Suchergebnisse

ObjectivesPatient Support Programs (PSPs) provide real-world evidence on short-term outcomes and drug adherence for specialty care. These data are collected directly from patients by pharmaceutical companies. Data linkage is facilitated by a publicly-funded health research institute which houses population-based, individual-level health administrative data for 14 million Ontario residents in Canada since 1992. Linkage provides a more comprehensive and transparent view of patients' pathways and care.
ApproachIndustry-funded research conducted through the data & analytic service must align with the institute's mission, vision and values, and demonstrate a clear public benefit. For transparency, and to support broader public benefit and research access, final deliverables and analytic plans are posted on the institute's website. Privacy impact assessments are conducted to ensure ethics approvals, consent and data sharing agreements are established, prior to data importation. To safeguard privacy, designated data covenantors encrypt and link the PSP data with in-house data holdings. Analyses are performed by senior analytic staff, providing researchers with summary-level reports.
ResultsSince 2016, the institute has worked with organizations to link data for research, including PSP data on thousands of patients, enabling crucial insight into treatment patterns, drug adherence, costs and long-term outcomes.
ConclusionLinkage of privately-owned PSP data with administrative health data at the institute, provides opportunities to identify gaps in care and improve quality of research. Data challenges around bias, transparency, completeness, and comprehensiveness are minimized.
ImplicationsResults provide decision-makers and healthcare professionals with a trusted and comprehensive understanding of patient care pathways to improve health outcomes.

ObjectiveTo provide an update on the key characteristics, refinements to project flow, and future opportunities for a program providing customized research evidence to health system policymakers and providers.
ApproachWith a goal to inform health system decision making, the program answers research questions posed by health system requestors that can be answered with linked, population-based administrative data. Now in its 10th year of operation, the program has been refined over time to improve efficiency, usefulness of research products, and requestor satisfaction. Satisfaction surveys and individual-level engagements with requestors are used to collect feedback on the needs of an increasingly diverse group of requests.
ResultsWith 508 requests, 82 Data Sharing Agreements, and 257 unique requestors since its inception, the program informs governmental decision making, evaluates intervention effectiveness, and aids grassroots organizations' planning for services. Notable updates to the program include, inserting multiple opportunities for connection between the program and requestors through the project life cycle to understand goals and needs; assigning staff scientists to shepherd projects and promote efficiency; training coordinators to review privacy impact assessments; and (soon) accepting a broader range of projects to include data beyond the health sector e.g. education.
ConclusionThis program continues to improve and is an exemplar of sustainable approaches to supporting health system requestors with evidence from administrative data in program evaluation, planning and policy change.
ImplicationsBeing responsive to requestor needs has allowed the program to attract an increasingly diverse range of requesters who can obtain impactful and timely research evidence.