The BC SUPPORT Unit (the Unit) is a multi-partner organization currently in its start-up phase preparing to support, streamline and increase patient-oriented research in BC. We define patient-oriented research as research that engages patients as partners and focuses on patient-identified priorities with the goals of improving patient experiences, health outcomes and the health system overall. The Unit will have two main roles: providing services to researchers, patients, health care providers and health system decision makers, and facilitating initiatives identified as provincial priorities. The BC unit is one of several being established across the country as part of Canada’s Strategy for Patient-Oriented Research(SPOR) led by the Canadian Institutes of Health Research (CIHR).
Provincial data platform update: Offerings for 2016 identified
British Columbia’s multi-partner vision for a provincial data platform is coming to life and this is good news for research in the province. This federated, shared data platform is being built on leading privacy and security practices and will allow a diverse and growing number of qualified researchers to access data for use in exciting new ways that will improve the health system and the health of British Columbians. The access portal – for those involved in patient-oriented and other types of research – will be Population Data BC (PopData). The BC SUPPORT Unit is helping the Ministry of Health, PopData and others to fund, plan and facilitate access to the platform which is separate but integral to the Unit.
The all-too-familiar current data landscape includes routes for data access that are not always clear or consistently applied, data access that is often slow and generally culminates in access to data that are far from contemporaneous. Furthermore, despite unique data and excellent individual data systems, not all potential data sources are linkable and research-ready. Copies of full, raw data sets are made and move around the system more than is ideal. The provincial data platform is being designed to address these current limitations.
As part of this process, provincial data platform offerings for 2016 have been identified: The initial contribution will be from the Ministry’s administrative data holdings. These include cohort selection capabilities allowing researchers to determine aggregate numbers of research subjects who meet criteria of interest (and thus early detection of research questions which are not feasible due to data limitations). The aim is to have version 1.0 available via PopData by April 1. Additional data sources will be offered via PopData, beginning with Pharmanet and emergency department data from the National Ambulatory Care Reporting System. Furthermore, plans are underway for more timely data for existing data sources at PopData with currency matching what is available to the Ministry. Goals have also been established to create streamlined processes for researchers to access Ministry and health authority data.
Once the provincial data platform has begun to mature, all participants (see Figure 1) will have the potential to both contribute to and access its secure, virtual collection of data, drawing from a ‘single source of truth’. Put simply, data will remain in their respective source environment whenever practical, and only be assembled and linked when needed, as authorized by agreement, for a time-limited agreed upon purpose. This virtual federated environment will allow data providers to control when and how they participate and still support a more nimble process, as opposed to a physical centralized environment where data are provided to an organization and centrally held.
The conversation has begun in earnest among a growing group of provincial data platform and BC SUPPORT Unit data stakeholders including some of the province’s health authorities, PopData, C2E2, CHEOS, MSFHR and Genome BC. With momentum building, additional organizations and patient representatives will be invited to participate in 2016 as the data circle expands and stakeholders collectively inform planning, working through unresolved questions in a structured way. For more information, please email firstname.lastname@example.org.
Figure 1. Provincial data platform vision (click image to see larger version)
(EMR = electronic medical record)
Patient engagement curriculum tested in BC ready for next steps
Patient engagement will be one of the four main functions of the BC SUPPORT Unit regional centres under development (and of the provincial office for the Vancouver Coastal region). As covered in our October update, a patient engagement curriculum, spearheaded by CIHR and planned by a national working group, is being created. It’s our intention to have regional centre and provincial office personnel use the curriculum to recruit, train and support all stakeholder groups in patient engagement.
Last month, small groups of patients and researchers in Victoria were walked through the proposed first module of the curriculum to help assess its effectiveness. Fifteen participants provided feedback during and after the session using a combination of focus group discussion, written feedback, and an online survey.
The evaluations have now been analyzed and it’s been concluded that overall, the proposed training would be very helpful: Most researchers and all of the patient representatives found the day worthwhile and informative. By a wide margin, participants felt that the co-learning model would be valuable and that much would be gained by conducting the training face-to-face versus having it online. On the whole, the proposed learning activities were well-received.
A meeting of the national curriculum reference group has been scheduled for December 8 in Ottawa and will include a presentation on what was learned and a discussion about next steps. If you are interested in learning more about this training as it develops, please contact Colleen McGavin at email@example.com.
Connecting with stakeholders
Members of our Interim Operations Team continue to make presentations to various stakeholder groups interested in learning in person about SPOR and the development of the BC SUPPORT Unit. When you meet with us in person, we are able to hear your ideas about critical success factors for the Unit and how you might be able to get involved in the Unit’s regular operations as they roll out. To book a presentation, please see our Contact page.