a Randomized Controlled Trial.

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; χ21=11.1, P=.001) and the number of days they completed rehabilitation tasks (B=2.65, 95% CI 0.45-5.48; χ21=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.

Research Participation and Feedback: Perception of Adolescents and Young Adults Living with HIV in Lagos, Nigeria.

BACKGROUND: Evidence-based research remains the cornerstone in changing the narrative of wholesome health among Adolescents and Young Adults Living with HIV (AYALHIV). However, little is known about the perceptions of AYALHIV in research participation and outcomes, in low- and middle-income countries, especially in sub-Saharan Africa. This study describes the perception of AYALHIV in research participation and outcome in Lagos, Nigeria. METHODS: The study population was drawn from a cohort of participants in a cross-sectional study at the Nigerian Institute of Medical Research. The survey questions were on perceptions of the importance of research participation, the frequency, understanding of participation in research, the interest in the outcome, the knowledge of the interpretation of the outcome and the willingness to participate in future studies. Data obtained was analyzed using SPSS version 26.0. RESULTS: The mean age of the AYALHIV was 15.7(±3.1) years, with a male-to-female ratio of (0.8:1), and 85.7% on antiretroviral drugs for at least five years. Seventy-two percent (46/63) have been involved in previous studies at least once, with only 27% (17/63) informed on the outcome of the research they have ever participated. Only 30% (19) of participants understood they were involved in research, with 92% interested in the study outcome. 87.3% (55) will request more information before participating in future research activities. CONCLUSION: Educating AYALHIV on research participation is important in promoting concerted efforts by researchers towards improving engagement, patient-centred care, and research dissemination.

CONTEXTE: La recherche fondée sur des données probantes reste la pierre angulaire du changement du discours sur la santé saine chez les adolescents et les jeunes adultes vivant avec le VIH (AYALHIV). Cependant, on sait peu de choses sur les perceptions de l'AYALHIV dans la participation et les résultats de la recherche, dans les pays à revenu faible et intermédiaire, en particulier en Afrique subsaharienne. Cette étude décrit la perception d'AYALHIV dans la participation et les résultats de la recherche à Lagos, au Nigéria. METHODES: La population m'étudiée a été tirée d'une cohorte de participants à une étude transversale menée à l'Institut nigérian de recherche médicale. Les questions de l'enquête portaient sur les perceptions de l'importance de la participation à la recherche, la fréquence, la compréhension de la participation à la recherche, l'intérêt pour les résultats, la connaissance de l'interprétation des résultats et la volonté de participer à des études futures. Les données obtenues ont été analysées à l'aide de SPSS version 26.0. RESULTATS: L'âge moyen des AYALHIV était de 15,7 (± 3,1) ans, avec un ratio hommes/femmes de (0,8 : 1) et 85,7 % prenaient des médicaments antirétroviraux depuis au moins cinq ans. Soixantedouze pour cent (46/63) ont participé à des études antérieures au moins une fois, et seulement 27 % (17/63) sont informés des résultats de la recherche à laquelle ils ont déjà participé. Seulement 30 % (19) des participants comprenaient qu'ils étaient impliqués dans la recherche, et 92 % d'entre eux étaient intéressés par les résultats de l'étude. 87,3 % (55) demanderont plus d'informations avant de participer à de futures activités de recherche. CONCLUSION: Éduquer AYALHIV sur la participation à la recherche est important pour promouvoir les efforts concertés des chercheurs en vue d'améliorer l'engagement, les soins centrés sur le patient et la diffusion de la recherche. MOTS CLES: VIH, Adolescent, Jeunes adultes, Perception, Recherche.

[PartnerREC network: Result from a process of coconstruction with patient partners and researchers]. / Réseau PartnerREC.

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.

Le réseau PartnerREC des Hôpitaux universitaires de Genève a vu le jour afin de faciliter la collaboration entre les chercheur-ses et les patient-es partenaires dans tous les types de projets en recherche clinique, principalement ceux menés aux HUG. Il est le fruit d'une démarche de coconstruction débutée en 2019 par un groupe de médecins, chercheur-ses, membres de la Commission cantonale d'éthique de la recherche, une avocate et des patientes partenaires. Le réseau a mis en place 4 actions : a) la création d'un site internet destiné aux chercheur-ses et aux patient-es participant à des projets de recherche ; b) des conseils personnalisés pour accompagner les chercheur-ses dans leur démarche de partenariat ; c) une formation au partenariat en recherche, en collaboration avec des acteur-rices du partenariat en suisse romande et d) le développement de projets de recherche propres sur le partenariat patient-e en recherche.

A Joanna Briggs Institute Framework Approach to Shared Decision Making in End-of-Life.

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.

Retention in HIV Primary Care Using a Web-Based Patient Engagement Platform: Multistate Case-Control Study.

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.

Involvement in medication safety behaviors among older people with chronic diseases: systematic review of intervention studies.

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.

Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research.

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.

Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies.

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.

Chronically ill patients' perspectives on support services and activities of patient organizations.

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.

A roadmap for empowering cardiovascular disease patients: a 5P-Medicine approach and technological integration.

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.

Predicting Long-Term Engagement in mHealth Apps: Comparative Study of Engagement Indices.

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 R2 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 R2 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.

A shared decision-making intervention for individuals living with chronic obstructive pulmonary disease who are considering the menu of pulmonary rehabilitation treatment options; a feasibility study.

OBJECTIVES: Shared Decision Making (SDM) has potential to support Pulmonary Rehabilitation (PR) decision-making when patients are offered a menu of centre- and home-based options. This study sought to evaluate the feasibility and acceptability of a three-component PR SDM intervention for individuals with Chronic Obstructive Pulmonary Disease (COPD) and PR healthcare professionals. METHODS: Participants were recruited from Dec 2021-Sep 2022. Healthcare professionals attended decision coaching training and used the consultation prompt during consultations. Individuals received the Patient Decision Aid (PtDA) at PR referral. Outcomes included recruitment capability, data completeness, intervention fidelity, and acceptability. Questionnaires assessed patient activation and decisional conflict pre and post-PR. Consultations were assessed using Observer OPTION-5. Optional interviews/focus groups were conducted. RESULTS: 13% of individuals [n = 31, 32% female, mean (SD) age 71.19 (7.50), median (IQR) MRC dyspnoea 3.50 (1.75)] and 100 % of healthcare professionals (n = 9, 78% female) were recruited. 28 (90.32%) of individuals completed all questionnaires. SDM was present in all consultations [standardised scores were mean (SD) = 36.97 (21.40)]. Six healthcare professionals and five individuals were interviewed. All felt consultations using the PtDA minimised healthcare professionals' bias of centre-based PR, increased individuals' self-awareness of their health, prompted consideration of how to improve it, and increased involvement in decision-making. DISCUSSION: Results indicate the study processes and SDM intervention is feasible and acceptable and can be delivered with fidelity when integrated into the PR pathway.

Digital health as a tool for patient activation and improving quality of care for heart failure.

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.

A shared journey: evaluating a patient-assessed measure of self-management of chronic conditions in an Australian setting.

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.

Systematic review of barriers, facilitators, and tools to promote shared decision making in the emergency department.

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.

Exploring the MAPPING application to facilitate risk communication and shared decision-making between physicians and patients with gynaecological cancer.

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.

An Innovative Course on Involving Patients in Health Professions Education.

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.