Public consultation on draft Model Law on Health Data Governance
The Model Law is informed by equity and rights-based principles, among other international, regional and national commitments and best practice.
Transform Health and partners are convening a period of public consultation on a draft Model Law on Health Data Governance, which articulates core elements, guidance and model legal text, informed by equity and rights-based principles, among other international, regional and national commitments and best practice.
The purpose of this consultation period is to gather stakeholder and expert feedback on the draft, including its content and how it is structured. Through this process, we aim to strengthen and validate the draft, while building consensus, alignment and broad support around the core elements.
Download the draft Model Law on Health Data Governance:
Click on the survey to share your feedback on the draft by the 30th of April:
To fully harness the potential of health data for public benefit and improved health outcomes, while also managing risks, protecting individual rights, and ensuring people’s data is protected from misuse, it is important to strengthen the governance of health data through more robust, effective and equitable legislation and regulations.
While several countries and regions are taking steps to address this, approaches vary. By countries and other stakeholders coming together, this provides an opportunity to build on experiences and good practices, and establish a level of consensus around the essential elements that should be included in national legislation and regulation.
Towards this end, Transform Health and partners have been catalysing and supporting the development of a draft Model Law on Health Data Governance, which articulates core elements, guidance and model legal text, informed by equity and rights-based principles, among other international, regional and national commitments and best practice.
To inform the draft model draft Model Law, we have convened multi-stakeholder consultations (led by AeHIN, HELINA and RECAINSA), consulting nearly 500 stakeholders from across 65 countries, and conducted national regulatory landscape reviews across 26 countries. A team of legal experts have led on the drafting of the Model Law and Regulations.
Following the consultation period, the draft model law will be updated to reflect the feedback received. It will then be presented at a side event on the 28th of May 2024, during the World Health Assembly in Geneva. We encourage governments to endorse the model law, as part of a global health data governance framework, through a World Health Assembly resolution in May 2025.
Public survey - the public survey will be widely disseminated to gather broad stakeholder inputs. We welcome inputs through the surveys until the 30th of April.
Transform Health’s Community Forum - this will be an open forum that anyone can join to learn more about the draft model law and to share their feedback and inputs on the draft. The Forum will take place on 29th of April and you can register here.
National and Regional Consultations - Transform Health and partners will convene in-person national consultations and regional consultations to gather inputs on the draft Model Law and Regulations from key stakeholders and experts in the country/region.
Stakeholder-specific engagement - stakeholder specific consultations and outreach are planned with youth and parliamentarians to gather their perspectives on the draft.
FAQs
DRAFT MODEL LAW
Convene your own consultation
We have developed a toolkit for organisations and governments to enable them to convene their own consultations on the draft model law on health data governance, during the public consultation period between 7th and 30th April
Help us amplify the consultation period
Follow Transform Health on LinkedIn and X and help amplify the public consultation period on the draft model health data governance law, between 7th and 30th April 2024.
For additional resources, access the social media toolkit.
If you have any questions, please contact: info@transformhealthcoalition.org