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Data Governance Playbook
  • Health data governance: a playbook for non-technical leaders
    • Why data governance is important in healthcare
    • Who is this playbook for?
    • How to use this playbook
    • Other related resources
  • Index
  • Play one: Implementing data governance in healthcare
    • The value of data governance for data-informed healthcare projects
    • How to implement a data governance framework for a healthcare organisation or project
      • 1. Data assets
      • 2. People
      • 3. Policies and processes
      • 4. Standards and technologies
    • Resources relating to this play
  • Play two: Understanding and mapping health data ecosystems
    • Data ecosystems in healthcare
    • Data governance and trustworthy data ecosystems
    • Mapping the data ecosystem
      • Use case 1: Mapping the ecosystem of a Covid-19 symptom tracker in the UK
      • Use case 2: Identifying current stakeholders to reduce snakebite mortality and morbidity in India
    • Resources related to this play
  • Play three: Roles and responsibilities in health data governance
    • Roles involved in health data governance
      • Senior data leader
      • Health system leader
      • Policy leader
      • Health project partner
      • Governmental body
      • Senior executive leader
    • How to enlist support from stakeholders
    • Resources relating to this play
  • Play four: Making data interoperable
    • What is interoperability and how is it relevant to healthcare?
    • Standards for data and interoperability
    • Existing standards for data
    • Data adaptors
    • When to use an adaptor
    • Resources relating to this play
  • Play five: Demonstrating the value of health data governance: case studies
    • Primary care data use: MedMij platform
    • Using research data: INSIGHT Health Data Research Hub
    • Using healthcare data for other purposes: Infectious Diseases Data Observatory
  • Play six: Emerging uses of data and technology in the health sector
    • Emerging uses of health data
    • Emerging technologies to support health data management
    • Resources relating to this play
  • Play seven: Assessing the legal, regulatory and policy context for sharing health data
    • Data protection laws and policies
    • Intellectual property
    • Other regulations and laws impacting use of health data
    • Socio-cultural norms
    • Resources relating to this play
  • Play eight: Managing risks when handling personal data
    • Managing personal data responsibly and ethically in healthcare projects
    • What is personal data?
    • Data protection regulations
    • Recognising personal data in healthcare projects
    • Impacts from use of healthcare data
    • Minimising risk - practical approaches
    • Appendix: Risks from personal data exposure and how harms can be mitigated
  • Play nine: How to set up successful data sharing partnerships
    • Understanding how data sharing occurs in the health sector
    • A step-by-step guide to setting up successful data sharing partnerships
      • Step 1. Understand the purpose of sharing data, and with whom
      • Step 2. Define the principles that will guide how data is shared
      • Step 3. Build and maintain relationships with your data sharing partners
    • Appendix: International frameworks for data sharing principles
    • Resources relating to this play
  • Play ten: Sharing health data: data agreements and technologies
    • Common types of data sharing agreements
    • How to choose the best method of sharing data
      • Step 1: Decide how widely you need or want to share data
      • Step 2: Decide on the type of agreement required for sharing data
      • Step 3. Consider how technology can facilitate data sharing and access
    • Appendix: Choosing technology to support data sharing and access
    • Resources relating to this play
  • Play eleven: Cross-border data sharing
    • What is cross-border data sharing?
    • Current trends and global discussions on cross-border data sharing
    • Overcoming challenges with cross-border data sharing
  • How to support trustworthy data sharing: Checklist
  • Slides to communicate the benefits of data governance to key health stakeholders
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  • Why is primary care data important?
  • Enabling electronic health records data sharing
  • What can we learn from this case study?
  • What is challenging?

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  1. Play five: Demonstrating the value of health data governance: case studies

Primary care data use: MedMij platform

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Last updated 3 years ago

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Key findings

  • 30 new products developed to help patients track their health and wellbeing and share data with healthcare professionals.

  • Savings of up to 200 million euros over 10 years identified from implementation of the platform.

Why is primary care data important?

Patients' data collected in electronic health records by one healthcare professional may need to be accessed and shared with other healthcare professionals. For example, post-surgery, health data for a patient with chronic health issues may need to be shared with a rehabilitation therapist and with a pharmacist to ensure continuity of care from the acute setting to the community, while also balancing therapies and interventions that manage pre-existing health issues. Data privacy and protection regulations in many jurisdictions give the patient the right to decide who they share their health data with, even if it is between healthcare professionals within primary care.

Enabling electronic health records data sharing

In The Netherlands, a platform (known as a personal health environment) called is allowing patients to access their electronic health records and share their data securely. MedMij enables data sharing between patients, healthcare providers, health systems and the Dutch Patients Association through specific data governance processes and policies, including:

  • Healthcare providers must register to receive access to health data. The national health department manages the registrations.

  • Technology companies providing the electronic health records platform must also register and be approved to ensure they meet regulations and are secure.

  • MedMij allows patients to set consent rules for when their health data can be shared.

  • MedMij then enables data sharing, such as with healthcare professionals, in line with governing data privacy regulations and the patients’ consent rules.

To transfer health data securely, MedMij uses the Fast Healthcare Interoperability Resources (HL7 FHIR) API standards. Use of standards and data models are continually updated in their .

What can we learn from this case study?

The quality of personal healthcare provided across The Netherlands is enhanced by MedMij enabling secure, patient-consented health data to be shared while complying with data protection regulations.

What is challenging?

The capabilities of the platform are enshrined in policies from the health department, but are not yet governed by specific legislation.

The platform has also spurred the growth of new businesses and start-ups: there are now 30 registered apps that connect with the MedMij platform, and unlike in other countries where health data is often managed by the caregiver, the . MedMij is forecasted to save citizens 120 million euros over 10 years in improved self-management of health, and governments are expected to save .

MedMij
information knowledge base
MedMij ecosystem enables patients to be in control of their health data
200 million euros over 10 years from optimised healthcare planning