Examining Civic Engagement Links to Health


Findings from the Literature and Implications for a Culture of Health by the Rand Corporation: “The Robert Wood Johnson Foundation (RWJF) is leading a pioneering effort to advance a culture of health that “enables all in our diverse society to lead healthier lives, now and for generations to come.” The RWJF Culture of Health Action Framework is divided into four Action Areas, and civic engagement (which RWJF defines broadly as participating in activities that advance the public good) is identified as one of the three drivers for the Action Area, Making Health a Shared Value, along with mindset and expectations, and sense of community. Civic engagement can serve as a mechanism for translating changes in a health-related mindset and sense of community into tangible actions that could lead to new health-promoting partnerships, improvements in community health conditions, and the degree of integration among health services and systems for better health outcomes.

The authors of this report seek a closer focus on the causal relationship between civic engagement and health and well-being — that is, whether better health and well-being might promote more civic engagement, whether civic engagement might promote health or well-being, or perhaps both.

In this report, authors conduct a structured review to understand what the scientific literature presents about the empirical relationship between health and civic engagement. The authors specifically examine whether health is a cause of civic engagement, a consequence of it, or both; what causal mechanisms underlie this link; and where there are gaps in knowledge for the field….(More)”

Real-time flu tracking. By monitoring social media, scientists can monitor outbreaks as they happen.


Charles Schmidt at Nature: “Conventional influenza surveillance describes outbreaks of flu that have already happened. It is based on reports from doctors, and produces data that take weeks to process — often leaving the health authorities to chase the virus around, rather than get on top of it.

But every day, thousands of unwell people pour details of their symptoms and, perhaps unknowingly, locations into search engines and social media, creating a trove of real-time flu data. If such data could be used to monitor flu outbreaks as they happen and to make accurate predictions about its spread, that could transform public-health surveillance.

Powerful computational tools such as machine learning and a growing diversity of data streams — not just search queries and social media, but also cloud-based electronic health records and human mobility patterns inferred from census information — are making it increasingly possible to monitor the spread of flu through the population by following its digital signal. Now, models that track flu in real time and forecast flu trends are making inroads into public-health practice.

“We’re becoming much more comfortable with how these models perform,” says Matthew Biggerstaff, an epidemiologist who works on flu preparedness at the US Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia.

In 2013–14, the CDC launched the FluSight Network, a website informed by digital modelling that predicts the timing, peak and short-term intensity of the flu season in ten regions of the United States and across the whole country. According to Biggerstaff, flu forecasting helps responders to plan ahead, so they can be ready with vaccinations and communication strategies to limit the effects of the virus. Encouraged by progress in the field, the CDC announced in January 2019 that it will spend US$17.5 million to create a network of influenza-forecasting centres of excellence, each tasked with improving the accuracy and communication of real-time forecasts.

The CDC is leading the way on digital flu surveillance, but health agencies elsewhere are following suit. “We’ve been working to develop and apply these models with collaborators using a range of data sources,” says Richard Pebody, a consultant epidemiologist at Public Health England in London. The capacity to predict flu trajectories two to three weeks in advance, Pebody says, “will be very valuable for health-service planning.”…(More)”.

The business case for integrating claims and clinical data


Claudia Williams at MedCityNews: “The path to value-based care is arduous. For health plans, their ability to manage care, assess quality, lower costs, and streamline reporting is directly impacted by access to clinical data. For providers, the same can be said due to their lack of access to claims data. 

Providers and health plans are increasingly demanding integrated claims and clinical data to drive and support value-based care programs. These organizations know that clinical and claims information from more than a single organization is the only way to get a true picture of patient care. From avoiding medication errors to enabling an evidence-based approach to treatment or identifying at-risk patients, the value of integrated claims and clinical data is immense — and will have far-reaching influence on both health outcomes and costs of care over time.

On July 30, Medicare announced the Data at the Point of Care pilot to share valuable claims data with Medicare providers in order to “fill in information gaps for clinicians, giving them a more structured and complete patient history with information like previous diagnoses, past procedures, and medication lists.” But that’s not the only example. To transition from fee-for-service to value-based care, providers and health plans have begun to partner with health data networks to access integrated clinical and claims data: 

Health plan adoption of integrated data strategy

A California health plan is partnering with one of the largest nonprofit health data networks in California, to better integrate clinical and claims data. …

Providers leveraging claims data to understand patient medication patterns 

Doctors using advanced health data networks typically see a full list of patients’ medications, derived from claims, when they treat them. With this information available, doctors can avoid dangerous drug to-drug interactions when they prescribe new medications. After a visit, they can also follow up and see if a patient actually filled a prescription and is still taking it….(More)”.

How Should Scientists’ Access To Health Databanks Be Managed?


Richard Harris at NPR: “More than a million Americans have donated genetic information and medical data for research projects. But how that information gets used varies a lot, depending on the philosophy of the organizations that have gathered the data.

Some hold the data close, while others are working to make the data as widely available to as many researchers as possible — figuring science will progress faster that way. But scientific openness can be constrained b y both practical and commercial considerations.

Three major projects in the United States illustrate these differing philosophies.

VA scientists spearhead research on veterans database

The first project involves three-quarters of a million veterans, mostly men over age 60. Every day, 400 to 500 blood samples show up in a modern lab in the basement of the Veterans Affairs hospital in Boston. Luis Selva, the center’s associate director, explains that robots extract DNA from the samples and then the genetic material is sent out for analysis….

Intermountain Healthcare teams with deCODE genetics

Our second example involves what is largely an extended family: descendants of settlers in Utah, primarily from the Church of Jesus Christ of Latter-day Saints. This year, Intermountain Healthcare in Utah announced that it was going to sequence the complete DNA of half a million of its patients, resulting in what the health system says will be the world’s largest collection of complete genomes….

NIH’s All of Us aims to diversify and democratize research

Our third and final example is an effort by the National Institutes of Health to recruit a million Americans for a long-term study of health, behavior and genetics. Its philosophy sharply contrasts with that of Intermountain Health.

“We do have a very strong goal around diversity, in making sure that the participants in the All of Us research program reflect the vast diversity of the United States,” says Stephanie Devaney, the program’s deputy director….(More)”.

Raw data won’t solve our problems — asking the right questions will


Stefaan G. Verhulst in apolitical: “If I had only one hour to save the world, I would spend fifty-five minutes defining the questions, and only five minutes finding the answers,” is a famous aphorism attributed to Albert Einstein.

Behind this quote is an important insight about human nature: Too often, we leap to answers without first pausing to examine our questions. We tout solutions without considering whether we are addressing real or relevant challenges or priorities. We advocate fixes for problems, or for aspects of society, that may not be broken at all.

This misordering of priorities is especially acute — and represents a missed opportunity — in our era of big data. Today’s data has enormous potential to solve important public challenges.

However, policymakers often fail to invest in defining the questions that matter, focusing mainly on the supply side of the data equation (“What data do we have or must have access to?”) rather than the demand side (“What is the core question and what data do we really need to answer it?” or “What data can or should we actually use to solve those problems that matter?”).

As such, data initiatives often provide marginal insights while at the same time generating unnecessary privacy risks by accessing and exploring data that may not in fact be needed at all in order to address the root of our most important societal problems.

A new science of questions

So what are the truly vexing questions that deserve attention and investment today? Toward what end should we strategically seek to leverage data and AI?

The truth is that policymakers and other stakeholders currently don’t have a good way of defining questions or identifying priorities, nor a clear framework to help us leverage the potential of data and data science toward the public good.

This is a situation we seek to remedy at The GovLab, an action research center based at New York University.

Our most recent project, the 100 Questions Initiative, seeks to begin developing a new science and practice of questions — one that identifies the most urgent questions in a participatory manner. Launched last month, the goal of this project is to develop a process that takes advantage of distributed and diverse expertise on a range of given topics or domains so as to identify and prioritize those questions that are high impact, novel and feasible.

Because we live in an age of data and much of our work focuses on the promises and perils of data, we seek to identify the 100 most pressing problems confronting the world that could be addressed by greater use of existing, often inaccessible, datasets through data collaboratives – new forms of cross-disciplinary collaboration beyond public-private partnerships focused on leveraging data for good….(More)”.

How Tulsa is Preserving Privacy and Sharing Data for Social Good


Data across Sectors for Health: “Data sharing between organizations addressing social risk factors has the potential to amplify impact by increasing direct service capacity and efficiency. Unfortunately, the risks of and restrictions on sharing personal data often limit this potential, and adherence to regulations such as HIPAA and FERPA can make data sharing a significant challenge.

DASH CIC-START awardee Restore Hope Ministries worked with Asemio to utilize technology that allows for the analysis of personally identifiable information while preserving clients’ privacy. The collaboration shared their findings in a new white paper that describes the process of using multi-party computation technology to answer questions that can aid service providers in exploring the barriers that underserved populations may be facing. The first question they asked: what is the overlap of populations served by two distinct organizations? The results of the overlap analysis confirmed that a significant opportunity exists to increase access to services for a subset of individuals through better outreach…(More)”

What statistics can and can’t tell us about ourselves


Hannah Fry at The New Yorker: “Harold Eddleston, a seventy-seven-year-old from Greater Manchester, was still reeling from a cancer diagnosis he had been given that week when, on a Saturday morning in February, 1998, he received the worst possible news. He would have to face the future alone: his beloved wife had died unexpectedly, from a heart attack.

Eddleston’s daughter, concerned for his health, called their family doctor, a well-respected local man named Harold Shipman. He came to the house, sat with her father, held his hand, and spoke to him tenderly. Pushed for a prognosis as he left, Shipman replied portentously, “I wouldn’t buy him any Easter eggs.” By Wednesday, Eddleston was dead; Dr. Shipman had murdered him.

Harold Shipman was one of the most prolific serial killers in history. In a twenty-three-year career as a mild-mannered and well-liked family doctor, he injected at least two hundred and fifteen of his patients with lethal doses of opiates. He was finally arrested in September, 1998, six months after Eddleston’s death.

David Spiegelhalter, the author of an important and comprehensive new book, “The Art of Statistics” (Basic), was one of the statisticians tasked by the ensuing public inquiry to establish whether the mortality rate of Shipman’s patients should have aroused suspicion earlier. Then a biostatistician at Cambridge, Spiegelhalter found that Shipman’s excess mortality—the number of his older patients who had died in the course of his career over the number that would be expected of an average doctor’s—was a hundred and seventy-four women and forty-nine men at the time of his arrest. The total closely matched the number of victims confirmed by the inquiry….

In 1825, the French Ministry of Justice ordered the creation of a national collection of crime records. It seems to have been the first of its kind anywhere in the world—the statistics of every arrest and conviction in the country, broken down by region, assembled and ready for analysis. It’s the kind of data set we take for granted now, but at the time it was extraordinarily novel. This was an early instance of Big Data—the first time that mathematical analysis had been applied in earnest to the messy and unpredictable realm of human behavior.

Or maybe not so unpredictable. In the early eighteen-thirties, a Belgian astronomer and mathematician named Adolphe Quetelet analyzed the numbers and discovered a remarkable pattern. The crime records were startlingly consistent. Year after year, irrespective of the actions of courts and prisons, the number of murders, rapes, and robberies reached almost exactly the same total. There is a “terrifying exactitude with which crimes reproduce themselves,” Quetelet said. “We know in advance how many individuals will dirty their hands with the blood of others. How many will be forgers, how many poisoners.”

To Quetelet, the evidence suggested that there was something deeper to discover. He developed the idea of a “Social Physics,” and began to explore the possibility that human lives, like planets, had an underlying mechanistic trajectory. There’s something unsettling in the idea that, amid the vagaries of choice, chance, and circumstance, mathematics can tell us something about what it is to be human. Yet Quetelet’s overarching findings still stand: at some level, human life can be quantified and predicted. We can now forecast, with remarkable accuracy, the number of women in Germany who will choose to have a baby each year, the number of car accidents in Canada, the number of plane crashes across the Southern Hemisphere, even the number of people who will visit a New York City emergency room on a Friday evening….(More)”

Investigators Use New Strategy to Combat Opioid Crisis: Data Analytics


Byron Tau and Aruna Viswanatha in the Wall Street Journal: “When federal investigators got a tip in 2015 that a health center in Houston was distributing millions of doses of opioid painkillers, they tried a new approach: look at the numbers.

State and federal prescription and medical billing data showed a pattern of overprescription, giving authorities enough ammunition to send an undercover Drug Enforcement Administration agent. She found a crowded waiting room and armed security guards. After a 91-second appointment with the sole doctor, the agent paid $270 at the cash-only clinic and walked out with 100 10mg pills of the powerful opioid hydrocodone.

The subsequent prosecution of the doctor and the clinic owner, who were sentenced last year to 35 years in prison, laid the groundwork for a new data-driven Justice Department strategy to help target one of the worst public-health crises in the country. Prosecutors expanded the pilot program from Houston to the hard-hit Appalachian region in early 2019. Within months, the effort resulted in the indictments of dozens of doctors, nurses, pharmacists and others. Two-thirds of them had been identified through analyzing the data, a Justice Department official said. A quarter of defendants were expected to plead guilty, according to the Justice Department, and additional indictments through the program are expected in the coming weeks.

“These are doctors behaving like drug dealers,” said Brian Benczkowski, head of the Justice Department’s criminal division who oversaw the expansion.

“They’ve been operating as though nobody could see them for a long period of time. Now we have the data,” Mr. Benczkowski said.

The Justice Department’s fraud section has been using data analytics in health-care prosecutions for several years—combing through Medicare and Medicaid billing data for evidence of fraud, and deploying the strategy in cities around the country that saw outlier billings. In 2018, the health-care fraud unit charged more than 300 people with fraud totaling more than $2 billion, according to the Justice Department.

But using the data to combat the opioid crisis, which is ravaging communities across the country, is a new development for the department, which has made tackling the epidemic a key priority in the Trump administration….(More)”.

The Ethics of Hiding Your Data From the Machines


Molly Wood at Wired: “…But now that data is being used to train artificial intelligence, and the insights those future algorithms create could quite literally save lives.

So while targeted advertising is an easy villain, data-hogging artificial intelligence is a dangerously nuanced and highly sympathetic bad guy, like Erik Killmonger in Black Panther. And it won’t be easy to hate.

I recently met with a company that wants to do a sincerely good thing. They’ve created a sensor that pregnant women can wear, and it measures their contractions. It can reliably predict when women are going into labor, which can help reduce preterm births and C-sections. It can get women into care sooner, which can reduce both maternal and infant mortality.

All of this is an unquestionable good.

And this little device is also collecting a treasure trove of information about pregnancy and labor that is feeding into clinical research that could upend maternal care as we know it. Did you know that the way most obstetricians learn to track a woman’s progress through labor is based on a single study from the 1950s, involving 500 women, all of whom were white?…

To save the lives of pregnant women and their babies, researchers and doctors, and yes, startup CEOs and even artificial intelligence algorithms need data. To cure cancer, or at least offer personalized treatments that have a much higher possibility of saving lives, those same entities will need data….

And for we consumers, well, a blanket refusal to offer up our data to the AI gods isn’t necessarily the good choice either. I don’t want to be the person who refuses to contribute my genetic data via 23andMe to a massive research study that could, and I actually believe this is possible, lead to cures and treatments for diseases like Parkinson’s and Alzheimer’s and who knows what else.

I also think I deserve a realistic assessment of the potential for harm to find its way back to me, because I didn’t think through or wasn’t told all the potential implications of that choice—like how, let’s be honest, we all felt a little stung when we realized the 23andMe research would be through a partnership with drugmaker (and reliable drug price-hiker) GlaxoSmithKline. Drug companies, like targeted ads, are easy villains—even though this partnership actually couldproduce a Parkinson’s drug. But do we know what GSK’s privacy policy looks like? That deal was a level of sharing we didn’t necessarily expect….(More)”.

Datafication and accountability in public health


Introduction to a special issue of Social Studies of Science by Klaus Hoeyer, Susanne Bauer, and Martyn Pickersgill: “In recent years and across many nations, public health has become subject to forms of governance that are said to be aimed at establishing accountability. In this introduction to a special issue, From Person to Population and Back: Exploring Accountability in Public Health, we suggest opening up accountability assemblages by asking a series of ostensibly simple questions that inevitably yield complicated answers: What is counted? What counts? And to whom, how and why does it count? Addressing such questions involves staying attentive to the technologies and infrastructures through which data come into being and are made available for multiple political agendas. Through a discussion of public health, accountability and datafication we present three key themes that unite the various papers as well as illustrate their diversity….(More)”.