This week’s interview is with Lucy Baker, an intern in the Collection Service Division. Ms. Baker is working on the foreign legal gazettes gifted to us by the Dag Hammarskjold Library at the United Nations. She has worked on material in various languages and is undaunted by the challenge.
Describe your background.
Born and raised in the suburbs of Silver Spring MD, I have spent most of childhood pretending I live in the city. Until then, I live in a small neighborhood on the outskirts of D.C. with my lovely family while attending The Academy of the Holy Cross in Kensington MD.
How would you describe your job to other people?
I get the pleasure of inventorying UN gazettes. To my surprise, it’s actually quite enjoyable; however, it involves a lot more heavy lifting than one would think.
Why did you want to work at the Law Library of Congress?
When I was in third grade my class went on a field trip to The Library of Congress. To say it was life changing would be an overstatement. But still, even as a third grader I remember thinking how wonderful it was that all these books were simply a short driving distance away. Ever since then I wanted to become more closely involved. And here is my chance. I also enjoy learning about politics and government, so looking at these old gazettes, and getting a global perspective of different countries’ governments has been fascinating.
What is the most interesting fact you’ve learned about the Law Library?
Every single day, the Library acquires another 15,000 items. Of these, about 11,000 are added to the library’s collection. These items are sometimes gifted to the Library, but may also be received through Copyright, purchased, or acquired through government agencies.
What’s something most of your co-workers do not know about you?
Much to my embarrassment, I still have not mastered the art of whistling. No matter how hard I try I am unable to whistle and it kills me inside.
Could she believe what she heard?
Sitting in her office Thursday morning, Health and Human Services Secretary Sylvia Burwell saw on her computer screen that the Supreme Court was about to announce its ruling on a challenge that could cripple the health law. “You knew this was it,” she said.
As she rushed down the hall to a conference room where her team was waiting, Burwell heard a cheer. “And that’s the moment that I knew” the justices had upheld the law’s subsidies helping more than 6 million people purchase health insurance, she recalled.
“I’m like, ‘Are we sure?’ ” she said. “Of course everyone was reading through quickly and following it at that point.”Special Coverage: King v. Burwell
Read The Decision (PDF)
Video Analysis: Why Did The Supreme Court Uphold Subsidies?
But, she added, it was more than just a legal victory. “It was very emotional because I met all those people,” Burwell said, visibly moved as she described her reaction to the ruling. “When you meet all these individuals [who have benefited from the health law], it really does touch you in terms of what it means. … You couldn’t help your kids, or you couldn’t take care of your parents, and that’s what these people face.”
During the past few months, Burwell had insisted there was no “Plan B” if the court were to strike the subsidies. With the court’s ruling in place, an insurance “death spiral” — where only sick people stay in the health law’s online marketplaces, or exchanges and healthier individuals drop out — has been averted. But Burwell acknowledges there are many challenges ahead.
Enrollment needs to continue to grow and those who get coverage need to better understand their benefits, Burwell said Friday in a briefing with reporters. Her agency must continue to work with governors to find middle ground that will help them accept the law’s Medicaid expansion. People with employer-based insurance must understand how the law benefits them – for example, adult children up to age 26 can stay on their parent’s health insurance plan and no out-of-pocket payments are required for preventive care. The law’s tools to improve the way health care is delivered or to help detect waste, fraud and abuse in federal health care programs must be better understood, Burwell said.Use Our Content This KHN story can be republished for free (details).
While it’s clear that President Barack Obama will reject some proposed changes to the law, such as a repeal of its requirement that most Americans purchase coverage or the House-passed legislation to repeal the law’s medical device tax, Burwell said the administration is open to ideas that improve affordability, access and quality. “We have work to do. This [law] can be better,” she said.
Implementing a law as sweeping and as complicated as the Affordable Care Act will continue to occupy much of Burwell’s time in the less than two years left in her tenure (or, as Burwell reminds you, 1 year, 6 months and 23 days). And, as she says, “there will always be more to do.”
The little digital breadcrumbs you blithely leave in your wake — the tweets, the online searches, and communities you join, the wearables that account for every step and bite — are beginning to coalesce into what could ultimately become a critically important portrait of your true physical and mental state.
At least that’s what John Brownstein of Children’s Hospital Boston and his colleagues argue as they analyze and collect these “breadcrumbs” amassing a wide spectrum of data to support a broad new concept of personal and public health that they call the “digital phenotype.” It’s like a contemporary extension of the more traditional phenotype — one’s observable characteristics based on a mix of genetics and the environment.
In a sort of digital phenotype manifesto published earlier this year in the journal Nature Biotechnology, Brownstein, an epidemiologist and associate professor at Harvard Medical School and chief innovation officer of Children’s Informatics program, and others, explain the idea like this:
…there is a growing body of health-related data that can shape our assessment of human illness. Such data have substantial value above and beyond the physical exam, laboratory values and clinical imaging data — our traditional approaches to characterizing a disease phenotype. When gathered and analyzed appropriately, these data have the potential to fundamentally alter our notion of the manifestations of disease by providing a more comprehensive and nuanced view of the experience of illness. Through the lens of the digital phenotype, an individual’s interaction with digital technologies affects the full spectrum of human disease from diagnosis, to treatment, to chronic disease management.
Or, put another way: the digital phenotype adds a unique, more fine-grained look at the way people actually live each day.
Here’s one real-world example: Michael Docktor, a gastroenterologist and director of clinical innovation at Children’s Hospital Boston, treats many patients with Irritable Bowel Syndrome and one thing he usually requests is a detailed food diary. “Sometimes teenagers dump a 50-page food diary on me, and it’s hard for me as a human being to comb through that and, perhaps, find that milk, for instance, is a problem.” But, he says, “if we had that information digitally, tracked by software that used algorithms and machine learning to figure out the meaningful correlations and serve it up in an easily digestible format — that could be transformative.”
Brownstein, also founder of the healthmap, a digital tool that tracks infectious diseases around the world through disparate data collection, from eye-witness accounts to government reports. adds: “The digital phenotype gives some insight into health behavior that would otherwise be difficult to obtain during a clinical interaction …The idea that you may see a doctor once, twice a year, and to capture important information on fitness, exercise, sleep, even general happiness, can be challenging. But in fact, a lot of the information we’re streaming can provide useful clinical information.”
The latest crumb of information is this growing field is a study characterizing sleep disorders and related issues through Twitter use. Other digital tracking efforts looked at “the use of cell phone activity to measure one’s activity levels and the association with depression,” researchers note. A study in 2013 looked at links between obesity and Facebook use.
In the Twitter study on sleep issues, published in the Journal of Medical Internet Research, researchers reviewed the contents of tweets to try to discern potential sleep issues.
In an interview, Brownstein says the study began with researchers suspecting that people are constantly complaining about sleep online. So, they wondered, was it possible to investigate overall, social interaction and characterize that core of people with real issus.
“Long term,” he said, “that could fuel research into sleep and sleep behavior and then there’s also the idea it could improve clinical decision making.” He adds: “With this kind of work we’re trying to validate against what we already know…in this case [people with sleep issues had] more negative sentiment, and…are more isolated interms of social interactivity…with some of that validation and real world data, we can think about other ways to investigate sleep and other health outcomes; it could fuel a conversation between a patient and a clinician.”
Here’s more on the study from the Children’s news release:
Researchers from Boston Children’s Hospital and Merck have built the beginnings of “digital phenotype” of insomnia and other sleep disorders based on data from Twitter. This study is one of the first to look at relationships between social media use and sleep issues, and—based on assessments the sentiments expressed in users’ tweets — gives preliminary hints that patients with sleep disorders may be a greater risk of psychosocial issues…
Insomnia and other sleep issues affect between 50 and 70 million Americans. Apart from their impact on productivity, accidents and risky behaviors, chronic sleep disorders also contribute to diabetes, cardiovascular disease and depression.
Historically, population-level research on sleep disorders has relied on survey methods such as the Behavior Risk Factor Surveillance System. However, such methods are time- and resource intensive, expensive, suffer from long lag times before reporting and are not generalizable to the larger U.S. population.
Research based on social media data may help overcome these limitations. To support such research, Hawkins, McIver, Brownstein and their colleagues sought to develop a “digital phenotype,” or baseline profile of what a person suffering insomnia or other sleep disorders “looks” like on social media.
“Sleep deprivation and chronic sleep disorders are not well understood,” said Brownstein. “We wanted to see if we could use new forms of online data, such as Twitter, to characterize the sleep disordered individual and possibly uncover new, previously-undescribed populations of patients suffering sleep problems.”
The research team used publically available anonymized data from Twitter to create a virtual cohort of 896 active Twitter users whose tweets contained sleep-related words (e.g., “can’t sleep,” “insomnia”), or hashtags (e.g., #cantsleep, #teamnosleep), or the names of common sleep aids or medications. They then compared data from that cohort to those of a second group of 934 users who did not tweet using sleep-related terms. The team examined each user’s age, total number of tweets, total numbers of followers or people followed, number of favorite tweets (that is, the number of tweets by others that the user had favorite), length of time on Twitter (that is, how long the user had had an active Twitter account), average number of tweets per day, location and time zone.
The researchers also assessed the time of day and average sentiment—positive, neutral, negative—of each user’s tweets.
The resulting profile of a Twitter user with sleep issues — compared to a Twitter user without — looked like this:
- have been active on Twitter for a relatively long time
- has fewer followers and follows fewer people
- posts few tweets per day on average
- more active on Twitter between 6:00 pm and 5:59 am
- more active on Twitter on weekends and early weekdays
- more likely to post tweets with negative sentiment
Taken together, the data suggest that Twitter users suffering from a sleep disorder are less active on Twitter on average but tweet more during traditional sleeping hours. The increase in negative sentiment in their tweets suggests that sleep-disordered users could be at an increased risk for psychosocial issues.
“These findings are preliminary and observational only, and need to be studied further,” Brownstein cautioned. “But they suggest that social media can be a useful addition to our toolkit for studying the patient experience and behavioral epidemiology of sleep disorders.”
Docktor, the gastroenterologist, agrees that all of this digital tracking is still in its infancy in terms of actually helping doctors practice medicine. Also, he says, issues of privacy are a key concern.
But, he says, the prospects are tantalizing.
“The patients were now seeing are digital natives,” he said in an interview. “They don’t have email, they have Twitter and Snapchat. There’s an incredible amount we might learn — especially in patients with chronic illness. I see a patient once every six months or a year, and they remember the last couple of weeks. They don’t remember they were really sick months before — there is so much recall bias. But with these technologies…there’s an incredible amount of data being collected by patients in the 99.9 percent of time they are out of hospital, and the real question is how do we passively collect that data to make it meaningful and how do we use that data in a way that’s not totally overwhelming to the medical system and providers.”
In winter, season of germs, we can turn for a squirt of protection to the multitudes of handy sanitizer dispensers that have cropped up everywhere over the last few years, from gyms to workplaces to public buildings.
And now, in summer, when the blue skies raise the risk of skin cancer, we here in the civilized city of Boston will now be able to turn to 30 dispensers of free sunscreen that are being installed in the central Boston Common and four other popular parks. They’re expected to be up by July 1.
“Skin cancer and melanoma are among the most prevalent cancers and they’re also among the most preventable,” says Matt O’Malley, the Boston City Councilor who proposed the sunscreen initiative in April.
“So what we are doing in Boston is, we’re offering a service, we’re promoting public health and we’re reminding folks of the importance of sunscreen — at no cost to the taxpayer. It’s an incredibly wonderful initiative and I look forward to seeing it spreading across the country much like the way my freckles spread every summer.”
The idea for dispensers sprang, he says, from a medical student who argued that installing them was a growing practice, including at Hershey Park in Pennsylvania. But no major city has adopted it as a city-wide initiative, O’Malley says — until now.
If the pilot project with 30 initial sunscreen dispensers works out well, he says, the plan is to extend the dispensers to all the city’s playgrounds and parks — more than 200 of them.
The dispensers cost between $100 and $200, O’Malley says, so the ultimate price tag could be close to $50,000 — but not to the taxpayers. The dispensers are a public-private partnership including the Melanoma Foundation of New England and Make Big Change, both organizations that fight skin cancer. The Foundation is covering the cost of the dispensers, according to a press release, and Making Big Change provides the dispenser units; it has also been placing them in New Hampshire beaches and parks.
So how might Bostonians respond to the new dispensers? Well, if a recent Miami Beach program is any indication — and it may well not be, of course — the online response to a Miami Herald account — Miami Beach unveils free sunscreen dispensers on sand — was largely positive. “Very cool!” one commenter wrote. “Great to see sun protection efforts taken so seriously.” Though there was also, inevitably, this:
This is a great idea. Kudos to all involved for embracing such forward thinking ideas, something that is rarely seen in this crazy burg. Unfortunately, since we live in “The Litigious Age” where lawsuits spring up faster than dandelions on a new mowed lawn for just about anything, I suspect someone will blame the city and MB Brands for their future skin cancer because the product just didn’t do the job it was supposed to do. And then you got those idiots who don’t use any kind of sunburn protection who could drop a lawsuit against the city for not ENFORCING them to use it while on its beaches (unless the city erects signs warning beach-goers to lather up and that the city and MB Brands can’t be held responsible for any future skin cancer).* Ai-yi-yi.
For me, the most pressing question that arises from the sunscreen program is: If Boston is now civilized enough to supply sun protection, does this mean that we might even acknowledge human bodily needs to the point that our parks could possibly supply bathrooms to the 100 percent of the public who periodically require them?
I put that query to Matt O’Malley, and he replied that as chair of the City Council’s Committee on Environment and Parks, as a lifelong Bostonian and user of the city’s great park system, he makes it his mission “to make our parks as robust and family-friendly and offer as many amenities as we can.”
So…I think that means maybe someday? For now, Bostonians can watch out for the sunscreen dispensers here:
The Boston Common
Christopher Columbus Park (North End)
East Boston Memorial Park (East Boston)
Jamaica Pond (Jamaica Plain)
Millennium Park (West Roxbury)
And if you live elsewhere but like the idea, you might note that more than 10,000 Americans die each year from melanoma, and last year the Surgeon General put out a “Call to Action” to prevent skin cancer.
Readers, thoughts? Further reading:
As we have mentioned in previous posts, the Law Library of Congress is a Supreme Court depository library. This means that we collect the records and briefs filed in cases before the court. We also receive copies of the U.S. Supreme Court’s decisions hot off the presses. Yesterday we received a bench opinion for King et al. v. Burrell which we eagerly seized and paged through. For this first read through we were not concerned with the court’s decision as to whether the Patient Protection and Affordable Care Act (ACA) made tax credits available to individuals enrolled in a Federal exchange. No, we tore past the opening pages of the opinion to page 14 where our former colleague, John Cannan, was cited for his article on the legislative history of ACA, A Legislative History of the Affordable Care Act: How Legislative Procedure Shapes Legislative History, 105 L. Lib. J. 131.
We believe that our nurturing of John while he was a legal research analyst here in Public Services helped to contribute to his success. We provided careful instruction in legislative history. We generously let him share the late nights and snow days while Congress debated this law. And, some of the Law Library’s master bakers kept up his strength with plentiful baked goods to help him achieve this height of notoriety and fame.
Congratulations John – from all your former colleagues here at the Law Library!