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Global thought leaders and experts discuss principles of health data governance

On 7 July 2021, The Lancet and Financial Times Commission Governing health futures 2030: Growing up in a digital world (hereafter: ‘GHFutures2030’ or ‘The Commission’), in collaboration with Transform Health, hosted a virtual consultation at Wilton Park titled ‘Governing health futures: A joint consultation on health data governance principles.’

The event brought together 27 global thought leaders and experts to review the draft health data governance principles (hereafter: ‘the Principles’) which have emerged from a series of workshops (four regional and one global) organised for Transform Health by PATH in collaboration with AeHIN, RECAINSA, BID Learning Network, and Mwan Events. Developed by and for national digital health stakeholders, the goal of the Principles is to provide a globally unifying vision for health data governance that centres on equity, ethics, and human rights.

GHFutures2030 Co-chair, Professor Ilona Kickbusch, opened the event and highlighted how governance of health data, framed through the lens of data solidarity, is a crucial tenet of the Commission’s work in digital health governance.

“We all want a true public value attached to data,” Kickbusch said.

Kickbusch emphasised the opportune timing of the Commission’s upcoming report launch and public consultation phase of the Principles in light of the WHO’s recent global report on Artificial Intelligence (AI) in health and six guiding principles for its design and use. As a global public good, health data not only helps us better understand health inequities and their underlying contributing factors within health systems and services but also has the potential to drive equity such that it can benefit overall population health and well-being. However, inequity can also arise because of the collection and use of data.

“Health data must be governed carefully and in accordance with the pursuit of health equity [to ensure that] such data are not misused for bias, repression, or other ways that don’t recognize the rights of individuals to participate equitably within the global society,” said GHFutures2030 Commissioner and Co-chair of Transform Health, Dykki Settle.

During the consultation, participants had the opportunity to give feedback on the Principles and raise crucial considerations that must be taken into account to ensure the principles are inclusive and sustainable.

Moreover, participants emphasised the importance of working with and engaging existing multi-sectoral stakeholders at all levels so the Principles can achieve maximum impact post-launch. Interesting discourse surfaced around how the Principles can fit in with existing health data governance initiatives and be translated into effective frameworks to support digital transformations in health at all levels.

“It is important to think about health data governance within the context of the governance of data. The cross-sectoral conversations that we need to have (between the health sector, governments, and the private sector) about digital health… are around how we make health data governance part of wider data architecture,” said Marelize Gorgens, Senior Monitoring and Evaluation Specialist at the World Bank Group in the Health, Nutrition and Population Global Practice, further stressing the importance of data for economic and other development.

A key point raised by the participants is that a whole-of-government approach is needed to ensure implementation of the Principles is not siloed/fragmented, but rather, systematically driven while bearing in mind specific sectoral needs. Moreover, there needs to be a dialogue across governments and inclusive of civil society to facilitate learning across regions and peer networks.

“We have to recognise that a lot needs to be in place to benefit from [the Principles]… and we need to start doing the work now, particularly on the African continent,” said Huguette Diakabana, a member of the World Health Organization’s (WHO) Digital Health Technical Advisory Group.

Diakabana further emphasised the importance of political will and trust-building in developing digital strategies which promote the effective governance of health data.

“The interconnected web of big data informs not only on individuals but on their communities. The communitarian nature of data has important implications for its use, especially when we think about data ownership and data sovereignty,” said Meg Doerr, Associate Director at Sage Bionetworks. “Health data can be a point for data extractivism, so it is important to consider the broad use of data so that all community members can be informed about the actual processes.”

Ultimately, these discussions – alongside the youth consultation which took place on the 14th July – will contribute to shaping a revised version of the health data governance principles prior to the public consultation period scheduled to take place later this year.  The Commission looks forward to supporting the next steps of the Principles and is eager for the launch of the Commission report on the 25th October at this year’s World Health Summit.

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