Democracy and citizenship continue to evolve, spurred by new threats and new opportunities. In order to exert some control over these changes, we need to understand the nature of the threats and how they developed, the shifts in how people are thinking about politics and community, and the democracy innovators and innovations that are emerging today. This series of essays, to be released weekly in advance of The Future of Citizenship: The 2023 Annual Conference on Citizenship, will help set the stage for a national discussion on where our country is headed.
By Matt Leighninger and Quixada Moore-Vissing
Although Ronald Pressley had been coming to the same Massachusetts emergency room for years, it wasn’t until 2018, when his hospital started using an electronic data sharing system, that he got the health care that changed his life. Pressley was a former substance user who suffered from serious health conditions, including lung disease, back problems from a car accident, and severe anxiety. He was homeless and had trouble keeping up with his medication. Pressley had visited the emergency room (ER) a dozen times in the past year, often when his medicine had run out. Given the fast pace of ER care, doctors usually treated Pressley without knowing his full health history.
This time, a care coordinator in the hospital named Kim Lilley was able to help Pressley move from crisis to stability. Lilley was able to access his full health records, and she realized that the ER doctors hadn’t had the time to give Pressley sustained, chronic care around behavioral health. Plus, because of Pressley’s lack of a fixed address, Medicaid had cut his care, and his blood pressure spiked after he went off his medication. Lilley was able to intervene with court officials to qualify Pressley for disability benefits. She also was able to shift him from being a “frequent flyer” at the ER into primary care appointments, to meet regularly with a PCP doctor and lung specialist. Pressley is now taking medication for his physical and mental health, has moved into an apartment, and is volunteering at a soup kitchen.
Pressley’s case illustrates the potential of data sharing to improve health care. The use of machine learning to discern patterns in this data can help researchers and doctors prevent disease, epidemics, and life-threatening illnesses. Peter Eckart of the Illinois Public Health Institute argues that the benefits could extend far further if the data and analysis extends to “social determinants” of health, such as Pressley’s lack of housing. “If we can track and understand social determinants,” he says, “we can reduce the rates of things like congestive heart failure.”
But though it worked out for Pressley, others may not want their entire health histories to be shared with health care providers when they walk into the hospital. By making our data available, we may also be allowing corporations, researchers, and the government to peer into our bodies and minds, accessing the very foundations that make us who we are – like our DNA and genetic histories. Collectively, our health may depend on how we balance the dangers and benefits of health data, and whether citizens, governments, and corporations can negotiate mutually satisfactory agreements on privacy, profits, and data collection.
Wanted: An unending supply of fresh, real-time data
Electronic shared data systems come with many opportunities, including a chance to identify and treat conditions sooner and streamline health care services. It can help us to better understand and respond to epidemics, such as Ebola. In Africa, scientists have used mobile phone location data to track population movements, so that they can make predictions about how the disease will spread in a given area and establish treatment centers in the most vulnerable places.
Data sharing arrangements between pharmaceutical companies have also produced breakthroughs in how drugs can be used to treat various illness; for instance, pharmaceutical companies discovered that desipramine, a drug often used to treat depression, also has the potential to cure types of lung cancer. However, once consumer data is sold to third parties, the ways that these companies use our individual data is largely unknown to us.
As personalized private genetic testing has gained popularity through companies like Ancestry.com and 23andme, some citizens have been able to identify the causes behind difficult-to-diagnose medical conditions and get the treatment they need. CBS recently shared the story of 12-year-old Becca Salberg and her mother Lisa. Lisa has a genetic heart condition called hypertropic cardiomyopathy that already killed four people in her family. Lisa worked with doctors to get Becca tested for the gene. Upon discovering that Becca also had the gene for hypertropic cardiomyopathy, they were able to seek the preventative treatment she needed.
One asset that is only beginning to be tapped is the health data that is collected and held by governments. Public agencies that deal with housing, public safety, education, and other issues have data that can help researchers understand how social determinants affect health. “We’ve made most of our investments in clinical care, even though that is only a small piece of the health puzzle,” says Eckart. “What we should be doing is investing in the usability and interoperability of public agency data.”
In Eckart’s view, tapping into public data would allow us to address health inequities more directly; it would also, he thinks, raise new questions about why inequities exist. “You can’t talk about health equity without talking about racism, sexism, classism – if you believe that health is socially determined, then does our work address social determinants as drivers or as indicators? Can we go all the way upstream, and reduce the impact of racism, gender discrimination, class oppression on our health? I don’t think we have a roadmap for that.”
In all these ways, health data can be life-saving – and of course it is also profitable for the health care industry, which can use data to develop products and market new types of care. The key to both the benefits and the profits is being able to access huge amounts of data, gathered around the clock. “We assume that Google and Meta already know everything about us, but what they have is only a static snapshot,” says Darrell West of the Brookings Institution. “To reach its potential, AI requires an unending supply of real-time, fresh data.”
There are a multitude of ways for individuals to collect and share their personal data, from genetic tests to all the data yielded by Fitbits and other personal devices. Currently, most people collect data for their own personal use – to monitor their fitness, for example. However, some health studies use an approach called “participatory action research,” in which individuals actively collect data, from their own blood pressure to local air quality, to contribute to the study. If they felt comfortable doing so, citizens could dramatically increase the volume of data.
Privacy kills projects
That’s important because there are few formal agreements between citizens and institutions about how the health care system should balance benefits of accessing patient data with individuals’ rights to privacy. And as health care providers become increasingly reliant on and comfortable with patients’ personal health data, this may also open up unprecedented avenues for bias and discrimination. For instance, Lilley was able to glean from Pressley’s background that he is a former drug user and dealer, and that he also had an old gunshot wound. As medical professionals know more about patients’ personal lives, it is possible that their own biases may influence how they provide treatment. Further, vulnerable populations – the mentally ill, those using substances, those living in poverty, formerly incarcerated people – may not realize how their personal data is being used to shape their health care. Meanwhile, access to this data may allow health care providers to focus on insured or wealthy individuals, and steer services toward those who need high-profit medications.
Genetic testing also creates complications. Personalized genetic testing companies like 23andme are not subject to Health Insurance Portability and Accountability (HIPAA) laws that safeguard patient privacy. Although current laws protect against use of genetic information for health insurance or jobs, they don’t protect against use of such data for life insurance or long-term care coverage.
Further, some experts argue that even if a genetic testing company de-identifies their data with the use of other databases, third parties may be able to cross reference data and re-identify individuals. Law enforcement used data from such a company to apprehend the Golden State Killer, a serial murderer who had been at large for three decades. However, since personalized genetic testing is a largely unregulated industry, there are currently few restrictions that protect consumers or inform them about the risks of sharing genetic information. As it turns out, even though Ancestry.com has current policies in place that protect against selling individual consumer data to insurers, employers, health providers or third-party marketers, the same user’s agreement stipulates that they may modify the privacy statement at any time.
At the same time, increased regulation over data sharing may become problematic for researchers and government agencies trying to collect and analyze health data, says David Lazer of Northeastern University. “Privacy kills projects, or slows them down – it is a giant expensive morass,” says Lazer. Local, state, and federal laws “have a chilling effect on data integration, partly because people don’t understand how the laws disable or enable data sharing. We need to create a consent module app that trumps any kind of law when people say ‘my data should be shared.’”
This new frontier of health care data and genetic testing poses critical questions about pros and cons. For instance, the New Haven school district and Yale University are working to design an educational program for dyslexia that is informed by studying students’ genes. Four hundred fifty New Haven students with low literacy scores are given four years of two reading programs, and at the end of the study, students spit into a test tube and researchers examine differences in the genome between students who responded well to the reading programs and students who continue to struggle with reading. On one hand, such research may allow scientists to better understand dyslexia and allow educators to deliver more tailored supports to students. Scientists may even be able to screen students based on their genes long before they start school to allow for earlier reading interventions. However, most students in the study are black or Latinx, and their parents may feel compelled to consent to genetic testing just to get their children access to the reading program. Without appropriate consumer education, it’s difficult to know if parents understand the full ramifications of sharing their children’s DNA.
Bargaining for our lives
At its best, the use of subconscious technologies can enable unprecedented, individualized health care that allows us to better prevent and treat health conditions and develop higher quality medical interventions and pharmaceuticals. At its worst, health care data could become a new frontier for entrepreneurs to track and monitor consumers, allow for third parties to violate citizens’ privacy rights, and reproduce bias and discrimination on an even larger scale.
Because both the public benefits and private profits in health care depend on the continual provision of huge amounts of data, citizens have a fair degree of power. If privacy provisions and uses of data are strengthened as a result of lawsuits or policy changes, health-related corporations will lose money. So, there are the terms here for a bargain between consumers and companies: the possibility of unfettered and even increased data for the right to a say in how data is used. “It is possible to strike deals on health data,” observes David Lazer of Northeastern University. “There are models for data donation that give people opportunities to consent or opt out.” To Allison Fine, author of Momentum, this is a daunting proposition. “This kind of bargain will require a level of engagement we haven’t seen yet,” she says. “It will take a willingness to engage that citizens, corporations, and governments just haven’t shown so far.”
This essay is adapted from Rewiring Democracy, a publication of Public Agenda.