Measuring the Impact of MyLupusGuide in Canada: Results of a Randomized Controlled Study.

OBJECTIVE: This study was undertaken to assess the effects of a web-based program, MyLupusGuide, developed to facilitate self-management in systemic lupus erythematosus (SLE). METHODS: In this randomized controlled online study, participants received either immediate access to the MyLupusGuide site or delayed access starting on month 3. The primary outcome was the patient activation measure (PAM) score. Secondary outcomes included measurements of health status, self-efficacy, coping, perceived patient-physician relationship, and medication adherence. Outcomes were measured at the baseline visit and at the 3-month and 6-month follow-up visits. We used linear mixed modeling to compare PAM scores between the 2 groups at months 3 and 6. RESULTS: There were 541 participants included in this study. The mean ± SE age was 50 ± 14 years; 93% were female and 74% were White. The mean ± SE disease duration was 17 ± 12 years, and 56% visited MyLupusGuide at least once. The baseline mean ± SE PAM score was 61.2 ± 13, with 36% scoring low for perceived self-management skills. After 3 months of exposure to MyLupusGuide, there were no differences in terms of PAM scores between groups. In exploratory analyses, we found significant improvement in PAM scores in those who had low PAM scores at baseline and in male individuals. We observed significant improvements in self-efficacy before and after access to MyLupusGuide and delayed improvements at month 6 compared to month 3 in terms of mental health and emotional coping. CONCLUSION: MyLupusGuide increases self-efficacy but not patient activation. A total of 56% of participants visited the MyLupusGuide site during the study period. Individuals with lupus need support to become activated toward self-management behaviors.

Challenges of Perceived Self-Management in Lupus.

OBJECTIVE: Systemic lupus erythematosus is a chronic autoimmune disease with varied and unpredictable levels of disease activity. The ability to self-manage lupus is important in controlling disease activity. Our objective was to determine levels of patient activation toward self-management in lupus. METHODS: We used baseline results from the MyLupusGuide study, which had recruited 541 lupus patients from 10 lupus centers. We used the Patient Activation Measure (PAM), a validated self-reported tool designed to measure activation toward self-management ability, as our primary variable and examined its association with demographic, disease-related, patient-provider communication and psychosocial variables captured in our study protocol. Univariable and multivariable linear regressions were performed using linear mixed models, with a random effect for centers. RESULTS: The mean ± SD age of participants was 50 ± 14 years, 93% were female, 74% were White, and the mean ± SD disease duration was 17 ± 12 years. The mean ± SD PAM score was 61.2 ± 13.5, with 36% of participants scoring in the 2 lower levels, indicating low activation. Variables associated with low activation included being single, having lower physical health status, lower self-reported disease activity, lower self-efficacy, use of more emotional coping and fewer distraction and instrumental coping strategies, and a perceived lack of clarity in patient-doctor communication. CONCLUSION: Low patient activation was observed in more than one-third of lupus patients, indicating that a large proportion of patients perceived that they are lacking in lupus self-management skills. These results highlight a modifiable gap in perceived self-management ability among patients with lupus.

Exploring Mentorship as a Strategy to Build Capacity and Optimize the Embedded Scientist Workforce.

BACKGROUND: Mentorship plays a significant role in career development in academic and applied settings, but little is documented about its role in the experiential learning of academic trainees embedded in health system organizations. The experiences of the first cohort of Canada's Health System Impact (HSI) Fellowship program can provide insights into how mentorship in this innovative type of training can work. OBJECTIVES: To understand the mentorship strategies that were used and to explore fellows' and supervisors' perspectives and experiences on the effectiveness and value of those strategies. METHODS: Data from the surveys of fellows and their supervisors and a panel rooted in the lived experience of the first HSI Fellowship cohort were used. RESULTS: Health system and academic supervisors developed a range of innovative, individualized and effective approaches for guiding their fellows, such as providing the fellow with a committee of mentors within the organization, holding regular meetings with the fellow and both the health system and the academic supervisor and leveraging their own network to expand the network and resources available to the fellow. CONCLUSION: The results suggest that engaging senior leadership in health system settings has provided positive experiences for both fellows and their mentors.

Overall Quality Performance of Long-Term Care Homes in Ontario.

In this paper, individually reported long-term care (LTC) quality indicators have been supplemented with the composite Qindex measure and applied to 614 homes in Ontario, Canada. This study (1) describes the overall quality performance of LTC homes across five years (2012-2017) and (2) determines if organizational factors impact quality performance. The results demonstrate significant, continuous sector-wide improvement in overall quality performance (as assessed by the Qindex) over time and significant differences in quality based on home size, operator size and ownership. This paper positions the Qindex, a global metric of quality, as a valuable tool for quality measurement and management in the LTC sector.

Relationships between work outcomes, work attitudes and work environments of health support workers in Ontario long-term care and home and community care settings.

BACKGROUND: Our overarching study objective is to further our understanding of the work psychology of Health Support Workers (HSWs) in long-term care and home and community care settings in Ontario, Canada. Specifically, we seek novel insights about the relationships among aspects of these workers' work environments, their work attitudes, and work outcomes in the interests of informing the development of human resource programs to enhance elder care. METHODS: We conducted a path analysis of data collected via a survey administered to a convenience sample of Ontario HSWs engaged in the delivery of elder care over July-August 2015. RESULTS: HSWs' work outcomes, including intent to stay, organizational citizenship behaviors, and performance, are directly and significantly related to their work attitudes, including job satisfaction, work engagement, and affective organizational commitment. These in turn are related to how HSWs perceive their work environments including their quality of work life (QWL), their perceptions of supervisor support, and their perceptions of workplace safety. CONCLUSIONS: HSWs' work environments are within the power of managers to modify. Our analysis suggests that QWL, perceptions of supervisor support, and perceptions of workplace safety present particularly promising means by which to influence HSWs' work attitudes and work outcomes. Furthermore, even modest changes to some aspects of the work environment stand to precipitate a cascade of positive effects on work outcomes through work attitudes.

Using the Nine Common Themes of Good Practice checklist as a tool for evaluating the research priority setting process of a provincial research and program evaluation program.

BACKGROUND: Given the context-specific nature of health research prioritization and the obligation to effectively allocate resources to initiatives that will achieve the greatest impact, evaluation of priority setting processes can refine and strengthen such exercises and their outcomes. However, guidance is needed on evaluation tools that can be applied to research priority setting. This paper describes the adaption and application of a conceptual framework to evaluate a research priority setting exercise operating within the public health sector in Ontario, Canada. METHODS: The Nine Common Themes of Good Practice checklist, described by Viergever et al. (Health Res Policy Syst 8:36, 2010) was used as the conceptual framework to evaluate the research priority setting process developed for the Locally Driven Collaborative Projects (LDCP) program in Ontario, Canada. Multiple data sources were used to inform the evaluation, including a review of selected priority setting approaches, surveys with priority setting participants, document review, and consultation with the program advisory committee. RESULTS: The evaluation assisted in identifying improvements to six elements of the LDCP priority setting process. The modifications were aimed at improving inclusiveness, information gathering practices, planning for project implementation, and evaluation. In addition, the findings identified that the timing of priority setting activities and level of control over the process were key factors that influenced the ability to effectively implement changes. CONCLUSIONS: The findings demonstrate the novel adaptation and application of the 'Nine Common Themes of Good Practice checklist' as a tool for evaluating a research priority setting exercise. The tool can guide the development of evaluation questions and enables the assessment of key constructs related to the design and delivery of a research priority setting process.

A risk screening tool for ethical appraisal of evidence-generating initiatives.

BACKGROUND: The boundaries between health-related research and practice have become blurred as initiatives traditionally considered to be practice (e.g., quality improvement, program evaluation) increasingly use the same methodology as research. Further, the application of different ethical requirements based on this distinction raises concerns because many initiatives commonly labelled as "non-research" are associated with risks to patients, participants, and other stakeholders, yet may not be subject to any ethical oversight. Accordingly, we sought to develop a tool to facilitate the systematic identification of risks to human participants and determination of risk level across a broad range of projects (e.g., clinical research, laboratory-based projects, population-based surveillance, and program evaluation) and health-related contexts. This paper describes the development of the Public Health Ontario (PHO) Risk Screening Tool. METHOD: Development of the PHO Risk Screening Tool included: (1) preparation of a draft risk tool (n = 47 items); (2) expert appraisal; (3) internal stakeholder validation; (4) external validation; (5) pilot testing and evalution of the draft tool; and (6) revision after 1 year of testing. RESULTS: A risk screening tool was generated consisting of 20 items organized into five risk domains: Sensitivity; Participant Selection, Recruitment and Consent; Data/Sample Collection; Identifiability and Privacy Risk; and Commercial Interests. The PHO Risk Screening Tool is an electronic tool, designed to identify potential project-associated risks to participants and communities and to determine what level of ethics review is required, if any. The tool features an easy to use checklist format that generates a risk score (0-3) associated with a suggested level of ethics review once all items have been completed. The final score is based on a threshold approach to ensure that the final score represents the highest level of risk identified in any of the domains of the tool. CONCLUSIONS: The PHO Risk Screening Tool offers a practical solution to the problem of how to maintain accountability and appropriate risk oversight that transcends the boundaries of research and practice. We hope that the PHO Risk Screening Tool will prove useful in minimizing the problems of over and under protection across a wide range of disciplines and jurisdictions.

Spanning boundaries into remote communities: an exploration of experiences with telehealth chronic disease self-management programs in rural northern ontario, Canada.

BACKGROUND: In rural and remote settings, providing education programs for chronic conditions can be challenging because of the limited access and availability of healthcare services. The purpose of this study was to explore the experiences of participants in a chronic disease self-management program via telehealth (tele-CDSMP) and to identify facilitators and barriers to inform future tele-CDSMP delivery models. MATERIALS AND METHODS: Nineteen tele-CDSMP courses were delivered to 13 Northern Ontario (Canada) communities. Two types of group were delivered: (1) single telehealth site (one community formed a self-management group linked to program leaders via telehealth) and (2) multiple telehealth sites (several remote communities were linked to each other and program leaders via telehealth). Following the completion of the courses, participants were invited to partake in a focus group. RESULTS: Overall, 44 people participated in the focus groups. Four main themes were identified by tele-CDSMP participants related to the overall experience of the program: (1) bridging the access gap, (2) importance of group dynamics, (3) importance of strong leaders, and (4) preference for extended session time. Key barriers were related to transportation, lack of session time, and access to Internet-based resources. The main facilitators were having strong program leaders, encouraging the development of group identity, and providing enough time to be comfortable with technology. CONCLUSIONS: Our findings suggest overall the tele-CDSMP was a positive experience for participants and that tele-CDSMPs are an effective option to increasing access to more geographically isolated communities.

Increasing access to chronic disease self-management programs in rural and remote communities using telehealth.

OBJECTIVE: This study examined whether a telehealth chronic disease self-management program (CDSMP) would lead to improvements in self-efficacy, health behaviors, and health status for chronically ill adults living in Northern Ontario, Canada. Two telehealth models were used: (1) single site, groups formed by participants at one telehealth site; and (2) multi-site, participants linked from multiple sites to form one telehealth group, as a strategy to increase access to the intervention for individuals living in rural and remote communities. SUBJECTS AND METHODS: Two hundred thirteen participants diagnosed with heart disease, stroke, lung disease, or arthritis attended the CDSMP at a preexisting Ontario Telemedicine Network studio from September 2007 to June 2008. The program includes six weekly, peer-facilitated sessions designed to help participants develop important self-management skills to improve their health and quality of life. Baseline and 4-month follow-up surveys were administered to assess self-efficacy beliefs, health behaviors, and health status information. Results were compared between single- and multi-site delivery models. RESULTS: Statistically significant improvements from baseline to 4-month follow-up were found for self-efficacy (6.6±1.8 to 7.0±1.8; p<0.001), exercise behavior, cognitive symptom management, communication with physicians, role function, psychological well-being, energy, health distress, and self-rated health. There were no statistically significant differences in outcomes between single- and multi-site groups. CONCLUSIONS: Improvements in self-efficacy, health status, and health behaviors were equally effective in single- and multi-site groups. Access to self-management programs could be greatly increased with telehealth using single- and multi-site groups in rural and remote communities.