Opportunities and challenges of using social media big data to assess mental health consequences of the COVID-19 crisis and future major events


Paper by Martin Tušl et al : “The present commentary discusses how social media big data could be used in mental health research to assess the impact of major global crises such as the COVID-19 pandemic. We first provide a brief overview of the COVID-19 situation and the challenges associated with the assessment of its global impact on mental health using conventional methods. We then propose social media big data as a possible unconventional data source, provide illustrative examples of previous studies, and discuss the advantages and challenges associated with their use for mental health research. We conclude that social media big data represent a valuable resource for mental health research, however, several methodological limitations and ethical concerns need to be addressed to ensure safe use…(More)”.

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


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.

***

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.

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


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)”.

How Covid Tracking Apps Are Pivoting for Commercial Profit


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


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)”.

AI Can Predict Potential Nutrient Deficiencies from Space


Article by Rachel Berkowitz: “Micronutrient deficiencies afflict more than two billion people worldwide, including 340 million children. This lack of vitamins and minerals can have serious health consequences. But diagnosing deficiencies early enough for effective treatment requires expensive, time-consuming blood draws and laboratory tests.

New research provides a more efficient approach. Computer scientist Elizabeth Bondi and her colleagues at Harvard University used publicly available satellite data and artificial intelligence to reliably pinpoint geographical areas where populations are at high risk of micronutrient deficiencies. This analysis could potentially pave the way for early public health interventions.

Existing AI systems can use satellite data to predict localized food security issues, but they typically rely on directly observable features. For example, agricultural productivity can be estimated from views of vegetation. Micronutrient availability is harder to calculate. After seeing research showing that areas near forests tend to have better dietary diversity, Bondi and her colleagues were inspired to identify lesser-known markers for potential malnourishment. Their work shows that combining data such as vegetation cover, weather and water presence can suggest where populations will lack iron, vitamin B12 or vitamin A.

The team examined raw satellite measurements and consulted with local public health officials, then used AI to sift through the data and pinpoint key features. For instance, a food market, inferred based on roads and buildings visible, was vital for predicting a community’s risk level. The researchers then linked these features to specific nutrients lacking in four regions’ populations across Madagascar. They used real-world biomarker data (blood samples tested in labs) to train and test their AI program….(More)”.

How Period-Tracker Apps Treat Your Data, and What That Means if Roe v. Wade Is Overturned


Article by Nicole Nguyen and Cordilia James: “You might not talk to your friends about your monthly cycle, but there’s a good chance you talk to an app about it. And why not? Period-tracking apps are more convenient than using a diary, and the insights are more interesting, too. 

But how much do you know about the ways apps and trackers collect, store—and sometimes share—your fertility and menstrual-cycle data?

The question has taken on new importance following the leak of a draft Supreme Court opinion that would overturn Roe v. Wade. Roe established a constitutional right to abortion, and should the court reverse its 1973 decision, about half the states in the U.S. are likely to restrict or outright ban the procedure.

Phone and app data have long been shared and sold without prominent disclosure, often for advertising purposes. HIPAA, aka the Health Insurance Portability and Accountability Act, might protect information shared between you and your healthcare provider, but it doesn’t typically apply to data you put into an app, even a health-related one. Flo Health Inc., maker of a popular period and ovulation tracker, settled with the Federal Trade Commission in 2021 for sharing sensitive health data with Facebook without making the practice clear to users.

The company completed an independent privacy audit earlier this year. “We remain committed to ensuring the utmost privacy for our users and want to make it clear that Flo does not share health data with any company,” a spokeswoman said.

In a scenario where Roe is overturned, your digital breadcrumbs—including the kind that come from period trackers—could be used against you in states where laws criminalize aiding in or undergoing abortion, say legal experts.

“The importance of menstrual data is not merely speculative. It has been relevant to the government before, in investigations and restrictions,” said Leah Fowler, research director at University of Houston’s Health Law and Policy Institute. She cited a 2019 hearing where Missouri’s state health department admitted to keeping a spreadsheet of Planned Parenthood abortion patients, which included the dates of their last menstrual period.

Prosecutors have also obtained other types of digital information, including text messages and search histories, as evidence for abortion-related cases…(More)”.

Smartphone apps in the COVID-19 pandemic


Paper by Jay A. Pandit, Jennifer M. Radin, Giorgio Quer & Eric J. Topol: “At the beginning of the COVID-19 pandemic, analog tools such as nasopharyngeal swabs for PCR tests were center stage and the major prevention tactics of masking and physical distancing were a throwback to the 1918 influenza pandemic. Overall, there has been scant regard for digital tools, particularly those based on smartphone apps, which is surprising given the ubiquity of smartphones across the globe. Smartphone apps, given accessibility in the time of physical distancing, were widely used for tracking, tracing and educating the public about COVID-19. Despite limitations, such as concerns around data privacy, data security, digital health illiteracy and structural inequities, there is ample evidence that apps are beneficial for understanding outbreak epidemiology, individual screening and contact tracing. While there were successes and failures in each category, outbreak epidemiology and individual screening were substantially enhanced by the reach of smartphone apps and accessory wearables. Continued use of apps within the digital infrastructure promises to provide an important tool for rigorous investigation of outcomes both in the ongoing outbreak and in future epidemics…(More)”.

Data saves lives: reshaping health and social care with data


UK Government Policy Paper: “…Up-to-date information about our health and care is critical to ensuring we can:

  • plan and commission services that provide what each local area needs and support effective integrated care systems
  • develop new diagnostics, treatments and insights from analysing information so the public have the best possible care and can improve their overall wellbeing
  • stop asking the public to repeat their information unnecessarily by having it available at the right time
  • assess the safety and quality of care to keep the public safe, both for their individual care and to improve guidance and regulations
  • better manage public health issues such as COVID-19, health and care disparities, and sexual health
  • help the public make informed decisions about their care, including choosing clinicians, such as through patient-reported outcome measures (PROMs) that assess the quality of care delivered from a patient’s perspective

When it comes to handling personal data, the NHS has become one of the most trusted organisations in the UK by using strict legal, privacy and security controls. Partly as a consequence of this track record, the National Data Guardian’s recent report Putting Good Into Practice found that participants were supportive of health and social care data being used for public benefit. This reflects previous polls, which show most respondents would trust the NHS with data about them (57% in July 2020 and 59% in February 2020).

During the pandemic, we made further strides in harnessing the power of data:

However, we cannot take the trust of the public for granted. In the summer of 2021, we made a mistake and did not do enough to explain the improvements needed to the way we collect general practice data. The reasons for these changes are to improve data quality, and improve the understanding of the health and care system so it can plan better and provide more targeted services. We also need to do this in a more cost-effective way as the current system using ad hoc collection processes is more expensive and inefficient, and has been criticised by the National Audit Office and the House of Commons Public Accounts Committee.

Not only did we insufficiently explain, we also did not listen and engage well enough. This led to confusion and anxiety, and created a perception that we were willing to press ahead regardless. This had the unfortunate consequence of leading to an increase in the rate of individuals opting out of sharing their data. Of course, individual members of the public have the right to opt out and always will. But the more people who opt out, the greater the risk that the quality of the data is compromised….

In this data strategy, which differs from the draft we published last year, we are putting public trust and confidence front and centre of the safe use and access to health and social care data. The data we talk about is not an abstract thing: there is an individual, a person, a name behind each piece of data. That demands the highest level of confidence. It is their data that we hold in trust and, in return, promise to use safely to provide high-quality care, help improve our NHS and adult social care, develop new treatments, and, as a result, save lives…(More)”

Forecasting hospital-level COVID-19 admissions using real-time mobility data


Paper by Brennan Klein et al: “For each of the COVID-19 pandemic waves, hospitals have had to plan for deploying surge capacity and resources to manage large but transient increases in COVID-19 admissions. While a lot of effort has gone into predicting regional trends in COVID-19 cases and hospitalizations, there are far fewer successful tools for creating accurate hospital-level forecasts. At the same time, anonymized phone-collected mobility data proved to correlate well with the number of cases for the first two waves of the pandemic (spring 2020, and fall-winter 2021). In this work, we show how mobility data could bolster hospital-specific COVID-19 admission forecasts for five hospitals in Massachusetts during the initial COVID-19 surge. The high predictive capability of the model was achieved by combining anonymized, aggregated mobile device data about users’ contact patterns, commuting volume, and mobility range with COVID hospitalizations and test-positivity data. We conclude that mobility-informed forecasting models can increase the lead-time of accurate predictions for individual hospitals, giving managers valuable time to strategize how best to allocate resources to manage forthcoming surges…(More)”.