Engaging patients and family members in the evaluation of a mental health patient portal: protocol for a mixed-methods study

Abstract

IntroductionTwenty per cent of Canadians will experience a mental illness in any year. Mental health patient portals have been developed to support these individuals in taking more control over their own mental health and care. This may be done through electronic access to their health records and other supportive functions like completion of online self-assessments. To date, there has been limited research into the value that these portals may provide within mental health contexts. This study will identify what value mental health patient portals may offer to patients and their family members.Methods and analysisThis study will use a mixed-methods design. Patients will complete a survey consisting of validated instruments at the time of enrolment in the portal, and at 3 and 6 months of portal use. Patient and family member focus groups will be conducted. Portal usage data will be collected to identify if there are differences in outcomes based on usage. The study will be done at Canada’s largest mental health and addiction teaching hospital, and will be conducted using a patient and family-oriented research approach, engaging these important representatives in all stages of the research process. The primary data analysis for the survey portion of the study will be done using linear mixed-effect models, assessing the differences between patients with different portal usage levels. A thematic analysis will be conducted of the focus group transcripts.Ethics and disseminationApproval from the study site’s Research Ethics Board has been obtained. The dissemination of findings of this study will be done through presentations at conferences, as well as a formal peer-reviewed journal article. Additionally, the research team will work with a group of patients and family members to identify opportunities to complete knowledge translation and dissemination activities in non-traditional venues.

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

“…43 In another ongoing initiative, researchers are involving patients and their family members in the design and execution of a mixed methods study that will evaluate the value of behavioral health patient portals. 44 Using portal usage data, a literature review, patient/family focus groups, a daylong symposium, and outcomes data, researchers and their patient counterparts are cocreating a resource describing best practices for patient-researcher partnerships applicable to technologybased research initiatives in a broad range of clinical areas. 45 Such collaborations will improve the potential for developing patient-and clinician-friendly tools that support Learning Health System goals to align research and clinical care in an informatics-based ecosystem to drive a cycle of continuous advancement.…”

Shifting Mindsets: The Impact of a Patient Portal on Functioning and Recovery in a Mental Health Setting

“…Further details can be found in the protocol paper published in BMJ Open . 29 This work is informed by the Canadian Institute of Health Research Strategy for Patient-Oriented Research Framework, 30 which outlines key principles for engaging patients to improve care delivery through research. The study was approved by the Research Ethics Board at the Centre for Addiction and Mental Health (REB 044/2018) and the University of Toronto (REB No.…”

“…Based on the sample size calculation outlined in the protocol, about 100 patients (accounting for ∼30% attrition) were required for the study. 29 A sample size of N = 68 completers achieved 80% power (alpha = 5%) for detecting a 30% drop in World Health Organization Disability Assessment Scale 2.0 (WHODAS 2.0) from baseline to T2 (equivalent to a small to medium effect size of Cohen's d = 0.27). All participants provided informed consent in written form as outlined in the REDCap eConsent recommendations.…”

“…34,[36][37][38] Details about the domains and reliability of these instruments can be found in the protocol. 29 In addition to collecting survey data for the quantitative strand, usage data [39][40][41] on the mental health patient portal were collected from the back-end platform throughout the 6 months of the study. This includes the duration, frequency and usage of the different functionalities of the portal.…”

Approaches for Departments, Schools, and Health Systems to Better Implement Technologies Used for Clinical Care and Education

“…Technology-associated change impacts many areas of clinical care, training, and faculty development [14,23]. Areas being explored include the computer-based patient record or electronic health record (EHR) (e.g., workflow time and burnout) [24], adjustments of educational Milestones [25], technology-assisted clinical handoffs [13], social media use [16], electronic health portals [26], artificial intelligence for diagnosis [27], registries for clinical care and research [20], ediaries for longitudinal collection of patient symptoms [28], and use of email, apps, and games [20,29,30].…”