Selected Readings on the Intersection of Data, Abortion Care, and Women’s Health

Curated on June 30, 2022July 1, 2022 by Uma

By: Uma Kalkar, Salwa Mansuri, Andrew J. Zahuranec

As part of an ongoing effort to contribute to current topics in data, technology, and governance, The GovLab’s Selected Readings series provides an annotated and curated collection of recommended readings on themes such as open data, data collaboration, and civic technology.

In this edition, we reflect on the intersection between data, abortion, and women’s health following the United States Supreme Court ruling regarding Dobbs v. Jackson Women’s Health Organization which held that there was no constitutional right to abortion and decided that individual states have the authority to regulate access to abortion services. In the days before and since the decision, a large amount of literature has been produced both on the implications of this ruling for individuals’ data privacy and the effects on women’s social and economic lives. It is clear that, while opinions on access to abortion services are often influenced by deeply held attitudes about women’s bodily autonomy and when life begins, data has critical importance both as a potential source of risk and as a tool to understand the decision’s impact.

Below we curate some stories from news sources and academic papers on the role of data in abortion services as well as data-driven research by institutions into the effects of abortion. We hope this selection of readings provides a broader perspective on how data and women’s rights and health intersect.

As well, we urge that anyone seeking further information about abortion access visit www.ineedana.com via a secure site, and preferably via a VPN. For those looking for menstrual apps, Spot On by the Planned Parenthood Federation of America saves data locally on phones, does not provide information to third parties, and allows for anonymous accounts.

The readings are presented in alphabetical order.

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Data & Privacy Concerns

Conti-Cook, Cynthia. “Surveilling the Digital Abortion Diary: A Preview of How Anti-Abortion Prosecutors Will Weaponize Commonly-Used Digital Devices As Criminal Evidence Against Pregnant People and Abortion Providers in a Post-Roe America.” University of Baltimore Law Review, forthcoming. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3666305

In this four-part article, Conti-Cook discusses the history of health data rights and the long-standing ways in which digital evidence produced by pregnant people has been used to prosecute their actions. She discusses how digital technologies help prosecutors lay charges against those seeking abortions and how they help “ the state see[k] control over [them] by virtue of their pregnancy status” by digitally surveilling them.
The author examines how “digital, biometric, and genetic surveillance” serves as a vehicle to “microtarget” historically oppressed communities” under a patriarchal and racist social structure.
She also discusses how online searches relating to pregnancy termination and abortion, location and tracking data, site history, wearable devices, and app data can be factored into risk assessment tools to assess social service outcomes and federal prosecutions.
Conti-Cook ends by reviewing digital hygiene strategies to stop the use of personal data against oneself and foster a more critical use of digital tools for reproductive and pregnancy-related health needs.

Diamant, Jeff, and Besheer Mohamed. “What the Data Says about Abortion in the U.S.” Pew Research Center, June 24, 2022. https://www.pewresearch.org/fact-tank/2022/06/24/what-the-data-says-about-abortion-in-the-u-s-2

In the aftermath of the overturn of Roe v. Wade (1973), the Pew Research Center published a compilation of facts and statistics about abortion care in the United States obtained through the Centers for Disease Control and Prevention and Guttmacher Institute.
The piece describes shifting trends pertaining to the number of legal abortions conducted each year in the United States since the 1970s, the abortion rate among women, the most common types of abortions, and the number of abortion providers over time. It describes, for example, how the procedure has generally declined at “a slow yet steady pace” since the early 1990s. It also notes that the number of providers has declined over time.

Paul, Kari. “Tech Firms under Pressure to Safeguard User Data as Abortion Prosecutions Loom.” The Guardian, June 25, 2022, sec. US news. https://www.theguardian.com/us-news/2022/jun/25/tech-companies-health-data-security-abortion-prosecution

Paul writes about the concerns of abortion and civil rights activists on how data collected about individuals through apps and online searches might incriminate those seeking or providing abortion services. It notes how geo-location data used by tech companies can make “it easy for law enforcement officials to access incriminating data on location, internet searches, and communication history.”
While period tracking apps have received significant attention, the article notes that companies such as Meta, Uber, Lyft, Google, and Apple have yet to publicly announce how they would respond to law enforcement requests on abortion evidence.
The piece finally includes a recommendation from the digital rights advocacy group Electronic Frontier Foundation that companies preemptively prepare “for a future in which they are served with subpoenas and warrants seeking user data to prosecute abortion seekers and providers.” It suggests end-to-end encryption as a default, refraining from collecting location information, and allowing anonymous or pseudonymous access to apps.

Nguyen, Nicole, and Cordilia James. “How Period-Tracker Apps Treat Your Data, and What That Means If Roe v. Wade Is Overturned.” Wall Street Journal, June 21, 2022. https://www.wsj.com/articles/how-period-tracker-apps-treat-your-data-and-what-that-means-if-roe-v-wade-is-overturned-11655561595

Nguyen and James provide an extensive analysis of the ways that period tracking apps track, collect, store, and share data about women’s fertility and menstrual cycle. Following Dobbs v. Jackson Women’s Health Organization (2022), which overturned Roe v. Wade (1973), there has been significant public concern about the (re)use of the data these apps collect.
They detail different kinds of data that could be subpoenaed from period trackers and the terminology that users can search for in an app’s privacy policy to understand how their data will be used. It describes, for example, what it means to when Terms & Conditions outline how they will “encrypt” (that is, to scramble into an incoherent string of code), “share” or “sell” (data can be given to third parties such as advertisers), and respond to “requests” (companies may notify the user when a court or government data asks for data).
The article closes with an overview of the most-downloaded fertility apps — including Flo, Apple Health, Clue, FitBit, Glow, and Natural Cycles — and where they stand on data privacy.

Sherman, Jenna. “How Abortion Misinformation and Disinformation Spread Online.” Scientific American, June 24, 2022. https://www.scientificamerican.com/article/how-abortion-misinformation-and-disinformation-spread-online/

In Scientific American, Sherman writes an opinion piece on the growth of online dis- and misinformation in the aftermath of Dobbs. She summarizes how, according to current data-driven research, much of the information people find online about abortion is not reliable and that the highest volume of online searches about abortion tends to be in those states with the most restricted access.
Despite much research on abortion, Sherman notes “a lack of access to quality information or care” online, especially for marginalized communities. She also summarizes the results of studies on social media and search engines. In one 2021 study, searches for “abortion pill” tended not to yield scientifically accurate and moderately accessible information.
Another study cited in the article found that half of the web pages surfaced by Google on abortion contained misinformation. This appears to be by design — with false information about “abortion pill reversal” and abortion practices generating large revenues for platforms like Facebook.

Data on the Impact of Abortion Access

Amador, Diego. “The Consequences of Abortion and Contraception Policies on Young Women’s Reproductive Choices, Schooling and Labor Supply.” Documento CEDE №2017–43 (2017). https://ssrn.com/abstract=2987367

Amador analyzes aggregate provider data from the Guttmacher Institute to assess the relationship between contraceptive use, abortion, schooling, and labor decisions of US women. The dataset follows a sample of women born between 1980 and 1984, with data from interviews starting in 1997 and ending in 2011.
A counterfactual model based on the data suggests that a perfectly enforced ban on abortions would raise the rate of standard contraceptive use for women 9.1%. The fraction of children born to single mothers would increase from 30% to 34% while the average amount of schooling after high school would decrease by 3.1%. The number of women with college degrees would drop by 1.8% age points. The estimated average loss in lifetime earnings for women who would have at least had one abortion was estimated at USD 39,172.
The author also assesses the impact that free contraception would have, suggesting a 15.7 decrease in pregnancies per 1000 women and an 11.6 reduction in abortions per 1000 women. Accumulated schooling after high school increased by an estimated 3%. An assessment of mandatory counseling laws found that the long-run effect of these laws on women ages 18 to 30 was a 10% decrease in abortion rates.
The author concludes that policies such as an abortion ban and free contraception have important effects on schooling and lifetime earnings but only a moderate impact on labor supply.

ANSIRH. “Introduction to the Turnaway Study.” ANSIRH, March 2020. https://www.ansirh.org/sites/default/files/publications/files/turnawaystudyannotatedbibliography.pdf

This fact sheet summarizes various analyses stemming from the Turnaway Study, the first study to rigorously examine the effects of receiving abortion services versus being denied access to them. The study is an initiative by Advancing New Standards in Reproductive Health (ANSIRH), a program within the UCSF Bixby Center for Global Reproductive Health. It examines 1,000 women seeking abortion from 30 facilities around the country, with interviews conducted over five years.
Studies conducted with the dataset find that the most common reason for women to seek an abortion was not being able to afford a child and/or not having a suitable partner/parent involved to assist with childrearing. Most women don’t feel pressured by counseling that occurs in clinics but find it less helpful when it is state-mandated. Half of all women report seeing anti-abortion protestors at clinics and greater contact with them tends to be more upsetting.
Studies also suggest no evidence that abortion causes negative mental health outcomes, although being denied an abortion is associated with elevated anxiety and stress and lower self-esteem. Those who receive an abortion experience “a mix of positive and negative emotions in the days after […] with relief predominating.” The intensity of the emotion diminishes over time but over 95% of women report “abortion was the right decision for them at all times over five years after.”
Carrying an unwanted pregnancy tended to be associated with worse outcomes for women’s physical health and socioeconomic status. Women denied abortion who later gave birth reported more chronic pain and rated their overall health as worse. Economic insecurity for women and their families increased almost four-fold. In terms of education, women who received abortions tended to have higher odds of having positive one-year plans while women denied abortions were no more or less likely to drop out of school.

Donohue, John J., and Steven D. Levitt. “The Impact of Legalized Abortion on Crime Over the Last Two Decades.” The University of Chicago, Becker Friedman Institute for Economics Working Paper №2019–75 (May 2017). https://ssrn.com/abstract=3391510

This paper primarily argues that legalizing abortion in the 1970s had positive consequences in the significant reduction of crime even two decades later, in the 1990s. In particular, the paper suggested an approximate 20% decrease in crime rates between 1997 and 2014. Not only is abortion legalization a crucial factor but perhaps one of the most crucial ones in the significant reduction in crime rates (see Donohue and Levitt, 2001).
A particularly crucial aspect of the data collected was that it took close to a decade for the “number of abortions performed to reach a steady-state” attributed to the variability and heterogeneity of state-level data due to the variability and dynamic nature of evolving abortion legislation and abortion reform.
Moreover, the effect of abortion on crime rates was only incrementally visible as “crime-aged cohorts” were gradually exposed to legalized abortion. Donohue and Levitt’s work supports the abortion-crime hypothesis — that increased access to abortion would decrease crime.

Frost, Jennifer J., Jennifer Mueller, and Zoe H. Pleasure. “Trends and Differentials in Receipt of Sexual and Reproductive Health Services in the United States: Services Received and Sources of Care, 2006–2019.” The Guttmacher Institute, June 24, 2021. https://doi.org/10.1363/2021.33017

This report describes trends in reproductive and sexual health care across the United States over a 13-year period as told by the National Survey of Family Growth, the only national data source that contains detailed information on sexual and reproductive health. It finds that some 7 in 10 women of reproductive age (44 million people) make at least one medical visit for sexual and reproductive health care each year. However, disparities exist — Hispanic women are less likely to receive care than White women, and the uninsured are substantially less likely to receive care than privately insured women.
It further finds that publicly funded clinics were a critical source of care for young women, lower-income women, women of color, foreign-born women, women on Medicaid, and women without insurance.
The report also finds that the Affordable Care Act increased the number of women receiving contraceptive services by 8% among women with private providers. There was a complimentary drop among women receiving contraceptive care from publicly funded clinics.

Hill, J. Jackson IV. “The Need for a National Abortion Reporting Requirement: Why Both Sides Should Be in Support of Better Data.” Available at SSRN (May 2, 2014). https://ssrn.com/abstract=2306667.

Hill writes a paper urging organizations to improve the status of abortion reporting in the United States. Examining statistics collected by the Centers for Disease Control and the Guttmacher Institute, the author finds serious deficiencies, including a lack of voluntary reporting from states, conflicting requirements (or unenforced requirements) about what data is collected, and an absence of timely data.
After the passage of Roe, state legislatures attempted to mandate abortion reporting and monitoring; however, concerns over the safety of women’s choice, undue administrative hurdles, and issues over pervasive data collection made it difficult to impose a standardized, non-intrusive, and anonymized data collection practice.
Hill argues that these data gaps and paternalistic methods of collecting data have had consequences on the ability of policymakers to make decisions around abortion policy and undermine the public’s knowledge on the issue. He assesses the feasibility of federally regulated abortion data and potential other strategies for achieving reliable, uniform data. He proposes two avenues for a “comprehensive, uniform abortion data” set: a ‘command’ option that requires states to provide and collect abortion information for a federal database or a ‘bribe’ option that monetarily incentivizes states to provide this information.

Knowles Myers, Caitlin, and Morgan Welch. “What Can Economic Research Tell Us about the Effect of Abortion Access on Women’s Lives?” Brookings, November 30, 2021. https://www.brookings.edu/research/what-can-economic-research-tell-us-about-the-effect-of-abortion-access-on-womens-lives/

Knowles Myers and Welch write on what current economic research suggests about abortion access on women’s reproductive, social, and economic outcomes.
Comparing Alaska, California, Hawaii, New York, Washington, and the District of Columbia (states which repealed abortion bans prior to Roe) to other states, research suggests states that repealed abortion bans had between a 4–11% decline in births relative to the rest of the country — with effects particularly large for teens and women of color. Studies also suggest that abortion legalization reduced the number of teen mothers by 34% and reduced maternal mortality by 30–40%, with little impact on white women.
Additional studies indicate that abortion access has a large impact on the circumstances under which children are born. Various studies find that abortion legalization reduced the number of unwanted children, cases of neglect and abuse, and the number of children living in poverty. It also improved long-term outcomes by increasing the likelihood of child attendance in college.
Other studies find that abortion and pregnancy have substantial impact on women’s economic and social lives, with pregnancy frequently lowering women’s wages. This fact has substantial implications for “low-income mothers experiencing disruptive life events.” Based on various studies, the authors argue that “access to abortion could be pivotal to these women’s financial lives.”
While abortion is driven by views on women’s bodily autonomy and when life begins, the authors find a clear causal link between access to abortion and “whether, when, and under what circumstances women become mothers.” All studies suggest that access to abortion can have substantial implications on education, earnings, careers, and life outcomes. Restricting or eliminating access would diminish women’s personal and economic lives along with that of their families.

Maxmen, Amy. “Why Hundreds of Scientists Are Weighing in on a High-Stakes US Abortion Case.” Nature 599, no. 7884 (October 26, 2021): 187–89. https://doi.org/10.1038/d41586-021-02834-7

A piece by Amy Maxmen for Nature summarizes a recent amicus brief filed by more than 800 scientists and several scientific organizations providing data-driven research into how abortion access is an important aspect of reproductive health.
It notes, for example, more than 40 studies suggesting that receiving an abortion does not harm a woman’s mental or physical health but that being denied an abortion can result in negative financial and health outcomes. It also cites a 2019 study of nearly 900 women who “who sought but were unable to get abortions reported higher rates of chronic headaches and joint pain five years later, compared with those who got an abortion,” while a similar 2017 study finds no similar physical or psychological effects.
A separate amicus brief submitted to the Court by about 550 public health and reproductive health researchers described how unwanted pregnancies can result in worse health outcomes. It also can disproportionately harm the physical, mental, and economic well-being of Black people according to a separate study.
An additional amicus brief filed by economists notes several studies that found that “abortion legalization in the 1970s helped to increase women’s educational attainment, participation in the labor force and earnings — especially for single Black women.”

Myers, Caitlin, and Ladd, Daniel. “Did parental involvement laws grow teeth? The effects of state restrictions on minors’ access to abortion.” Journal of Health Economics, 71, (2020): p.102302. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3029823

A paper by Caitlin Knowles Myers of Germany’s IZA Institute of Labor Economics and Daniel Ladd of the University of California, Irvine compiles data on the location of abortion providers and enforcement of parental involvement laws. The researchers seek to assess the impact of laws requiring parental approval for an abortion have on minors seeking abortions.
The paper concludes that parental involvement laws may have contributed to a modest decline in teen births (a 1.4% reduction) during the 1980s and 1990s but a 2.8% increase from 1993 to 2014 in women aged 15 to 18.
It further finds that laws with an avoidance distance (the distance minors have to travel to avoid parental involvement and can seek an abortion confidentially) have significant effects. In the 1980s, a parental involvement law with an avoidance distance of 100 miles decreased teen births by 1.48%. A parental involvement law with a 400-mile avoidance distance, about a day’s drive, increases the teen birth rate by 4.3%.

Popinchalk, Anna, Cynthia Beavin, and Jonathan Bearak. “The State of Global Abortion Data: An Overview and Call to Action.” BMJ Sexual & Reproductive Health 48, no. 1 (January 1, 2022): 3–6. https://doi.org/10.1136/bmjsrh-2021-201109.

Popinchalf and colleagues at the Guttmacher Institute write in the journal BMJ Sexual & Reproductive Health on the urgent need for data on abortion incidents and access to examine disparities in people’s ability to safely terminate a pregnancy.
The authors note that the three sources of data on abortion are official statistics, surveys of women, and scientific studies. However, stigmatization and varying legal access undermine the quality of this data and can lead to substantial under-reporting. Even in high-income countries, there can be significant variation in the frequency with which data is published. This variation in quality and availability exacerbates inequities by limiting the number of experiences that can be studied.
The authors argue that data availability and quality of abortion care can be improved by investing in country-level surveys and scientific studies. It also argues for reducing stigma through community and provider messaging as it can hinder the accuracy and completeness of datasets.

Tierney, Katherine I. “Abortion Underreporting in Add Health: Findings and Implications.” Population Research and Policy Review 38, no. 3 (June 1, 2019): 417–28. https://doi.org/10.1007/s11113-019-09511-8

Tierney notes that there is substantial evidence that abortion is significantly underreported in the United States, especially among Black women and those in lower socioeconomic classes.
She supplements this review with her own evaluation of the abortion data in the National Longitudinal Study of Adolescent to Adult Health (Add Health), finding that the dataset captures only 35% of expected abortions. Examining data from 1994–1995, 1996, 2001–2002, and 2008–2009, she found severe abortion underreporting; however, there were no significant differences between race/ethnicity, age, or time of abortion and underreporting.
Tierney argues that this fact means that Add Health is no better than other surveys in collecting abortion data. She also argues that this underreporting, likely caused by stigma, has substantial implications for research and that researchers should be cautious with self-reports of abortion. Figures need to be evaluated, contextualized, and used with caution.

How football shirts chart the rise and fall of tech giants

Curated on June 29, 2022June 30, 2022 by Stefaan Verhulst

Article by Ravi Hiranand and Leo Schwartz: “It’s the ultimate status symbol, a level of exposure achieved by few companies — but one available to any company that’s willing and able to pay a hefty price. It’s an honor that costs millions of dollars, and in return, your company’s logo is on the TV screens of millions of people every week.

Sponsoring a football club — proper football, that is — is more than just a business transaction. It’s about using the world’s most watched sport to promote your brand. Getting your company’s logo on the shirt of a team like Liverpool or Real Madrid means tying your brand to a global icon. And for decades, it’s been a route taken by emerging tech companies, flush with cash to burn and a name to earn.

But these sponsorships actually reveal something about the tech industry as a whole: when you trace the history of these commercial deals across the decades, patterns emerge. Rather than individual companies, entire sectors of the industry — from cars to consumer tech to gambling websites — seem to jump into the sport at once, signaling their rise to, or the desire to, dominate global markets where football is also part of everyday life. It’s no coincidence, for example, that mobile phone companies turned to sponsoring football clubs during the beginning of the new millenium: with handsets becoming increasingly common and 3G just around the corner, companies like Samsung and Vodafone wasted no time in paying record amounts to some of the most successful clubs in England.

Rest of World took a look at some of the more memorable shirt sponsorship deals in football — from Sony’s affiliation with Italy’s champions to Rakuten’s deal with a Spanish giant — and what they say about the rise and fall of the tech sectors those companies represented…(More)”.

Better Data Sharing for Benefits Delivery

Curated on June 29, 2022June 29, 2022 by Stefaan Verhulst

Article by Chris Sadler and Claire Park: “Robust federal assistance programs and social services are essential to a thriving society. This is especially the case as people continue to contend with the fallout from the COVID-19 pandemic, which jeopardized livelihoods and put millions out of employment. Government benefits at the federal, state, and local level help people across the country pay for food, housing, health care, and other basic living expenses. But more work is required at the federal level to ensure that these benefits reach everyone in need. For instance, the historic $1.2 trillion Infrastructure Investment and Jobs Act signed into law last year included a $14.2 billion program called the Affordable Connectivity Program (ACP) to help qualifying low-income households pay for internet service. While the program is off to a strong start, improved data sharing between federal agencies, state and local governments, and institutions can leverage existing data from other benefits programs to streamline eligibility processes and ensure those who qualify receive the benefit. Expanding data sharing for benefits eligibility also aligns with one of the goals in the recent executive order to advance racial equity.

We discuss how data sharing could be improved, as well as other steps that the federal government can take to maximize the impact of this benefit on the digital divide. The solutions outlined here can be applied to both current and future programs that help people find housing, prepare children for school, and ensure everyone has enough to eat…(More)”.

What Happened to Consensus Reality?

Curated on June 28, 2022June 30, 2022 by Stefaan Verhulst

Essay by Jon Askonas: “Do you feel that people you love and respect are going insane? That formerly serious thinkers or commentators are increasingly unhinged, willing to subscribe to wild speculations or even conspiracy theories? Do you feel that, even if there’s some blame to go around, it’s the people on the other side of the aisle who have truly lost their minds? Do you wonder how they can possibly be so blind? Do you feel bewildered by how absurd everything has gotten? Do many of your compatriots seem in some sense unintelligible to you? Do you still consider them your compatriots?

If you feel this way, you are not alone.

We have come a long way from the optimism of the 1990s and 2000s about how the Internet would usher in a new golden era, expanding the domain of the information society to the whole world, with democracy sure to follow. Now we hear that the Internet foments misinformation and erodes democracy. Yet as dire as these warnings are, they are usually followed with suggestions that with more scrutiny on tech CEOs, more aggressive content moderation, and more fact-checking, Americans might yet return to accepting the same model of reality. Last year, a New York Times article titled “How the Biden Administration Can Help Solve Our Reality Crisis” suggested creating a federal “reality czar.”

This is a fantasy. The breakup of consensus reality — a shared sense of facts, expectations, and concepts about the world — predates the rise of social media and is driven by much deeper economic and technological currents.

Postwar Americans enjoyed a world where the existence of an objective, knowable reality just seemed like common sense, where alternate facts belonged only to fringe realms of the deluded or deluding. But a shared sense of reality is not natural. It is the product of social institutions that were once so powerful they could hold together a shared picture of the world, but are now well along a path of decline. In the hope of maintaining their power, some have even begun to abandon the project of objectivity altogether.

Attempts to restore consensus reality by force — the current implicit project of the establishment — are doomed to failure. The only question now is how we will adapt our institutions to a life together where a shared picture of the world has been shattered.

This series aims to trace the forces that broke consensus reality. More than a history of the rise and fall of facts, these essays attempt to show a technological reordering of social reality unlike any before encountered, and an accompanying civilizational shift not seen in five hundred years…(More)”.

The modern malaise of innovation: overwhelm, complexity, and herding cats

Curated on June 28, 2022June 30, 2022 by Stefaan Verhulst

Blog by Lucy Mason: “But the modern world is too complicated to innovate alone. Coming up with the idea is the easy bit: developing and implementing it inevitably involves navigating complex and choppy waters: multiple people, funding routes, personal agendas, legal complexity, and strategic fuzziness. All too often, great ideas fail to become reality not because the idea wouldn’t work, but because everything in the ecosystem seems (accidentally) designed to prevent it from working.

Given that innovation is a key Government priority, and so many organisations and people are dedicated to make it happen (such as Innovate UK), this lack of success seems odd. The problem does not lie with the R&D base: despite relative underinvestment by the UK Government the UK punches well above its weight in world-leading R&D. Being an entrepreneur is of course, hard work, high risk and prone to failure even for the most dedicated individuals. But are there particular features which inhibit how innovation is developed, scaled, implemented, and adopted in the UK? I would argue there are three key factors at play: overwhelm (too much), complexity (too vague), and ‘herding cats’ (too hard)…(More)”.

Unleashing the power of big data to guide precision medicine in China

Curated on June 28, 2022June 30, 2022 by Stefaan Verhulst

Article by Yvaine Ye in Nature: “Precision medicine in China was given a boost in 2016 when the government included the field in its 13th five-year economic plan. The policy blueprint, which defined the country’s spending priorities until 2020, pledged to “spur innovation and industrial application” in precision medicine alongside other areas such as smart vehicles and new materials.

Precision medicine is part of the Healthy China 2030 plan, also launched in 2016. The idea is to use the approach to tackle some major health-care challenges the country faces, such as rising cancer rates and issues related to an ageing population. Current projections suggest that, by 2040, 28% of China’s population will be over 60 years old.

Following the announcement of the five-year plan, China’s Ministry of Science and Technology (MOST) launched a precision-medicine project as part of its National Key Research and Development Program. MOST has invested about 1.3 billion yuan (US$200.4 million) in more than 100 projects from 2016 to 2018. These range from finding new drug targets for chronic diseases such as diabetes to developing better sequencing technologies and building a dozen large population cohorts comprising hundreds of thousands of people from across China.

China’s population of 1.4 billion people means the country has great potential for using big data to study health issues, says Zhengming Chen, an epidemiologist and chronic-disease researcher at the University of Oxford, UK. “The advantage is especially prominent in the research of rare diseases, where you might not be able to have a data set in smaller countries like the United Kingdom, where only a handful of cases exist,” says Chen, who leads the China Kadoorie Biobank, a chronic-disease initiative that launched in 2004. It recruited more than 510,000 adults from 10 regions across China in its first 4 years, collecting data through questionnaires and by recording physical measurements and storing participants’ blood samples for future study. So far, the team has investigated whether some disease-related lifestyle factors that have been identified in the West apply to the Chinese population. They have just begun to dig into participants’ genetic data, says Chen.

Another big-data precision-medicine project launched in 2021, after Huijun Yuan, a physician who has been researching hereditary hearing loss for more than two decades, founded the Institute of Rare Diseases at West China Hospital in Chengdu, Sichuan province, in 2020. By 2025, the institute plans to set up a database of 100,000 people from China who have rare conditions, including spinal muscular atrophy and albinism. It will contain basic health information and data relating to biological samples, such as blood for gene sequencing. Rare diseases are hard to diagnose, because their incidences are low. But the development of technologies such as genetic testing and artificial intelligence driven by big data is providing a fresh approach to diagnosing these rare conditions, and could pave the way for therapies…(More)”.

A New Model for Saving Lives on Roads Around the World

Curated on June 27, 2022June 30, 2022 by Stefaan Verhulst

Article by Krishen Mehta & Piyush Tewari: “…In 2016, SaveLIFE Foundation (SLF), an Indian non-profit organization, introduced the Zero Fatality Corridor (ZFC) solution, which has, since its inception, delivered an unprecedented reduction in road crash fatalities on the stretches of road where it has been deployed. The ZFC solution has adapted and added to the Safe System Approach, traditionally a western concept, to make it suitable for Indian conditions and requirements.

The Safe System Approach recognizes that people are fallible and can make mistakes that may be fatal for them or their fellow road-users—irrespective of how well they are trained.

The ZFC model, in turn, is an innovation designed specifically to accommodate the realities, resources, and existing infrastructure in low- and middle-income countries, which are vastly different from their developed counterparts. For example, unlike developed nations, people in low- and middle-income countries often live closer to the highways, and use them on a daily basis on foot or through traditional and slower modes of transportation. This gives rise to high crash conflict areas.

Some of the practices that are a part of the ZFC solution include optimized placement of ambulances at high-fatality locations, the utilization of drones to identify parked vehicles to preemptively prevent rear-end collisions, and road engineering solutions unique to the realities of countries like India. The ZFC model has helped create a secure environment specific to such countries with safer roads, safer vehicles, safer speeds, safer drivers, and rapid post-crash response.

The ZFC model was first deployed in 2016 on the Mumbai-Pune Expressway (MPEW) in Maharashtra, through a collaboration between SLF, Maharashtra State Road Development Corporation (MSRDC), and automaker Mahindra & Mahindra. From 2010 to 2016, the 95-kilometer stretch witnessed 2,579 crashes and 887 fatalities, making it one of India’s deadliest roads…(More)”.

How Covid Tracking Apps Are Pivoting for Commercial Profit

Curated on June 27, 2022June 30, 2022 by Stefaan Verhulst

Article by Matt Reynolds and Morgan Meaker: “…At its peak, 2.4 million people tracked their symptoms using the Covid Symptom Tracker. It was one of three surveillance studies the UK government used to track and respond to new outbreaks. Data from the tracker led to the UK government adding loss of smell and taste to the official list of Covid-19 symptoms. Between August 2020 and March 2022, the app was funded with £5.1 million ($6.2 million) from the Department of Health and Social Care.

But in early May 2022, Zoe announced in an email to users that its Covid tracking app would no longer be just a place for people to report their Covid symptoms. The Covid Symptom Tracker was becoming the Zoe Health Study, which asks people to take 10 seconds a day to log their mental and physical health beyond Covid. People who agree to take part in this wider study are asked to establish their baseline health—reporting everything from hair loss to mouth ulcers—as well as providing daily health updates. The company says this data will be used to “fight the most important health issues of our time,” but that it might also be used to develop commercial health, nutrition, and lifestyle products. (Zoe also sells nutrition tests and subscriptions to a personalized nutrition platform.)

Zoe isn’t the only Covid app developer pivoting away from the pandemic. In Berlin, a contact-tracing app called Luca is reinventing itself as a payment system, while in northern Italy an app set up to track coronavirus cases now warns citizens about natural disasters. With the most urgent phase of the pandemic now over, developers are looking for ways to squeeze more value out of the users who have downloaded their apps. The great Covid-19 data pivot is well and truly underway…(More)”.

Public Health Struggles to Get Rid of Its Data Silos

Curated on June 27, 2022June 30, 2022 by Stefaan Verhulst

Article by Carl Smith: “…In September 2019, before the first COVID-19 case was reported in the U.S., the Council of State and Territorial Epidemiologists (CSTE) published a report calling for a “public health data superhighway” capable of detecting health challenges and informing the response to them.

The technology to accomplish this already exists, CSTE noted. But even so, “public health departments struggle to take advantage of these advancements and continue to rely on sluggish, manual processes like paper records, phone calls, spreadsheets, and faxes requiring manual data entry.”

The limitations of this data ecosystem became a considerable liability when public health officials ran up against a virus that had never been seen before, working to both understand and control it at the same time. “There were mixed messages, and the pandemic made us look like our data was not adequate to the task,” says Gail C. Christopher, executive director of the National Collaborative for Health Equity.

This provided an opening for political or social actors to push anti-public health campaigns that continue to fuel public distrust of public health leaders, workers and guidelines. Reliable and timely data could help heal some of the harm that has been done, says Christopher.

“I think every health department has aspects of a complete data system,” says Brian Castrucci, president and CEO of the DeBeaumont Foundation, which funded the CSTE report. “But we need to articulate what a complete data system looks like — right now, we don’t even know what the destination is, so it’s hard to tell when we’re lost.”

A Data Modernization Movement

Data systems improvement is one of three major topics that recur in discussions about rebuilding public health, along with workforce expansion and regaining public trust, says Michael Fraser, executive director of the Association of State and Territorial Health Officials (ASTHO). “A major finding from all the conversations that we’ve had about COVID is that data systems need to be modernized.”

In recent years, there has been considerable effort by the public health community to find ways to move away from “silo-based” or disease-based surveillance between states and the federal government to an enterprise-wide system, says Fraser. “During COVID, a lot of states had a hard time sharing data, and there are many parts of this country where people go back and forth between multiple states on any given day — it’s not just the ability for states to share data with the federal government, but for states to share amongst themselves.”

The CDC’s Data Modernization Initiative, launched in 2020, is a $1.2 billion effort to address this challenge, envisioning resilient, connected systems that could “solve problems before they happen and reduce the harm caused by the problems that do happen.” The CSTE campaign “Data: Elemental to Health” is working to ensure sustained public funding for this work…(More)”.

How to get to the core of democracy

Curated on June 26, 2022June 30, 2022 by Stefaan Verhulst

Blog by Toralf Stark, Norma Osterberg-Kaufmann and Christoph Mohamad-Klotzbach: “…Many criticisms of conceptions of democracy are directed more at the institutional design than at its normative underpinnings. These include such things as the concept of representativeness. We propose focussing more on the normative foundations assessed by the different institutional frameworks than discussing the institutional frameworks themselves. We develop a new concept, which we call the ‘core principle of democracy’. By doing so, we address the conceptual and methodological puzzles theoretically and empirically. Thus, we embrace a paradigm shift.

Collecting data is ultimately meaningless if we do not find ways to assess, summarise and theorise it. Kei Nishiyama argued we must ‘shift our attention away from the concept of democracy and towards concepts of democracy’. By the term concept we, in line with Nishiyama, are following Rawls. Rawls claimed that ‘the concept of democracy refers to a single, common principle that transcends differences and on which everyone agrees’. In contrast with this, ‘ideas of democracy (…) refer to different, sometimes contested ideas based on a common concept’. This is what Laurence Whitehead calls the ‘timeless essence of democracy’….

Democracy is a latent construct and, by nature, not directly observable. Nevertheless, we are searching for indicators and empirically observable characteristics we can assign to democratic conceptions. However, by focusing only on specific patterns of institutions, only sometimes derived from theoretical considerations, we block our view of its multiple meanings. Thus, we’ve no choice but to search behind the scenes for the underlying ‘core’ principle the institutions serve.