Details of work required: Development a self assessment tool that would be used by organisations to assess and strengthen their implementation of the health data governance principles. This tool would serve as a resource (a guide and benchmark) for organisations that have endorsed the principles to determine where they are in terms of implementation, e.g to assess if they are at early, emerging or mature stages.. The assessment tool will also be used by organisations to guide their practical implementation of the health data governance principles and what that could look like.
The consultant will conduct research and mapping of existing similar self-assessment tools and implementation frameworks to explore explore best practices and ideal elements that could be used by various organisations (non-governmental and civil society organisations, international organisations, donors, private sector) to assess the implementation of the principles but also provide guidance and recommendations to support with implementing the principles regardless of the maturity level or size of the organisation. This research and mapping will be complemented by an analysis of the results of a survey that has already been carried out that aims to understand how endorsers of the Principles are implementing them and any challenges they have faced. Based on this, the consultant will develop a draft tool, test it with approximately 8-10 organisations, and make any revisions as needed.
Expected duration: the work should be carried out between 1 July and 31 October.
Background
More robust, effective and equitable governance of health data is needed to ensure we are fully harnessing its potential for public benefit and improved health outcomes, while also managing risks, protecting individual rights, and ensuring people’s data is protected from misuse. This is important to lay the foundation for improved public trust in health data systems where individuals feel protected, respected and in control of their own data, while allowing institutions working to protect the health and well-being of the population to access and use it for the public benefit.
In April 2022, Transform Health launched the Health Data Governance Principles, which aim to align policymakers and other stakeholders around a shared vision of equitable health data governance, to maximise the public value of health data whilst protecting individual rights. They are a culmination of an extensive and inclusive multi-stakeholder process, including eight global and regional workshops, with a youth-specific consultation, as well as a 1-month public consultation period, bringing together the perspectives and expertise of over 200 contributors from across geographies and sectors. The Principles bring a human rights and equity lens to the use of data, and are oriented toward supporting sustainable and resilient public health systems, to achieve Universal health Coverage.
More than 150 organisations have endorsed the health data governance principles, at global, regional and national levels and covering a wide range of constituencies, including international and national NGOs, multilateral organisations, foundations, academia and research institutes, Private sector, regional networks, national institutes and professional associations. There have been requests from partners and implementing organisations about resources to guide these organisations in the practical implementation of the principles and to self-assess their level of maturity in applying them. Considering the diversity of the endorsing organisations in terms of scope, size, and location, this self-assessment tool should be designed in a way that can assist a wide range of organisations with the practical application of the principles.
It is important to note that this tool is not meant for comparing organisations, nor is it a mandatory requirement for endorsers, but rather serves as a means for self-evaluation regarding implementation of the health data governance principles and a resource to support with implementation. A complementary piece of work is being carried out by Transform Health to develop a draft model legal and regulatory text (articulating core elements for health data governance legislation and regulation, underpinned by the Principles), which would support governments in strengthening national approaches.
Scope of work
In support of this work, Transform Health is seeking to recruit a consultant to lead the development of a self-assessment tool to support organisations to assess and guide the practical implementation of the health data governance principles. This will include the following key activities:
- Landscape assessment of existing similar self-assessment tools to identify good practices and elements and the practicality of their use.
- Review the results of the survey that was carried out in 2023 to explore how organisations that have endorsed the Principles are implementing them, to understand what kind of guidance and support is needed.
- Develop a self-assessment tool which will enable organisations to self-assess their current implementation of the HDG principles and maturity or implementation, as well as provide guidance and recommendations to support their practical implementation.
- Speak to approximately 8-10 organisations who have endorsed the principles and get their feedback on the tool and to test its usability.
- Update and finalise the draft self assessment tool based on the feedback from the various organisations
The consultant will work closely with the Transform Health Enabling Function (Secretariat) and members of the Health Data Governance working group.
Key deliverables and deadlines
- Overview of similar tools, including key elements that would be useful for the current too. 14th July 2024.
- Draft assessment tool (e.g. Excel or other widely accessible format) for feedback. Deadline 19th August 2024. (initial feedback from Advisory group by 1st August 2024).
- Assessment tool tested with organisations (approx 8-10) for their input and feedback to the usability. Deadline 20th September 2024
- Self assessment tool is updated and finalised based on feedback and testing. Deadline: 22nd October 2024.
Timelines
- RFP published: 4 June 2024
- Deadline to submit proposals for consultancy: 17 June 2024
- Consultant selected: 28 June 2024
- Consultancy start date: ~1 July 2024
- Deadline for completion of work: 31 October 2024
Profile and experience
We are looking for a consultant with health data governance expertise, particularly as it relates to organisational policy and practices. . We are particularly interested in a consultant with experience in development assessment tools. Preference will be given to consultants based in L/LMICs.
Application process
To apply, please submit the following [emailprotected]by 09:00 CET on 17 June 2024:
- Your CV and cover letter outlining your experience relevant to this consultancy.
- Your proposed daily rate and number of days to carry out this consultancy, including a breakdown by task/deliverable.
About Transform Health
Transform Health is a global coalition of organisations dedicated to achieving health for all in the digital age. Transform Health sets out to build a global movement that brings together organisations and institutions across different sectors, committed to achieving universal health coverage by 2030 by expanding the use of digital technology and increasing access to data. We campaign and collaborate with the individuals, communities, governments, organisations and institutions that are most affected by the lack of access to equitable, affordable and high-quality healthcare.
We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept All”, you consent to the use of ALL the cookies. However, you may visit "Cookie Settings" to provide a controlled consent.
