BC Data ScoutTM: A New Tool To Investigate Datasets For Health Research

Introduction BC’s Ministry of Health (MOH) maintains many administrative databases with rich information and analytical potential. Researchers are keen to use these data for both discovery and applied research. Historically, limited views of data availability and populations therein have supported study feasibility. Therefore, we developed BC Data ScoutTM, a cohort browser. Objectives and Approach We developed a cohort browser service to provide information to researchers planning a study using MOH data. The objective was to create a tool that is simple to use, provides quick results and is free to users to encourage its use. A better understanding of the data available can improve study quality and expand the user-base by giving researchers access to information not previously available during the planning stages. The tool will be evaluated by examining the number of requests received and a user satisfaction survey. Plans are in place to expand into additional data sources and extend query sophistication. Results The BC Data ScoutTM online tool provides cohort information in the form of highly aggregated, approximate results to researchers planning a study. It was developed by the MOH, the BC SUPPORT Unit and Population Data BC (PopData) and was launched in February 2018. The service is delivered by PopData. BC Data ScoutTM offers province-wide information for query, is accessible to a wide group of eligible researchers, and has data availability from the year 2000 onwards. Four types of MOH data are available for query: hospital data; physician data; pharmaceutical data; and demographics. In addition to determining study feasibility, the aggregate reports also help to further refine a full data access request and provide enough information to complete and strengthen a funding application. Conclusion/Implications BC Data ScoutTM will be beneficial for researchers planning to request data. This preliminary information may increase the chances of meaningful research studies to obtain funding, and the production of relevant, high-quality research results. BC will be among the first jurisdictions across Canada to offer this type of feasibility service

Left Shifting of Language Related Activity Induced by Bihemispheric tDCS in Postacute Aphasia Following Stroke

Both anodal transcranial direct current stimulation (tDCS) of the left IFG and cathodal stimulation of the right IFG were shown to improve rehabilitation of stroke patients with Broca’s aphasia. The study aimed at assessing the impact of a bihemispheric IFG stimulation compared to sham on postacute non-fluent aphasia. Twelve patients with non-fluent aphasia were included at least 4 weeks following cerebral stroke. Ten daily sessions of 2 mA bihemispheric verum or sham tDCS (anode on left IFG and cathode on right IFG) were performed concomitantly with individual language therapy in a double-blinded randomized controlled study with parallel group design. Language functions [i.e., communication (ANELT), picture naming and the Aachen aphasia test (AAT)] were assessed up to 1 month following tDCS. The picture naming task significantly improved (increased number of nouns) at the end of the tDCS procedure in the verum but not sham group. Improvements in the picture naming task and the communication task of the AAT at 4 weeks after tDCS procedure were only seen in the verum group. In patients with postacute cerebral stroke, repeated sessions of tDCS applied on both IFG concomitantly with language therapy were able to induce immediate effects on picture naming presumably due to an early left shift of language-associated function that maintained for 4 weeks. Effects on clinically relevant communicative abilities are likely

Summary of Research: Collaboration Between Healthcare Professionals and People with Multiple Sclerosis to Develop Communication Tools to Improve the Standard of Multiple Sclerosis Care

: This is a summary of a previously published paper: Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care. It describes a collaboration between people with multiple sclerosis (PwMS) and healthcare professionals (HCPs) to identify challenges in multiple sclerosis (MS) care and design tools to improve communication during consultations

The BC SUPPORT Unit Data Platform: Offering Data-Related Services To Researchers In British Columbia

Introduction The Canadian Institutes of Health Research (CIHR) and provinces co-fund local Units to increase the quality and quantity of patient-oriented research. These SUPPORT (Support for People and Patient-Oriented Research and Trials) Units include a prominent Data Plan component. The BC Plan is the result of collaboration between many organizational partners. Objectives and Approach A Data Advisory Committee comprised of eight organizational partners worked together for several months in 2016-2017 to develop BC’s provincial Data Plan. The Data Plan includes seven objectives; in general, the plan seeks to make additional data available for research, increase the speed and transparency of data access, and offer services to enable more efficient data use. The services resulting from the Data Plan are intended to improve support for the entire continuum of a research project, from developing a research question to analyzing the results. Several projects are part of Ministry of Health-led work developing a Health Data Platform. Results The projects initiated so far as part of the Data Plan include: • BC Data Scout\textsuperscript{TM}: an online tool that provides aggregate cohort information to inform research question development; • REDCap: software to support privacy-sensitive data collection and management; • INFORM: software to support data collection for complex clinical research studies and trials; • Direct Access: enables Population Data BC to access BC Ministry of Health databases so researchers have access to up-to-date data; • Streamlining: making the data request process more efficient; • New datasets: several projects that will provide new data sources, including patient experience and outcome measures and secondary use data drawn from electronic medical records; and • Inventory: an online catalog for all high-value and linkable data sets available to researchers. Conclusion/Implications The services and tools included in BC’s Data Plan will help researchers develop and deliver world-class research and inform important health care decisions. The patient-oriented focus of these services help to ensure that research is done in partnership with patients and centered on research questions that matter to them

Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group

While advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL), there is also increasing reliance on a patient׳s skills and motivation to optimize all the benefits available. Patient engagement in their own healthcare has been described as the 'blockbuster drug of the century'. In multiple sclerosis (MS), patient engagement is vital if outcomes for the patient, society and healthcare systems are to be optimized. The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely: 1) setting and facilitating engagement by education and confidence-building; 2) increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs); 3) providing credible sources of accurate information; 4) encouraging treatment adherence through engagement; and 5) empowering through a sense of responsibility. Group members independently researched and contributed examples of patient engagement strategies from several countries and examined interventions that have worked well in areas of patient engagement in MS, and other chronic illnesses. The group presents their perspective on these programs, discusses the barriers to achieving patient engagement, and suggests practical strategies for overcoming these barriers. With an understanding of the issues that influence patient engagement in MS, we can start to investigate ways to enhance engagement and subsequent health outcomes. Engaging patients involves a broad, multidisciplinary approach

Joint Healthcare Professional and Patient Development of Communication Tools to Improve the Standard of MS Care

INTRODUCTION Effective communication between patients and healthcare professionals (HCPs) is important to enhance outcomes in multiple sclerosis (MS). However, in practice, patients often report a disconnect in communication. Communication tools to aid patient-HCP communication have a long history of use in many chronic conditions. For example, symptom diaries have been shown to enhance outcomes in cancer, headache and sleep disorder management. MS in the 21st Century, a Steering Group of HCP specialists and patients with MS (PwMS), has created two communication tools designed for use by both patients and their HCPs. METHODS The Steering Group first identified prominent issues in patient-HCP communication through group discussions and survey data. Following this, a series of workshops led to the development of two communication tools as potential solutions to these identified issues in communication. RESULTS The two most prominent issues identified were HCP time constraints during appointments and the misalignment of patient and HCP priorities-the communication tools developed through the workshops were created to address these. The "myMS priorities" tool [see supplementary materials] is designed to maximize the use of consultation time while the "myMS commitments" tool [see supplementary materials] aims to improve patient-HCP shared decision-making. CONCLUSIONS The MS in the 21st Century Steering Group adopted a broad, iterative and collaborative approach in the development of these tools to help ensure they would be as useful as possible to both HCPs and PwMS. These tools have been developed through shared patient-HCP expertise and are based on existing tools in other therapy areas as well as a review of the existing literature and data from MS in the 21st Century Steering Group surveys. The next steps will focus on the validation of these tools through testing them in real-world environments and clinical trials. FUNDING Merck KGaA, Darmstadt, Germany

Substance use as a mechanism for social inclusion among gay, bisexual, and other men who have sex with men in Vancouver, Canada

Background: Previous research demonstrates that substance use preferences and social-sexual environments are highly interrelated for gay, bisexual, and other men who have sex with men (gbMSM).Objective: We conducted a qualitative study to explore the socio-cultural context of substance use among local gbMSM communities in Metro Vancouver, Canada. Methods: Twenty gbMSM were purposively sampled from the larger Momentum Health Study cohort, a sexual health study of gbMSM in Greater Vancouver. Participants were demographically diverse in terms of HIV serostatus, age, income, ethnicity, and area of residence within the city and neighboring suburbs. Community maps generated by participants during formative research served as prompts for semi-structured interviews which were audio recorded and transcribed verbatim. Thematic analysis was used to identify themes of common experience.Results: Three themes were identified. First, participants indicated that substance use is intrinsically social in Vancouver gbMSM communities and functions as both a means of social inclusion and exclusion. Second, a distinction was made between types of substances and the location and context of their use, with specific substances having particular uses and meanings. Third, analysis suggested that gbMSM change their substance use over the life course and that this is affected by shifting priorities as people age. Conclusions: For Vancouver gbMSM communities, substance use serves several socio-cultural functions and can simultaneously serve as both a potential facilitator and barrier for community connection. Future research and health programming should consider venue and context specific messaging and recognize the heterogeneity of substance use within the larger gbMSM population