Data sharing and privacy (DSP) resources

Effective data sharing is foundational to advancing integrated care, enabling coordinated clinical pathways, implementing programs, monitoring performance across OHTs/PCNs and their member organizations, and responding directly to challenges identified by OHTs as barriers to integrated-care delivery. It is also foundation to the top OHT and PCN priority of improving primary-care access and attachment.

RISE is pleased to make available a data-sharing agreement (DSA) toolkit that includes:

• a DSA template – developed by BLG and with the input of 20+ OHT and regional representatives – as an editable and adaptable template for use by all OHTs and their member organizations
• four tools – again developed with the input of an advisory group – to operationalize the use of the template and enable the practical implementation of data sharing in OHTs
  • frequently asked questions (FAQ) to help with how data sharing works under the DSA template (and PHIPA)
  • decision tree - both a one-page decision tree and an ‘unpacked’ decision tree - to help select a ‘lane’ for sharing data (or a means of sharing Personal Health Information) under the DSA
  • roadmap for ‘new project’ data sharing and governance to help operationalize data sharing – under the DSA template – with any ‘new project’ (e.g., improving chronic disease prevention and management, increasing primary-care access and attachment)
  • data sharing ‘role’ decision framework to help assess organizational readiness and other considerations for serving as an agent or health information network provider (HINP) for other health information custodians (HICs) under PHIPA
• a RISE brief to provide context for and tips for the use of the DSA template and tools, including links to additional resources.

The DSA toolkit was introduced in a launch webinar, and the slides and recording are available on the launch webinar webpage. Some DSP implementation supports are already available, and more are now in development. The OHT DSP capability self-assessment survey is also now live.

RISE is now making available – and inviting feedback on – a draft privacy management and data sharing (PMDS or privacy) toolkit that includes the following tools:

1. briefing on PMDS for OHT executives and governors (and OHT member organization executives) [three-plus page briefing]
2. briefing on PMDS for Primary Care Network (PCN) Clinical Leads (and PCN leadership councils) [three-and-a-half page briefing]
3. privacy-management essentials for physicians, nurse practitioners and other professionals working in small primary-care practices and other small healthcare organizations [two-page table]
4. privacy-management essentials for staff of health and community care organizations [two-page table]
5. privacy models for information sharing [one-page description]
6. use-case library [one-page overview and 14 one-page use cases ranging from primary-care access and attachment to chronic disease prevention and management, cancer screen participation, and secure messaging] – coming soon
7. scenarios library [one page addressing privacy breaches as well as third-part technology service providers and shared systems]
8. OHT capabilities self-assessment survey [tool 8; 46 questions that allow an OHT – working in partnership with its member organizations – to assess its data sharing and privacy capabilities].

We have also added a question, and provided a draft response, to the Q&A tool in our DSA toolkit (tool 9). For tools 1-4 in particular, we have also created a two-page overview of all of the tools now available in the DSA toolkit and the PMDS (privacy) toolkit.

The draft PMDS (or privacy) toolkit was developed with input from our privacy experts, OHTs that completed the self-assessment survey, OHT and regional representatives participating in our implementation supports (e.g., drop-in sessions and workshop series), and OHT representatives participating in interviews about the use cases in which their work is profiled. Tools 1, 3 and 4 drew heavily from the IPC privacy-management handbook for small healthcare organizations. The draft toolkit also built on the province-wide needs assessment – engaging 15+ OHTs and 100+ providers – that identified: 1) uneven privacy knowledge; 2) variable readiness for and uncertainty navigating PHIPA across multi-sector partnerships within OHTs; and 3) broader gaps in privacy governance, processes and technology as key barriers to implementation.

The toolkit gives particular attention to the key provincial priority of primary-care enablement and to addressing the particular challenges faced by small primary-care practices and organizations that were revealed through the self-assessment survey (both with content and with formats, such as each tool being ‘short and sweet’ and focused on actionable insights for busy primary- and integrated-care clinical and executive leaders).

We welcome input on the draft PMDS (or privacy) tools, including:

• key messages about what should be emphasized (more), added, changed, corrected or dropped
• suggestions for additional resources that can be linked to.

Please send your feedback to rise@mcmaster.ca or attend the November 11 (1-1:30 pm) and December 7 (1:30-2 pm) drop-in sessions where you can ask questions and provide feedback.

We hope to make available the finalized version of the toolkit by the end of 2026. We will have one final drop-in session related to the then finalized toolkit on January 11 (1:30-2 pm).

The toolkits and related implementation supports will help to strengthen targeted privacy, data-sharing and information-management capabilities, supporting the safe and trusted use of shared health information in integrated-care initiatives. They intended to help OHTs advance their clinical priorities. OHTs who confirm – via self-assessment – strong data sharing and privacy capabilities may consider these tools optional.