BACKGROUND: Type 2 diabetes is a chronic disease with a significant medical burden. eHealth care integrates medicine and technology to enhance the outcomes of such patients; however, adequate eHealth literacy (eHL) is necessary for that to happen. Fostering eHL is crucial for patients with diabetes to engage with eHealth care and receive quality care and timely support. Experiential learning theory can enhance patients\' eHL and skills to use eHealth care technology in their daily care.
OBJECTIVE: This study explored the effectiveness of an eHealth care experiential learning program in improving eHL, patient health engagement, and eHealth care use status among patients with type 2 diabetes in 3 months.
METHODS: In this randomized controlled trial, patients under case management services from various clinics in Taiwan were randomly assigned to either the intervention group receiving the 6-session eHealth care experiential learning program or the control group receiving the usual care. Data were collected using structured questionnaires at 3 time points: pretest, postintervention, and 3 months after the intervention. Descriptive data were presented using frequency distribution, percentage, mean, and SD. The outcomes were analyzed using a generalized estimating equation method by intention-to-treat analysis.
RESULTS: A total of 92 participants (46 in each group) were recruited in this study. Of these, 86 completed the course and follow-up evaluations with a mean age of 62.38 (SD 12.91) years. After completing the intervention, the intervention group had significantly higher posttest scores in eHL (β=19.94, SE 3.52; P<.001), patient health engagement (β=.28, SE 0.13; P=.04), and eHealth use (β=3.96, SE 0.42; P<.001) than the control group. Furthermore, the intervention group maintained these significant improvements in eHL (β=18.19, SE 3.82; P<.001) and eHealth use (β=3.87, SE 0.49; P<.001) after 3 months.
CONCLUSIONS: Participating in the eHealth care experiential learning program resulted in significant improvements in eHL, patient health engagement, and eHealth use among patients with type 2 diabetes. Our interventional program can inform future clinical practice and policies to strengthen self-management skills and facilitate the use of health technology in caring for patients with chronic diseases.
BACKGROUND: ClinicalTrials.gov NCT05180604; https://clinicaltrials.gov/ct2/show/NCT05180604.

BACKGROUND: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.
OBJECTIVE: This review aims to synthesize the evidence on public involvement and engagement in big data research.
METHODS: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.
RESULTS: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.
CONCLUSIONS: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.
UNASSIGNED: RR2-https://doi.org/10.1136/bmjopen-2021-050167.

BACKGROUND: Many patients offered case management services to address their health and social needs choose not to engage. Factors that drive engagement remain unclear. We sought to understand patient characteristics associated with engagement in a social needs case management program and variability by case manager.
METHODS: Between August 2017 and February 2021, 43,347 Medicaid beneficiaries with an elevated risk of hospital or emergency department use were offered case management in Contra Costa County, California. Results were analyzed in 2022 using descriptive statistics and multilevel logistic regression models to examine 1) associations between patient engagement and patient characteristics and 2) variation in engagement attributable to case managers. Engagement was defined as responding to case manager outreach and documentation of at least 1 topic to mutually address. A sensitivity analysis was performed by stratifying the pre-COVID-19 and COVID-19 cohorts.
RESULTS: A total of 16,811 (39%) of eligible patients engaged. Adjusted analyses indicate associations between higher patient engagement and female gender, age 40 and over, Black/African American race, Hispanic/Latino ethnicity, history of homelessness, and a medical history of certain chronic conditions and depressive disorder. The intraclass correlation coefficient indicates that 6% of the variation in engagement was explained at the case manager level.
CONCLUSIONS: Medicaid patients with a history of housing instability and specific medical conditions were more likely to enroll in case management services, consistent with prior evidence that patients with greater need are more receptive to assistance. Case managers accounted for a small percentage of variation in patient engagement.

BACKGROUND: Direct access of patients to their web-based patient portal, including laboratory test results, has become increasingly common. Numeric laboratory results can be challenging to interpret for patients, which may lead to anxiety, confusion, and unnecessary doctor consultations. Laboratory results can be presented in different formats, but there is limited evidence regarding how these presentation formats impact patients\' processing of the information.
OBJECTIVE: This study aims to synthesize the evidence on effective formats for presenting numeric laboratory test results with a focus on outcomes related to patients\' information processing, including affective perception, perceived magnitude, cognitive perception, perception of communication, decision, action, and memory.
METHODS: The search was conducted in 3 databases (PubMed, Web of Science, and Embase) from inception until May 31, 2023. We included quantitative, qualitative, and mixed methods articles describing or comparing formats for presenting diagnostic laboratory test results to patients. Two reviewers independently extracted and synthesized the characteristics of the articles and presentation formats used. The quality of the included articles was assessed by 2 independent reviewers using the Mixed Methods Appraisal Tool.
RESULTS: A total of 18 studies were included, which were heterogeneous in terms of study design and primary outcomes used. The quality of the articles ranged from poor to excellent. Most studies (n=16, 89%) used mock test results. The most frequently used presentation formats were numerical values with reference ranges (n=12), horizontal line bars with colored blocks (n=12), or a combination of horizontal line bars with numerical values (n=8). All studies examined perception as an outcome, while action and memory were studied in 1 and 3 articles, respectively. In general, participants\' satisfaction and usability were the highest when test results were presented using horizontal line bars with colored blocks. Adding reference ranges or personalized information (eg, goal ranges) further increased participants\' perception. Additionally, horizontal line bars significantly decreased participants\' tendency to search for information or to contact their physician, compared with numerical values with reference ranges.
CONCLUSIONS: In this review, we synthesized available evidence on effective presentation formats for laboratory test results. The use of horizontal line bars with reference ranges or personalized goal ranges increased participants\' cognitive perception and perception of communication while decreasing participants\' tendency to contact their physicians. Action and memory were less frequently studied, so no conclusion could be drawn about a single preferred format regarding these outcomes. Therefore, the use of horizontal line bars with reference ranges or personalized goal ranges is recommended to enhance patients\' information processing of laboratory test results. Further research should focus on real-life settings and diverse presentation formats in combination with outcomes related to patients\' information processing.

BACKGROUND: Previous research and safety advocacy groups have proposed various behaviors for older adults to actively engage in medication safety. However, little is known about how older adults perceive the importance and reasonableness of these behaviors in ambulatory settings.
OBJECTIVE: This study aimed to assess older adults\' perceptions of the importance and reasonableness of 8 medication safety behaviors in ambulatory settings and compare their responses with those of younger adults.
METHODS: We conducted a survey of 1222 adults in the United States using crowdsourcing to evaluate patient behaviors that may enhance medication safety in community settings. A total of 8 safety behaviors were identified based on the literature, such as bringing medications to office visits, confirming medications at home, managing medication refills, using patient portals, organizing medications, checking medications, getting help, and knowing medications. Respondents were asked about their perception of the importance and reasonableness of these behaviors on a 5-point Likert rating scale in the context of collaboration with primary care providers. We assessed the relative ranking of behaviors in terms of importance and reasonableness and examined the association between these dimensions across age groups using statistical tests.
RESULTS: Of 1222 adult participants, 125 (10.2%) were aged 65 years or older. Most participants were White, college-educated, and had chronic conditions. Older adults rated all 8 behaviors significantly higher in both importance and reasonableness than did younger adults (P<.001 for combined behaviors). Confirming medications ranked highest in importance (mean score=3.78) for both age groups while knowing medications ranked highest in reasonableness (mean score=3.68). Using patient portals was ranked lowest in importance (mean score=3.53) and reasonableness (mean score=3.49). There was a significant correlation between the perceived importance and reasonableness of the identified behaviors, with coefficients ranging from 0.436 to 0.543 (all P<.001).
CONCLUSIONS: Older adults perceived the identified safety behaviors as more important and reasonable than younger adults. However, both age groups considered a behavior highly recommended by professionals as the least important and reasonable. Patient engagement strategies, common and specific to age groups, should be considered to improve medication safety in ambulatory settings.

BACKGROUND: Helsinki University Hospital has developed a digital care pathway (DCP) for people with multiple sclerosis (MS) to improve the care quality. DCP was designed for especially newly diagnosed patients to support adaptation to a chronic disease.
OBJECTIVE: This study investigated the MS DCP user behavior and its impact on patient education-mediated changes in health care use, patient-perceived impact of MS on psychological and physical functional health, and patient satisfaction.
METHODS: We collected data from the service launch in March 2020 until the end of 2022 (observation period). The number of users, user logins, and their timing and messages sent were collected. The association of the DCP on health care use was studied in a case-control setting in which patients were allowed to freely select whether they wanted to use the service (DCP group n=63) or not (control group n=112). The number of physical and remote appointments either to a doctor, nurse, or other services were considered in addition to emergency department visits and inpatient days. The follow-up time was 1 year (study period). Furthermore, a subgroup of 36 patients was recruited to fill out surveys on net promoter score (NPS) at 3, 6, and 12 months, and their physical and psychological functional health (Multiple Sclerosis Impact Scale) at 0, 3, 6, and 12 months.
RESULTS: During the observation period, a total of 225 patients had the option to use the service, out of whom 79.1% (178/225) logged into the service. On average, a user of the DCP sent 6.8 messages and logged on 7.4 times, with 72.29% (1182/1635) of logins taking place within 1 year of initiating the service. In case-control cohorts, no statistically significant differences between the groups were found for physical doctors\' appointments, remote doctors\' contacts, physical nurse appointments, remote nurse contacts, emergency department visits, or inpatient days. However, the MS DCP was associated with a 2.05 (SD 0.48) visit increase in other services, within 1 year from diagnosis. In the prospective DCP-cohort, no clinically significant change was observed in the physical functional health between the 0 and 12-month marks, but psychological functional health was improved between 3 and 6 months. Patient satisfaction improved from the NPS index of 21 (favorable) at the 3-month mark to the NPS index of 63 (excellent) at the 12-month mark.
CONCLUSIONS: The MS DCP has been used by a majority of the people with MS as a complementary service to regular operations, and we find high satisfaction with the service. Psychological health was enhanced during the use of MS DCP. Our results indicate that DCPs hold great promise for managing chronic conditions such as MS. Future studies should explore the potential of DCPs in different health care settings and patient subgroups.

BACKGROUND: Telemedicine in the realm of rehabilitation includes the remote delivery of rehabilitation services using communication technologies (eg, telephone, emails, and video). The widespread application of virtual care grants a suitable time to explore the intersection of compassion and telemedicine, especially due to the impact of COVID-19 and how it greatly influenced the delivery of health care universally.
OBJECTIVE: The purpose of this study was to explore how compassionate care is understood and experienced by physiatrists and patients engaged in telemedicine.
METHODS: We used a qualitative descriptive approach to conduct interviews with patients and physiatrists between June 2021 and March 2022. Patients were recruited across Canada from social media and from a single hospital network in Toronto, Ontario. Physiatrists were recruited across Canada through social media and the Canadian Association for Physical Medicine and Rehabilitation (CAPM&R) email listserve. Interviews were recorded and transcribed. Data were analyzed thematically.
RESULTS: A total of 19 participants were interviewed-8 physiatrists and 11 patients. Two themes capturing physiatrists\' and patients\' experiences with delivering and receiving compassionate care, especially in the context of virtual care were identified: (1) compassionate care is inherently rooted in health care providers\' inner intentions and are, therefore, expressed as caring behaviors and (2) virtual elements impact the delivery and receipt of compassionate care.
CONCLUSIONS: Compassionate care stemmed from physiatrists\' caring attitudes which then manifest as caring behaviors. In turn, these caring attitudes and behaviors enable individualized care and the establishment of a safe space for patients. Moreover, the virtual care modality both positively and negatively influenced how compassion is enacted by physiatrists and received by patients. Notably, there was large ambiguity around the norms and etiquette surrounding virtual care. Nonetheless, the flexibility and person-centeredness of virtual care cause it to be useful in health care settings.

BACKGROUND: There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one-time honorarium, salary) and amount. Further, broad-based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation.
METHODS: This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self-identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open-text comments in addition to menu-based and scaled response options. Basic frequencies were performed for all questions and open-text comments were analyzed through inductive qualitative content analysis.
RESULTS: A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open-text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships.
CONCLUSIONS: Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners\' unique contexts.
UNASSIGNED: Two patient partners are members of the CPPS research team and have been fully engaged in all study phases from project conception to knowledge translation. They are co-authors of this manuscript. The survey was co-designed and pilot tested with patient partners and survey participants were patient partners.

BACKGROUND: Social robots are promising tools to improve the quality of life of children and youth living with anxiety and should be developed based on the priorities of end users. However, pathways to include young people in patient-oriented research, particularly in the overlap between technology and mental health, have been historically limited.
OBJECTIVE: In this work, we describe engagement with experts with lived experiences of paediatric anxiety in a social robotics research programme. We report the experiences of patient advisors in a co-creation process and identify considerations for other research groups looking to involve end users in technology development in the field of youth mental health.
METHODS: We engaged individuals with a lived experience of paediatric anxiety (current, recent past, or from a parent perspective) using three different models over the course of three years. Two initial patient partners were involved during project development, eight were engaged as part of an advisory panel (\'the League\') during study development and data analysis and four contributed as ongoing collaborators in an advisory role. League members completed a preparticipation expectation survey and a postparticipation experience survey.
RESULTS: Eight individuals from a range of anxiety-related diagnostic groups participated in the League as patient partners. Members were teenagers (n = 3), young adults aged 22-26 years who had connected with a youth mental health service as children within the past eight years (n = 3) or parents of children presently living with anxiety (n = 2). Preferred methods of communication, expectations and reasons for participating were collected. The League provided specific and actionable feedback on the design of workshops on the topic of social robotics, which was implemented. They reported that their experiences were positive and fairly compensated, but communication and sustained engagement over time were challenges. Issues of ethics and language related to patient-centred brain health technology research are discussed.
CONCLUSIONS: There is an ethical imperative to meaningfully incorporate the voices of youth and young adults with psychiatric conditions in the development of devices intended to support their mental health and quality of life.
UNASSIGNED: Six young people and two parents with lived experiences of paediatric anxiety participated in all stages of developing a research programme on social robotics to support paediatric mental health in a community context. They also provided input during the preparation of this manuscript.

BACKGROUND: Creating safer care is a high priority across healthcare systems. Despite this, most systems tend to focus on mitigating past harm, not creating proactive solutions. Managers and staff identify safety threats often with little input from patients and their caregivers during their health encounters.
METHODS: This is a qualitative descriptive study utilizing focus groups and one-to-one interviews with patients and caregivers who were currently using (or had previously used) services in health systems across Canada. Data were analysed via inductive thematic analysis to understand existing and desired strategies to promote safer and better quality care from the perspectives of patients and caregivers.
RESULTS: In our analysis, we identified three key themes (safety strategies) from patients\' and caregivers\' perspectives and experiences: Using Tools and Approaches for Engaging Patients and Caregivers in their Care; Having Accountability Processes and Mechanisms for Safe Care; and Enabling Patients and Caregivers Access to Information.
CONCLUSIONS: Safety is more than the absence of harm. Our findings outline a number of suggestions from patients and caregivers on how to make care safer, ranging from being valued on teams, participating as members of quality improvement tables, having access to health information, having access to an advocate to help make sense of information and having processes in place for disclosure and closure. Future work can further refine, implement and evaluate these strategies in practice.
UNASSIGNED: An advisory group guided the research and was co-chaired by a patient partner. Members of the advisory group spanned patient and caregiver organizations and health sectors across Canada and included three patient partners and leaders who work closely with patients and caregivers in their day-to-day work. In the research itself, we engaged 28 patients and caregivers from across Canada to learn about their safety experiences and learn what safer care looks like from their perspectives.