Integrating Data Governance and Mental Health Equity: Insights from ‘Towards a Set of Universal Data Principles’

Curated on Posted on by Stefaan Verhulst

Article by Cindy Hansen: “This recent scholarly work, “Towards a Set of Universal Data Principles” by Steve MacFeely et al (2025), delves comprehensively into the expansive landscape of data management and governance. It is noteworthy to acknowledge the intricate processes through which humans collect, manage, and disseminate vast quantities of data. …To truly democratize digital mental healthcare, it’s crucial to empower individuals in their data journey. By focusing on Digital Self-Determination, people can participate in a transformative shift where control over personal data becomes a fundamental right, aligning with the proposed universal data principles. One can envision a world where mental health data, collected and used responsibly, contributes not only to personal well-being but also to the greater public good, echoing the need for data governance to serve society at large.

This concept of digital self-determination empowers individuals by ensuring they have the autonomy to decide who accesses their mental health data and how it’s utilized. Such empowerment is especially significant in the context of mental health, where data sensitivity is high, and privacy is paramount. Giving people the confidence to manage their data fosters trust and encourages them to engage more openly with digital health services, promoting a culture of trust which is a core element of the proposed data governance frameworks.

Holistic Research Canada’s Outcome Monitoring System honors this ethos, allowing individuals to control how their data is accessed, shared, and used while maintaining engagement with healthcare providers. With this system, people can actively participate in their mental health decisions, supported by data that offers transparency about their progress and prognoses, which is crucial in realizing the potential of data to serve both individual and broader societal interests.

Furthermore, this tool provides actionable insights into mental health journeys, promoting evidence-based practices, enhancing transparency, and ensuring that individuals’ rights are safeguarded throughout. These principles are vital to transforming individuals from passive subjects into active stewards of their data, consistent with the proposed principles of safeguarding data quality, integrity, and security…(More)”.

‘We are flying blind’: RFK Jr.’s cuts halt data collection on abortion, cancer, HIV and more

Curated on Posted on by Stefaan Verhulst

Article by Alice Miranda Ollstein: “The federal teams that count public health problems are disappearing — putting efforts to solve those problems in jeopardy.

Health Secretary Robert F. Kennedy Jr.’s purge of tens of thousands of federal workers has halted efforts to collect data on everything from cancer rates in firefighters to mother-to-baby transmission of HIV and syphilis to outbreaks of drug-resistant gonorrhea to cases of carbon monoxide poisoning.

The cuts threaten to obscure the severity of pressing health threats and whether they’re getting better or worse, leaving officials clueless on how to respond. They could also make it difficult, if not impossible, to assess the impact of the administration’s spending and policies. Both outside experts and impacted employees argue the layoffs will cost the government more money in the long run by eliminating information on whether programs are effective or wasteful, and by allowing preventable problems to fester.

“Surveillance capabilities are crucial for identifying emerging health issues, directing resources efficiently, and evaluating the effectiveness of existing policies,” said Jerome Adams, who served as surgeon general in the first Trump’s administration. “Without robust data and surveillance systems, we cannot accurately assess whether we are truly making America healthier.”..(More)”.

The Future of Health Is Preventive — If We Get Data Governance Right

Curated on Posted on by Stefaan Verhulst

Article by Stefaan Verhulst: “After a long gestation period of three years, the European Health Data Space (EHDS) is now coming into effect across the European Union, potentially ushering in a new era of health data access, interoperability, and innovation. As this ambitious initiative enters the implementation phase, it brings with it the opportunity to fundamentally reshape how health systems across Europe operate. More generally, the EHDS contains important lessons (and some cautions) for the rest of the world, suggesting how a fragmented, reactive model of healthcare may transition to one that is more integrated, proactive, and prevention-oriented.

For too long, health systems–in the EU and around the world–have been built around treating diseases rather than preventing them. Now, we have an opportunity to change that paradigm. Data, and especially the advent of AI, give us the tools to predict and intervene before illness takes hold. Data offers the potential for a system that prioritizes prevention–one where individuals receive personalized guidance to stay healthy, policymakers access real-time evidence to address risks before they escalate, and epidemics are predicted weeks in advance, enabling proactive, rapid, and highly effective responses.

But to make AI-powered preventive health care a reality, and to make the EHDS a success, we need a new data governance approach, one that would include two key components:

  • The ability to reuse data collected for other purposes (e.g., mobility, retail sales, workplace trends) to improve health outcomes.
  • The ability to integrate different data sources–clinical records and electronic health records (EHRS), but also environmental, social, and economic data — to build a complete picture of health risks.

In what follows, we outline some critical aspects of this new governance framework, including responsible data access and reuse (so-called secondary use), moving beyond traditional consent models to a social license for reuse, data stewardship, and the need to prioritize high-impact applications. We conclude with some specific recommendations for the EHDS, built from the preceding general discussion about the role of AI and data in preventive health…(More)”.

Can Real-Time Metrics Fill China’s Data Gap?

Curated on Posted on by Stefaan Verhulst

Case-study by Danielle Goldfarb: “After Chinese authorities abruptly reversed the country’s zero-COVID policy in 2022, global policymakers needed a clear and timely picture of the economic and health fallout.

China’s economy is the world’s second largest and the country has deep global links, so an accurate picture of its trajectory mattered for global health, growth and inflation. Getting a solid read was a challenge, however, since official health and economic data not only were not timely, but were widely viewed as unreliable.

There are now vast amounts and varied types of digital data available, from satellite images to social media text to online payments; these, along with advances in artificial intelligence (AI), make it possible to collect and analyze digital data in ways previously impossible.

Could these new tools help governments and global institutions refute or confirm China’s official picture and gather more timely intelligence?..(More)”.

Artificial intelligence for modelling infectious disease epidemics

Curated on Posted on by Stefaan Verhulst

Paper by Moritz U. G. Kraemer et al: “Infectious disease threats to individual and public health are numerous, varied and frequently unexpected. Artificial intelligence (AI) and related technologies, which are already supporting human decision making in economics, medicine and social science, have the potential to transform the scope and power of infectious disease epidemiology. Here we consider the application to infectious disease modelling of AI systems that combine machine learning, computational statistics, information retrieval and data science. We first outline how recent advances in AI can accelerate breakthroughs in answering key epidemiological questions and we discuss specific AI methods that can be applied to routinely collected infectious disease surveillance data. Second, we elaborate on the social context of AI for infectious disease epidemiology, including issues such as explainability, safety, accountability and ethics. Finally, we summarize some limitations of AI applications in this field and provide recommendations for how infectious disease epidemiology can harness most effectively current and future developments in AI…(More)”.

Announcing the Youth Engagement Toolkit for Responsible Data Reuse: An Innovative Methodology for the Future of Data-Driven Services

Curated on Posted on by Stefaan Verhulst

Blog by Elena Murray, Moiz Shaikh, and Stefaan G. Verhulst: “Young people seeking essential services — whether mental health support, education, or government benefits — often face a critical challenge: they are asked to share their data without having a say in how it is used or for what purpose. While the responsible use of data can help tailor services to better meet their needs and ensure that vulnerable populations are not overlooked, a lack of trust in data collection and usage can have the opposite effect.

When young people feel uncertain or uneasy about how their data is being handled, they may adopt privacy-protective behaviors — choosing not to seek services at all or withholding critical information out of fear of misuse. This risks deepening existing inequalities rather than addressing them.

To build trust, those designing and delivering services must engage young people meaningfully in shaping data practices. Understanding their concerns, expectations, and values is key to aligning data use with their preferences. But how can this be done effectively?

This question was at the heart of a year-long global collaboration through the NextGenData project, which brought together partners worldwide to explore solutions. Today, we are releasing a key deliverable of that project: The Youth Engagement Toolkit for Responsible Data Reuse:

Based on a methodology developed and piloted during the NextGenData project, the Toolkit describes an innovative methodology for engaging young people on responsible data reuse practices, to improve services that matter to them…(More)”.

To Stop Tariffs, Trump Demands Opioid Data That Doesn’t Yet Exist

Curated on Posted on by Stefaan Verhulst

Article by Josh Katz and Margot Sanger-Katz: “One month ago, President Trump agreed to delay tariffs on Canada and Mexico after the two countries agreed to help stem the flow of fentanyl into the United States. On Tuesday, the Trump administration imposed the tariffs anyway, saying that the countries had failed to do enough — and claiming that tariffs would be lifted only when drug deaths fall.

But the administration has seemingly established an impossible standard. Real-time, national data on fentanyl overdose deaths does not exist, so there is no way to know whether Canada and Mexico were able to “adequately address the situation” since February, as the White House demanded.

“We need to see material reduction in autopsied deaths from opioids,” said Howard Lutnick, the commerce secretary, in an interview on CNBC on Tuesday, indicating that such a decline would be a precondition to lowering tariffs. “But you’ve seen it — it has not been a statistically relevant reduction of deaths in America.”

In a way, Mr. Lutnick is correct that there is no evidence that overdose deaths have fallen in the last month — since there is no such national data yet. His stated goal to measure deaths again in early April will face similar challenges.

But data through September shows that fentanyl deaths had already been falling at a statistically significant rate for months, causing overall drug deaths to drop at a pace unlike any seen in more than 50 years of recorded drug overdose mortality data.

The declines can be seen in provisional data from the Centers for Disease Control and Prevention, which compiles death records from states, which in turn collect data from medical examiners and coroners in cities and towns. Final national data generally takes more than a year to produce. But, as the drug overdose crisis has become a major public health emergency in recent years, the C.D.C. has been publishing monthly data, with some holes, at around a four-month lag…(More)”.

The Preventative Shift: How can we embed prevention and achieve long term missions

Curated on Posted on by Stefaan Verhulst

Paper by Demos (UK): “Over the past two years Demos has been making the case for a fundamental shift in the purpose of government away from firefighting in public services towards preventing problems arriving. First, we set out the case for The Preventative State, to rebuild local, social and civic foundations; then, jointly with The Health Foundation, we made the case to change treasury rules to ringfence funding for prevention. By differentiating between everyday spending, and preventative spending, the government could measure what really matters.

There has been widespread support for this – but also concerns about both the feasibility of measuring preventative spending accurately and appropriately but also that ring-fencing alone may not lead to the desired improvements in outcomes and value for money.

In response we have developed two practical approaches, covered in two papers:

  • Our first paper, Counting What Matters, explores the challenge of measurement and makes a series of recommendations, including the passage of a “Public Investment Act”, to show how this could be appropriately achieved.
  • This second paper, The Preventative Shift, looks at how to shift the culture of public bodies to think ‘prevention first’ and target spending at activities which promise value for money and improve outcomes…(More)”.

Data Sovereignty and Open Sharing: Reconceiving Benefit-Sharing and Governance of Digital Sequence Information

Curated on Posted on by Stefaan Verhulst

Paper by Masanori Arita: “There are ethical, legal, and governance challenges surrounding data, particularly in the context of digital sequence information (DSI) on genetic resources. I focus on the shift in the international framework, as exemplified by the CBD-COP15 decision on benefit-sharing from DSI and discuss the growing significance of data sovereignty in the age of AI and synthetic biology. Using the example of the COVID-19 pandemic, the tension between open science principles and data control rights is explained. This opinion also highlights the importance of inclusive and equitable data sharing frameworks that respect both privacy and sovereign data rights, stressing the need for international cooperation and equitable access to data to reduce global inequalities in scientific and technological advancement…(More)”.

Patients’ Trust in Health Systems to Use Artificial Intelligence

Curated on Posted on by Stefaan Verhulst

Paper by Paige Nong and Jodyn Platt: “The growth and development of artificial intelligence (AI) in health care introduces a new set of questions about patient engagement and whether patients trust systems to use AI responsibly and safely. The answer to this question is embedded in patients’ experiences seeking care and trust in health systems. Meanwhile, the adoption of AI technology outpaces efforts to analyze patient perspectives, which are critical to designing trustworthy AI systems and ensuring patient-centered care.

We conducted a national survey of US adults to understand whether they trust their health systems to use AI responsibly and protect them from AI harms. We also examined variables that may be associated with these attitudes, including knowledge of AI, trust, and experiences of discrimination in health care….Most respondents reported low trust in their health care system to use AI responsibly (65.8%) and low trust that their health care system would make sure an AI tool would not harm them (57.7%)…(More)”.