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)”.

Trump’s shocking purge of public health data, explained

Curated on Posted on by Stefaan Verhulst

Article by Dylan Scott: “In the initial days of the Trump administration, officials scoured federal websites for any mention of what they deemed “DEI” keywords — terms as generic as “diverse” and “historically” and even “women.” They soon identified reams of some of the country’s most valuable public health data containing some of the targeted words, including language about LGBTQ+ people, and quickly took down much of it — from surveys on obesity and suicide rates to real-time reports on immediate infectious disease threats like bird flu.

The removal elicited a swift response from public health experts who warned that without this data, the country risked being in the dark about important health trends that shape life-and-death public health decisions made in communities across the country.

Some of this data was restored in a matter of days, but much of it was incomplete. In some cases, the raw data sheets were posted again, but the reference documents that would allow most people to decipher them were not. Meanwhile, health data continues to be taken down: The New York Times reported last week that data from the Centers for Disease Control and Prevention on bird flu transmission between humans and cats had been posted and then promptly removed…

It is difficult to capture the sheer breadth and importance of the public health data that has been affected. Here are a few illustrative examples of reports that have either been tampered with or removed completely, as compiled by KFF.

The Behavioral Risk Factor Surveillance System (BRFSS), which is “one of the most widely used national health surveys and has been ongoing for about 40 years,” per KFF, is an annual survey that contacts 400,000 Americans to ask people about everything from their own perception of their general health to exercise, diet, sexual activity, and alcohol and drug use.

That in turn allows experts to track important health trends, like the fluctuations in teen vaping use. One recent study that relied on BRFSS data warned that a recent ban on flavored e-cigarettes (also known as vapes) may be driving more young people to conventional smoking, five years after an earlier Yale study based on the same survey led to the ban being proposed in the first place. The Supreme Court and the Trump administration are currently revisiting the flavored vape ban, and the Yale study was cited in at least one amicus brief for the case.

This survey has also been of particular use in identifying health disparities among LGBTQ+ people, such as higher rates of uninsurance and reported poor health compared to the general population. Those findings have motivated policymakers at the federal, state and local levels to launch new initiatives aimed specifically at that at-risk population.

As of now, most of the BRFSS data has been restored, but the supplemental materials that make it legible to lay people still has not…(More)”.

Empowering open data sharing for social good: a privacy-aware approach

Curated on Posted on by Stefaan Verhulst

Paper by Tânia Carvalho et al: “The Covid-19 pandemic has affected the world at multiple levels. Data sharing was pivotal for advancing research to understand the underlying causes and implement effective containment strategies. In response, many countries have facilitated access to daily cases to support research initiatives, fostering collaboration between organisations and making such data available to the public through open data platforms. Despite the several advantages of data sharing, one of the major concerns before releasing health data is its impact on individuals’ privacy. Such a sharing process should adhere to state-of-the-art methods in Data Protection by Design and by Default. In this paper, we use a Covid-19 data set from Portugal’s second-largest hospital to show how it is feasible to ensure data privacy while improving the quality and maintaining the utility of the data. Our goal is to demonstrate how knowledge exchange in multidisciplinary teams of healthcare practitioners, data privacy, and data science experts is crucial to co-developing strategies that ensure high utility in de-identified data…(More).”

Cities, health, and the big data revolution

Curated on Posted on by Stefaan Verhulst

Blog by Harvard Public Health: “Cities influence our health in unexpected ways. From sidewalks to crosswalks, the built environment affects how much we move, impacting our risk for diseases like obesity and diabetes. A recent New York City study underscores that focusing solely on infrastructure, without understanding how people use it, can lead to ineffective interventions. Researchers analyzed over two million Google Street View images, combining them with health and demographic data to reveal these dynamics. Harvard Public Health spoke with Rumi Chunara, director of New York University’s Center for Health Data Science and lead author of the study.

Why study this topic?

We’re seeing an explosion of new data sources, like street-view imagery, being used to make decisions. But there’s often a disconnect—people using these tools don’t always have the public health knowledge to interpret the data correctly. We wanted to highlight the importance of combining data science and domain expertise to ensure interventions are accurate and impactful.

What did you find?

We discovered that the relationship between built environment features and health outcomes isn’t straightforward. It’s not just about having sidewalks; it’s about how often people are using them. Improving physical activity levels in a community could have a far greater impact on health outcomes than simply adding more infrastructure.

It also revealed the importance of understanding the local context. For instance, Google Street View data sometimes misclassifies sidewalks, particularly near highways or bridges, leading to inaccurate conclusions. Relying solely on this data, without accounting for these nuances, could result in less effective interventions…(More)”.

Randomize NIH grant giving

Curated on Posted on by Stefaan Verhulst

Article by Vinay Prasad: “A pause in NIH study sections has been met with fear and anxiety from researchers. At many universities, including mine, professors live on soft money. No grants? If you are assistant professor, you can be asked to pack your desk. If you are a full professor, the university slowly cuts your pay until you see yourself out. Everyone talks about you afterwards, calling you a failed researcher. They laugh, a little too long, and then blink back tears as they wonder if they are next. Of course, your salary doubles in the new job and you are happier, but you are still bitter and gossiped about.

In order to apply for NIH grants, you have to write a lot of bullshit. You write specific aims and methods, collect bios from faculty and more. There is a section where you talk about how great your department and team is— this is the pinnacle of the proverbial expression, ‘to polish a turd.’ You invite people to work on your grant if they have a lot of papers or grants or both, and they agree to be on your grant even though they don’t want to talk to you ever again.

You submit your grant and they hire someone to handle your section. They find three people to review it. Ideally, they pick people who have no idea what you are doing or why it is important, and are not as successful as you, so they can hate read your proposal. If, despite that, they give you a good score, you might be discussed at study section.

The study section assembles scientists to discuss your grant. As kids who were picked last in kindergarten basketball, they focus on the minutiae. They love to nitpick small things. If someone on study section doesn’t like you, they can tank you. In contrast, if someone loves you, they can’t really single handedly fund you.

You might wonder if study section leaders are the best scientists. Rest assured. They aren’t. They are typically mid career, mediocre scientists. (This is not just a joke, data support this claim see www.drvinayprasad.com). They rarely have written extremely influential papers.

Finally, your proposal gets a percentile score. Here is the chance of funding by percentile. You might get a chance to revise your grant if you just fall short….Given that the current system is onerous and likely flawed, you would imagine that NIH leadership has repeatedly tested whether the current method is superior than say a modified lottery, aka having an initial screen and then randomly giving out the money.

Of course not. Self important people giving out someone else’s money rarely study their own processes. If study sections are no better than lottery, that would mean a lot of NIH study section officers would no longer need to work hard from home half the day, freeing up money for one more grant.

Let’s say we take $200 million and randomize it. Half of it is allocated to being given out in the traditional method, and the other half is allocated to a modified lottery. If an application is from a US University and passes a minimum screen, it is enrolled in the lottery.

Then we follow these two arms into the future. We measure publications, citations, h index, the average impact factor of journals in which the papers are published, and more. We even take a subset of the projects and blind reviewers to score the output. Can they tell which came from study section?…(More)”.

The Attention Crisis Is Just a Distraction

Curated on Posted on by Stefaan Verhulst

Essay by Daniel Immerwahr: “…If every video is a starburst of expression, an extended TikTok session is fireworks in your face for hours. That can’t be healthy, can it? In 2010, the technology writer Nicholas Carr presciently raised this concern in “The Shallows: What the Internet Is Doing to Our Brains,” a Pulitzer Prize finalist. “What the Net seems to be doing,” Carr wrote, “is chipping away my capacity for concentration and contemplation.” He recounted his increased difficulty reading longer works. He wrote of a highly accomplished philosophy student—indeed, a Rhodes Scholar—who didn’t read books at all but gleaned what he could from Google. That student, Carr ominously asserted, “seems more the rule than the exception.”

Carr set off an avalanche. Much read works about our ruined attention include Nir Eyal’s “Indistractable,” Johann Hari’s “Stolen Focus,” Cal Newport’s “Deep Work,” and Jenny Odell’s “How to Do Nothing.” Carr himself has a new book, “Superbloom,” about not only distraction but all the psychological harms of the Internet. We’ve suffered a “fragmentation of consciousness,” Carr writes, our world having been “rendered incomprehensible by information.”

Read one of these books and you’re unnerved. But read two more and the skeptical imp within you awakens. Haven’t critics freaked out about the brain-scrambling power of everything from pianofortes to brightly colored posters? Isn’t there, in fact, a long section in Plato’s Phaedrus in which Socrates argues that writing will wreck people’s memories?…(More)”.

To Bot or Not to Bot? How AI Companions Are Reshaping Human Services and Connection

Curated on Posted on by Stefaan Verhulst

Essay by Julia Freeland Fisher: “Last year, a Harvard study on chatbots drew a startling conclusion: AI companions significantly reduce loneliness. The researchers found that “synthetic conversation partners,” or bots engineered to be caring and friendly, curbed loneliness on par with interacting with a fellow human. The study was silent, however, on the irony behind these findings: synthetic interaction is not a real, lasting connection. Should the price of curing loneliness really be more isolation?

Missing that subtext is emblematic of our times. Near-term upsides often overshadow long-term consequences. Even with important lessons learned about the harms of social media and big tech over the past two decades, today, optimism about AI’s potential is soaring, at least in some circles.

Bots present an especially tempting fix to long-standing capacity constraints across education, health care, and other social services. AI coaches, tutors, navigators, caseworkers, and assistants could overcome the very real challenges—like cost, recruitment, training, and retention—that have made access to vital forms of high-quality human support perennially hard to scale.

But scaling bots that simulate human support presents new risks. What happens if, across a wide range of “human” services, we trade access to more services for fewer human connections?…(More)”.

Overcoming challenges associated with broad sharing of human genomic data

Curated on Posted on by Stefaan Verhulst

Paper by Jonathan E. LoTempio Jr & Jonathan D. Moreno: “Since the Human Genome Project, the consensus position in genomics has been that data should be shared widely to achieve the greatest societal benefit. This position relies on imprecise definitions of the concept of ‘broad data sharing’. Accordingly, the implementation of data sharing varies among landmark genomic studies. In this Perspective, we identify definitions of broad that have been used interchangeably, despite their distinct implications. We further offer a framework with clarified concepts for genomic data sharing and probe six examples in genomics that produced public data. Finally, we articulate three challenges. First, we explore the need to reinterpret the limits of general research use data. Second, we consider the governance of public data deposition from extant samples. Third, we ask whether, in light of changing concepts of broad, participants should be encouraged to share their status as participants publicly or not. Each of these challenges is followed with recommendations…(More)”.