A few books we've read and liked. They all have something to do with health policy (although some are tangential) but they are all entertaining and worth reading. They are all from the "popular press" and should be available at libraries, bookstores and/or on-line.
It's a shame that this book is written in the style of a textbook rather than for the general public, because we all need to hear David Harker's message. Created scientific controversies surround issues where there is broad scientific agreement but the public's perception is that there is uncertainty and doubt. The false controversies can be very dangerous. Beliefs that tobacco has nothing to do with cancer, that vaccines cause autism, that climate change has nothing to do with human actions, and that HIV and AIDS are unrelated cause direct harm to population health, but also lower scientific literacy and undermine faith in science, two factors that have always been important in moving health (and society) forward. Harker explains how to identify a false controversy and how human nature and cognitive biases can feed them. The role of conflicted interests in manufacturing some, but not all, false controversies is infuriating but very instructive. Harker finishes by pointing out the scientific community's responsibilities in countering these myths but also that everyone "should be wary that our emotions, desires overconfidence and personal experiences are playing an irrational and central role in our reasoning and judgment. We should seek the most reliable evidence, rather than settle for what’s easiest to recall."
Every first year public health student hears the story of London's 1854 cholera epidemic, Dr. John Snow, his map, and the Broad Street pump handle - but there is so much more to that story. The Ghost Map describes in terrifying detail the disgusting details of life in an over-populated Victorian city, with none of the infrastructure we take for granted. And the devastating disease that took advantage of the city's growth, with no known cause or cure, and the superstitions that rose to fill that gap. John Snow is a hero for many reasons - his bravery to collect data in the hardest hit neighborhoods (rather than fleeing like many of his class), his collaboration with the Reverend Henry Whitehead whose social connections provided a real world connection to the data, his steadfast determination to test hypotheses, and follow the science, not popular opinion. It's a riveting story of overcoming odds, persuasion, credibility and luck (good and bad). It's worth reading to the end where the author describes the fate of the cholera bacterium in the modern world, why urbanization continues despite technological advances that make it easier to live anywhere, and why that's mostly a good thing. Really good read.
Sometimes raw and even offensive, Tirado describes for middle class readers what it is like to live in working class America. Tirado is an educated white married mother of two who needs two jobs, in addition to her husband's two jobs, to make ends meet. She describes in vivid detail why she makes decisions that may seem (and often are, she admits) self-defeating, including health risks like smoking and eating junk food. Her take on government assistance is revealing - Catch-22 eligibility rules that make no sense and so many holes "Moby Dick could swim through." Chapters include "You Can't Pay a Doctor in Chickens Anymore", "I'm Not Angry So Much as I'm Really Tired", "We Do Not Have Babies for Welfare Money" and "I've Got Way Bigger Problems Than a Spinach Salad can Solve." Readers should definitely get to the final chapter "An Open Letter to Rich People" - her description of "rich people work" meetings is funny but embarrassingly true. Her comparison with minimum wages jobs and the work ethic will make you think.
In the 1890s New York's Lower East Side was the most densely populated square mile on the planet, with largely immigrant residents. A third of children born there died before their fifth birthday often due to epidemics of diarrhea, smallpox, typhus, child labor, poor sanitation, and other preventable conditions. But by 1911 the child death rate had fallen sharply and the community was among the most healthy in the country. By her retirement in 1923, Dr. Josephine Baker, director of the city's Bureau of Child Hygiene, was credited with saving the lives of 90,000 children. In her very entertaining autobiography Dr. Baker describes how she did it. I confess I don't always finish books, even good ones that make our Book Club list, but I was sorry this one ended. Just some of her remarkable stories address changing fortunes during her childhood, becoming an early woman physician, securing funding from Tamany Hall for child health, the impact of the "Great War" and promoting public health in an exciting, pioneering age. Her perspectives on politicians will be very familiar to current advocates. The writing style alone is worth the read. So many great quotes, but one of my favorites: "People who write books on how much progress human beings have made are always telling us that the day of experimentation without a scientific background is past. Working in the public health field is apt to make one think twice about that dictum. No doubt the same is true of any other field where well established procedures make humans reluctant to reinspect their premises and contemplate change."
This very readable book organizes the problems in modern American health care into ten myths, that are accessible to any reader, but not dumbed down. The myths are simple and straightforward, without all the usual waffling. The descriptions not only outline the problem, but also include the causes - why our "system" is the way it is - and why it is hard to change. The author, a reformed hospital executive, is not sparing in blaming hospitals, but also points at insurers, physicians, employers, politicians, bureaucrats, and consumers. Myths debunked include - the US has the best health care system in the world, the concept of shopping for health care services, and that treatments are based on science and best practices. A great read for consumers, but important perspectives for all stakeholders.
Public health students know the famous story of John Snow's 1854 map of London cholera cases that highlighted the outbreak's clustering around the Broad Street water pump. He removed the pump handle and the number of deaths dropped. (It turns out that deaths were dropping anyway and the pump handle may have had nothing to do with it, but in any case . . . ) The story demonstrates that visualizing data can uncover clues that lead to solutions. Medical Illuminations is an entertaining walk through dozens of health care examples of good, bad and better examples of data delivery with lessons to help make data more clear and avoid counterproductive mistakes. Issac Asimov said, "The most exciting phrase to hear in science. The one that heralds new discoveries, is not 'Eureka' but 'That’s funny . . . '". Constructive data analysis, editing and visualization can drive the "That's funny" moment. This books shows us how.
The title sold this book, but the content delivered on the promise. It was entertaining and funny - not what you expect from a book about math. Math touches everything, or it should, and we need to understand the concepts to make better decisions. The author dives into fascinating questions using math concepts including how long until every American is obese (the dangers of extrapolation), should I buy stocks from the analyst that seems to have made the right call eight weeks in a row (selection - it turns out you were among the few who got his good picks in the mail every week), and perspectives on genetic influences on schizophrenia, and rare serious side effects of birth control pills (what statistical significance is and what it isn't).
The newest edition of this incredibly helpful primer on the US health system is even better than the 2012 version. Written by two med students who searched for a balanced, useful, and readable source of information for students like themselves explaining the industry and culture they were about to join, the book includes just enough information to be useful, but not enough to be confusing. The new edition, at 223 pages, includes updates on virtually every page including implementation of the Affordable Care Act, the recent health cost slowdown, and what we're learning about health care quality. I'll be opening my health policy class this semester with a quote from their Policy and Reform chapter. "Disclaimer - This chapter is out of date. It went out of date the second we sent it to the printer." But then they follow up with great take-away lessons such as "What's 'obvious' may not be right (or may not work)", "What’s right today might not be right tomorrow," and "Never be too sure of yourself. (i.e. the data is ever-changing, almost every issue has a lot of nuance you might be missing, and the other side likely has good points.)" Definitely recommended - both students and wonks can find a lot here.
This book is a great compendium of health care innovations that focus on improving quality and ensuring that precious, scarce resources are maximized. Helpful lessons that work from the real world include overcoming turf battles in building teams, organizing around consumers’ needs rather than medical specialties, effectively using peer pressure to improve performance, and ensuring that shiny new (expensive) technologies are used appropriately. Authors also describe how the structure of the current system (fee-for-service and beyond) can sabotage great new, simple, efficient ideas. Examples include a less expensive, portable X-ray machine that could expand access to important patient0centered care at lower cost, but threatened business models across the health care system and didn’t move forward. Very concrete, very clear guides and tools for practices and policymakers working to improve quality and access to care, while holding the line on skyrocketing health care costs.
Freakonomics and SuperFreakomomics, earlier CT Health Policy Project Book Club selections, gave us interesting examples of how a different perspective on a problem can give us better answers. The examples were fascinating, which is great if they hit the issues you work on, but we can’t wait for the authors to solve all our problems. Their new book helps the reader find that new perspective and "think like a freak". Lessons include think like a child, focus on incentives, and learn to appreciate quitting. They also spend a good amount of time working through the barriers to "thinking like a freak" including no time, the comfort of running with the herd, and blindness to biases. Some sound obvious when you read them, but if we used them regularly there wouldn’t be such a need for new perspectives and creative solutions. Health care could definitely use some new thinking.
I received this book when the author came to an ICER board dinner in Boston this spring. He spent the evening talking and strategizing with a small group of prominent health care stakeholders and leaders who all care deeply about comparative effectiveness research and other ways to build a smarter health care system. Reading the book felt as if he was bringing the country into that fascinating conversation. As a primary architect of the ACA, he is naturally a big believer in the potential of the law to transform our broken health care system. But he is not blind to the challenges and problems - both in the law and in implementation. The book is an accessible overview, explaining both the bill and the problems in the US health system within the context of history and current politics. But he goes further than other ACA authors in candidly describing the problems of implementation, internal and external, future challenges, health care megatrends, and very specific predictions about the future of health care in America.
The authors of The Why Axis believe that findings from economic experiments conducted in labs with undergraduates playing symbolic games do not translate into actionable lessons for the real world. Gneezy and List describe their messy, labor intensive but far more accurate real world experiments complete with control groups and direct outcome measures. They've looked at whether paying students, parents and/or teachers for better performance works (it does), paying employees for healthy behaviors saves on health costs (it does), how to reduce discrimination in markets (tell them you are getting more estimates), does a nutrition education program get kids to choose healthier foods (it doesn't, but prizes work), and how to structure incentives and choices to maximize impact. A fascinating book that ends with a strong call to include experiments in any endeavor. Too many policies are set based on intuition or extrapolation from another setting, and we end up scratching our heads later not sure if it worked, or wondering why it didn't.
A fascinating, sort of scary, book about the power of big data and new analytics to predict human behavior. In 2012 there was a lot of news about the revelation that Target was using predictive analytics to identify and market to pregnant women and their families, sometimes before they've told anyone they are expecting. Since then analytics have gone much further - but it is usually a good thing. Hundreds of examples in the book include predictions of flu trends from Google searches, that retirement reduces life expectancy, and smokers suffer less from repetitive motion disorder. The author goes beyond giving examples to explain in clear language how it's done and how companies and the government are acting on those predictions.
This book should be required reading for every advocate. Malcolm Gladwell's latest book describes why the underdog often wins against what initially seems like long odds. After he drills down on the story of David and Goliath, the reader comes to see that Goliath didn't stand a chance. Often being under-resourced, disadvantaged and/or overwhelmed is a large advantage. With examples like the myth of smaller class size, difficult childhood experiences as an advantage, and perception matters for little fish in big ponds he makes the case that at a point, increasing resources backfire. I will be using a lot of the lessons here, and drawing inspiration, as a health care advocate up against large and imposing opponents. There is power here at the bottom of the food chain.
"Statistics is like a high-caliber weapon: helpful when used correctly and potentially disastrous in the wrong hands." If you want to understand health policy, you need to get comfortable with statistics. It’s not as hard as you might think. Naked Statistics makes the concepts accessible without dumbing anything down. Charles Whelan emphasizes common sense concepts, with lots of health care examples, and keeps the math to a minimum. And best of all, it is entertaining reading - honest.
American health care is complicated, so byzantine that few who work in the system even understand its reach and rules. Two medical students from Washington University in St. Louis have performed a massive public service in writing this book. It is a clear, understandable, practical guide for any audience, and at 226 pages, remarkably brief. They have found a way to describe the system in language any American can understand but wonks will also appreciate. Even the organization of the book is better than others on the subject - starting with the structure of the current "system" and ending with reform, including the impact of the Supreme Court's decision last summer. They don't favor any solution over another and don't editorialize as too many authors do - the facts speak for themselves. Highly recommended.
In his New York Times blog, Nate Silver uses statistics to sort through the hyped, spun, and intentionally obscured political fog to accurately forecast elections and Congressional votes. In his book, The Signal and the Noise, he describes how he does it – by avoiding over-confidence, by carefully looking at the data without preconceptions, and acknowledging what we don’t know. He addresses not only politics and polling, but also flu epidemics, baseball, economic recessions, and climate change among other topics. A very interesting analysis demonstrates the historic inaccuracy of political pundits. For example, McLaughlin Group guest predictions are almost as likely to be completely false as completely true. He points out that it is rare that anyone follows up and holds them accountable, and guests that make large and unusual claims (true or not) get more attention. The parallels with CT’s health policy landscape are scary – lots of poor forecasting that isn’t improving, conflicting interests, and very little accountability.
Numbers have amazing powers - to enlighten a problem or to obscure the answer. "Numbers disarm skeptics, befuddle journalists, and hoodwink the public like no other kind of propaganda can." Numbers are used/abused in health care to serve many purposes - sometimes innocently and sometimes not. For instance, did you know that people with high debts are more likely to be in poor health - the higher the debt, the worse their health is likely to be. So, obviously, credit cards must cause illness. Proofiness is a collection of stories demonstrating how numbers can be misused to serve an agenda - and how you can see through them to the truth. The stories are organized into themes that make the deceptions easier to spot and to resist. Fortunately, we have the answer to proofiness - learning math.
A study found that one third of people who were told they needed heart bypass surgery did not need it. Tens of thousands of Americans have back surgery for pain when there is no evidence to support it; studies have found that pain management and therapy are more effective. The 70 million CT scans performed in 2007 will cause 29,000 cancers in Americans and 15,000 deaths. One third of Americans believe they have received medical care they did not need. There are powerful interests very heavily invested in providing too much care, whether we need it or not. The Treatment Trap collects mountains of evidence that we are being overtreated and it is killing us. Moreover, we can't afford it. The authors include heartbreaking stories and recommendations that are commonsense and practical. Before people get worked up about "rationing", they need to read this book.
The first 50 pages of Landmark are an objective inside account of how national health reform passed this year, despite historic challenges highlighting the players (good and bad) and their motivations. Connecticut's Sen. Lieberman gets his own (unflattering) chapter. But the majority of the book takes the reader through the new law, with all its pieces, and describes in very accessible language how it will work for the variety of stakeholders. A great survey of the law balancing the politics that shaped it, for better and worse, with what it is - which unfortunately too often gets lost in the former. I'll be using it in my health policy class this fall.
What would happen if there was an earthquake in an American community, the Red Cross came into town and provided disaster relief, but a couple of months later everyone got a bill for those services, marked up tenfold, and people who couldn't pay were sued? There would be outrage; it wouldn't be tolerated. But that is what happens to the uninsured at nonprofit hospitals every day. Do No Harm is the story of a doctor and an accountant who brought attention to the finances of their local hospital, Phoebe Putney, in Albany, GA. The hospital had been flying highly paid executives in private jets to the Cayman Islands where they had off-shore accounts and businesses, paying for Board retreats at resorts, and $250 cigars all while enjoying $22 million in tax breaks due to their nonprofit status. At the same time, the hospital was suing uninsured patients forcing them into bankruptcy. After the whistleblowers went national in exposing this widespread scandal, they and their families were intimidated personally, threatened financially, and finally arrested and indicted by a district attorney who was working for the hospital, and later took a job representing the hospital. The story has a mixed ending - the heroes and their families are fine - financially and personally - but the hospital has not changed the way it does business. Congress has been investigating the nonprofit hospital sector and some financial transparency legislation has been passed.
I usually avoid reading about other countries' health systems; it’s depressing how backward America is about health care. It is odd that the best way to motivate policymakers to do something is to suggest that other states have done the thing and that we are behind, but the worst way to move them is to suggest borrowing a good idea from another country. But the Healing of America is worth reading. The book describes six other countries' health systems, including the big picture of how much they spend, how policies are made and the finer details of how people access care, how providers deliver it, and by what rules. He busts through pervasive American myths about health care in other countries such as "socialized medicine," rationing and waiting lists. The book is not a dry tome for wonks, but an entertaining read that any reader would enjoy.
Sequels can be dilutions of the original, but Super Freakonomics is better than Freakonomics. Who knew that economics, microeconomics at that, could be entertaining? Both books help you see everyday interactions differently and find new, unexpected solutions to intractable problems. The book includes more examples of why everything, even things that don't seem it, involves competing incentives and how to find simple, cheap solutions by thinking about things differently including information technology and ER overcrowding, measuring the skill of doctors, and getting doctors to wash their hands with a screen saver. Did you know that walking drunk is more dangerous than driving drunk (the authors don't promote either)? How the automobile saved New York City from a horse manure crisis. Does a sex change affect your salary since men make more than women? Really funny stuff.
This book is a collection of essays describing real life stories from providers and victims about their experiences with medical errors. Providers' descriptions of pain, guilt, shame, and fear for their future are compelling. Victims' stories include indifferent and careless providers and a stupid system that leaves them with few options to get the care they need. The heroes in these stories are eager to confront their errors, system design failures, and to embrace shared problem solving with other providers, with patients and with families. As a patient/consumer advocate, this book included much of what I expected to hear - terrible stories that should never have happened - but some I didn't - provider willingness to embrace transparency and accountability, to put egos aside to improve our broken health care system, and to say that they are sorry.
Why were CEOs of large tobacco companies willing to testify under oath that nicotine is not addictive? Why might a patient with a sore knee be more likely to receive an MRI exam if he has conventional health insurance than if he belongs to an HMO? Why do physicians tend to overprescribe antibiotics? Through questions, this book makes fundamental economic principles understandable and relevant. The author is a professor at Cornell and these questions were assignments from his introductory economics classes. In finding the questions and then the answers, the students illustrate basic principles in ways that formulas and graphs can’t. There are at least a hundred questions, most not on health topics. The answers to the above questions are, in order, because they get the big money (labor market economics), capitation (and conflicting profit motives), and even though it is worse for the population doctors overprescribe antibiotics because we whine and it’s just easier (failure of the invisible hand and the tragedy of the commons).
"It is clear that chronic disease management has to go beyond the doors of the medical office if we are serious about helping the chronically ill learn to navigate the system." Our current healthcare system is in desperate need of repair or even a complete overhaul. In this book Jennifer Jaff chronicles the thought-provoking stories of patients who battle our healthcare system to try and manage their chronic illnesses and how it affects every aspect of their lives.
Ms. Jaff tells her own story of living with Crohn's disease. When she moved from one state to another, she was frustrated by having to start over with doctors who were not familiar with her medical history. Sometimes she would have to argue with a new doctor who wanted her to re-try a treatment that hadn’t worked for her in the past. (She tried the treatment again, and it didn't work.)
According to Ms. Jaff, patients with chronic illnesses can be better served by changes in our healthcare policy and a move towards the medical home and SustiNet. A medical home is a system in which the primary care physician manages the patients' care and coordinates care and referrals for other necessary medical treatments and Sustinet is the Connecticut healthcare reform plan. These patients currently manage their healthcare themselves, generally "without education, training or support."
For more on Jennifer Jaff, go to Advocacy for Patients with Chronic Illness. Review by Karen Nepomuceno, CT Health Policy Project Intern, Spring 2009
According to the Environment Protection Agency, a human life is worth $6.1 million. That estimate came out of cost-benefit analyses of arsenic from drinking water. While clearly biased against what the authors describe as weakening of consumer protections in the last administration, Priceless provides a fascinating look at the assumptions and questionable methodologies used to develop cost benefit analyses across fields. The costs of arsenic in drinking water, and resulting bladder cancer, was extrapolated from a survey conducted in a shopping mall in Greensboro, SC in the late 1980s asking shoppers how much they would be willing to pay to avoid chronic bronchitis. Apparently many cost benefit analyses are based on that same small survey of mall shoppers. The authors point out that costs of regulation are routinely exaggerated while benefits are minimized through questionable manipulations of questionable data. How lives are valued in cost benefit analyses invite twisted ethical conclusions that most Americans would reject. A fascinating book that questions the ability of science to answer complex human questions.
Written by a physicist who won an IgNobel Prize for calculating the optimal way to dunk a doughnut, this is a fun, accessible, humorous take on a new science, game theory. The author wrote the book because he was “worried about the problems that society now faces and wanted to understand what game theory had to offer in terms of strategies for cooperation.” He relates the lessons of game theory to situations from parenting to negotiating prison sentences to international relations. He points out the logic of escalation with a quote from a protest song, "Everybody’s crying peace on earth, Just as soon as we win this war." With everyday examples, he demonstrates how an objective review of the incentives and motives of various actors in difficult situations can help us build or respond to maximize outcomes for everyone. While this sounds academic, policymakers (and the advocates who hope to influence policy) who are constantly "between a rock and hard place" can learn a lot – he describes the "Seven Deadly Dilemmas" which will sound very familiar. Not that you should skip to the end, but he finishes the book with ten very concrete tools that individuals can use to optimize their strategies, defuse tense situations, build trust and move out from behind that rock.
Americans make dozens, maybe hundreds of choices every day – some we make well, and some are mistakes. Nudge explains how we can effectively improve people’s choices, including those that affect their health, by re-designing systems to favor healthy choices through “choice architecture”. Changing where healthy foods are positioned in school cafeterias can increase consumption by as much as 25 percent. Most people choose the “default” option when making choices – buying insurance, deciding whether to be an organ donor, or choosing investments. Most people are busy and overwhelmed with information, so inertia is strong. Choice architecture uses these and other natural human tendencies to build systems that favor healthy, positive, optimal choices. I found this book exceptionally helpful in thinking about alternatives to an individual health insurance mandate <link here to policymaker issue brief> that encourage the best health coverage decisions without limiting consumers’ choices.
In the late 1960’s Jack Wennberg studied the rate of medical treatments in similar communities in Vermont. He and his collegues found striking differences between towns in rates of dozens of procedures including tonsillectomies (10 fold differences), hysterectomies (three fold), appendectomies (three fold), and surgery for varicose veins (four fold). The differences couldn’t be explained by differences in risks, health status, income, education or access to health care. After repeating the results, he concluded that while most Americans assume that the practice of medicine is based on science, much is based on guesses, experiences, and local tradition. Since that time, similar research has found many common procedures that do more harm than good including tonsillectomies, hysterectomies, frontal lobotomies, radical mastectomies, arthroscopic knee surgery for arthritis, proton pump inhibitors for ulcers, and high dose chemotherapy for breast cancer. Americans spend more than any other country per person on health care, but thousands of us die each year of medical errors. The author suggests that much of our spending is not only wasteful, but is making us sicker, and those resources could be diverted to cover the uninsured.
A fascinating book that details the psychological forces that keep us from making good decisions. There are dozens of great examples, but my favorite is the “twenty dollar auction”. One the first day of class, a Harvard business school professor plays a game with his students. He will auction off a twenty dollar bill to the highest bidder. The highest bidder gets the bill, but the second highest bidder also has to pay his bid and receives nothing. Bargain hunting students quickly move the bidding up to $12 or $16, when the contest slows down and only the two highest bidders continue. At $17 for instance, the second highest bidder can go to $18 and hope to win the bill or risk losing his entire $16. The students “roar with laughter when the bidding passes $20; the professor has never lost money in the game. The record is $204; all proceeds go to charity. Students are caught “chasing the loss” – the deeper the hole, the more they dig. This example illustrates the force of loss aversion, one of several psychological forces that drive our irrational behavior. Thankfully, the authors do not just describe these traps, but provide guidance to avoid them – critically important in policymaking.
Why do some ideas, even mistruths, become common knowledge and others die before they get started. This is critically important for those of us who value information and educating the public about important health issues. What makes some ideas “sticky”. The authors have very compelling evidence that there are six characteristics of compelling messages – they are simple, unexpected, concrete, credible, emotional and tell a story. They then take you through making your idea more sticky. I was lucky enough to hear one of the authors speak in Hartford a few months ago – he was great. The book is even better.
A compelling set of stories from across America outlining the human cost of our broken health care system. The stories describe in concrete detail the impact on patients who can’t afford medications, families who can’t pay massive medical bills, and people who put off routine check ups with disastrous consequences. Stories are placed in context with the policies that create the problems and the history of how this mangled system came to be.
I expected to hate this book; I kept putting off reading it. It was recommended by people I generally don’t agree with – conservative business proponents – I am a consumer advocate. But I became a convert. It is not news that the American health care system is broken – that economic incentives conflict with just about everyone’s best interests. But the common wisdom is that there is no way to fix it – there is too much money being made by too many interests and any change puts too much is at risk. But this book turns all that on its head. Imagine a system that makes value a priority, not simple cost reductions – rewarding providers, plans and payers that provide good patient outcomes. The authors argue that competition now is focused on maximizing your revenue and minimizing your costs, but should be focused on identifying and rewarding results through innovation. The authors posit that current solutions – consumer driven health plans, electronic medical records, pay for performance and single payer systems – will not work. The solution is measuring and publicly reporting patient results to drive business to high value providers. They also believe that high quality care costs less in the long run and that universal health care (they want an individual mandate) with subsidies to make it affordable for lower income Americans will improve efficiency. The book is long and dense, but worth the effort.
Since 2003, StoryCorps has been traveling across the country recording the stories of over ten thousand average Americans. Listening is an Act of Love is a selection of some of the most touching and remarkable. Unlike other histories, the stories are not of powerful or famous history makers, but of average Americans’ experiences. Some are everyday stories from past lives and some from extraordinary times like the Vietnam War, Hurricane Katrina and from the World Trade Towers on 9/11. An important part of American history and a wonderful demonstration of the power of storytelling. Advocates need to do a better job of telling stories and we need to ease up on fact sheets.
Americans carry a staggering amount of personal debt, much of it on credit cards. This documentary uses humor, statistics, interviews and stories to expose the financial burden on families and the financial industry that feeds off their misfortune. As half of all bankruptcies are due to high medical bills, this is a critical piece of health care and health care financing that is too often overlooked.
This book is incredibly readable, engaging, and insightful. The essays are discrete, but they build on one another. It is a book that can sustain a straight read-through. Or, you can read it episodically – jumping around from an essay at the beginning to one at the end or putting the book down for other endeavors in between essays. No matter your approach, you will be rewarded for your effort.
In many of the essays, Gawande argues that great strides in healthcare can be made by concentrating on how healthcare is delivered, rather than on a race to new technologies of care. In his essay “Casualties of War,” Gawande looks at the vast reduction in fatalities in the Afghanistan and Iraq wars, compared to previous wars. He attributes this success to the attention to data collection and analysis. By tracking the kinds of injuries, the medical responses, and the outcomes, military medical personnel have been able to recommend preventive measures and improve the medical response system. Simple steps. Things like making sure soldiers wear their bulletproof vests or moving the medical team together with soldiers so that response times are cut substantially. These interventions were possible only because the medical staff tracked patterns of injury and analyzed their results.
In another essay, “The Bell Curve,” Gawande reports on the efforts of an organization called the Institute for Healthcare Improvement to improve medical practice by doing, in Gawande’s words, “two things: measure ourselves and be more open about what we are doing”. One outcome of this openness involves patient participation in improving the delivery of healthcare.
Connecticut could learn from the lessons of these essays. Many of the data that could be helpful for those of us who are trying to make our healthcare system more accessible, effective, and affordable are locked in individual companies (hospitals, doctors’ practices, insurance companies) and in our state agencies (where, even with FOI, the information may or may not be in a useful format). More systematic data collection and greater openness with that information is a necessary – though not sufficient – precondition to improving our healthcare system.
Over history, the war on cancer has focused considerable resources at detection and treatment of the disease. Much less attention and far less funding has been paid to prevention - finding and eradicating the causes - tobacco, alcohol, the workplace and other environmental hazards. Now we know why. "Major chemical companies bought up and moved the contaminated Louisiana delta towns of Mossville and Reveilletown. These companies did this without admitting any responsibility for the pollution that had rendered these places uninhabitable. They then pointed to the absence of information on health harms in these areas as proof that no such damage occurred." America and Canada are two of the only industrialized nations not to have banned asbestos. The book highlights cozy relationships between the officials, academics and nonprofit leaders we relied on to protect our health and the special interests that profit from dangerous chemicals. The book outlines the strong economic interest of corporate America to enhance treatments of cancer to make it less deadly, at which they have been very successful, but no interest in cleaning up their act to prevent cancers. "The result is appalling: over 10 million preventable cancer deaths over the past thirty years. This has been no accident."
Based on the novel by Christopher Buckley, this exceptionally funny movie follows tobacco lobbyist Nick Naylor as he “spins” tobacco as an innocuous product and an honest industry. He works to turn opponents of smoking and promote cigarettes through movies. The satire uses humor to expose our system’s flaws and how unscrupulous spinmiesters working against our health can use culture against us.
Thousands of low wage workers were given cameras to document their lives to create this picture book, providing a glimpse into the lives of the people who make our clothes, look after our children, and cook our meals. The workers took the pictures, chose which to publish and wrote short descriptions to explain the context. The book is in four chapters – work, leisure, community and family – parts of life common to all Americans. One worker said, “With each picture I feel like a gardener. When you take the film, each roll is like a seed and when you see your creation, it is a flower.” A day laborer entitled his picture of people dancing with the caption, “This is a picture that would help everyone else know that we come to this country not to do bad things like people say. We come here to work and have fun.” A picture of a NY nurse asleep at her desk is titled “Burnout Prevention” with the caption “Sometimes, the only way to make it through is to not.” I see something new every time I open this book.
“A true piece of writing is a dangerous thing. It can change your life.” – Tobias Wolff This book shows how important words can be, to convey mighty ideas and to inspire action. But writing to change the world is not easy. Mary Phipher gives the background and the confidence writers need, as well as concrete tools for writing letters, speeches, essays, blogs, even poetry to educate, persuade and motivate.
A straightforward, user-friendly, practical guide to an intimidating system. The state capitol is daunting enough, but Washington DC can seem to be a foreign country. This book gives very forthright guidance in the structure of the system, rules and customs, how to develop a plan, strategy and basic tools. He includes “What if things go wrong?”, “Do you need a professional?”, and his “Ten Commandments” for Lobbying Congress. The list of resources is fantastic.
Too many consumer health advocates ignore insurance; this book will change your perspective. Ray Bourhis specializes in insurance bad-faith litigation. His book chronicles the experiences of real people facing heart disease, AIDS, spinal injuries, brain damage and other illnesses but are dropped by disability insurers just as they need the benefits they have paid for. He highlights insurers who are immune to lawsuits, bad press, even federal court injunctions – continuing to deny benefits to push profits. It is hard to fight an illness as you are forced to file for bankruptcy. We all need to pay at least as much attention to the systems that support us as we return to health as we do to the systems that deliver care.
A set of vivid descriptions of the experiences of dozens of uninsured Americans from across the country, interspersed with descriptions of the policies that create the American health system that allows one out of seven Americans to go without any coverage. The book alternates between compelling accounts of real people’s lives and user-friendly descriptions of the history of health care in America and the current sorry state of affairs. The inescapable, and disturbing, conclusion is that we are all potentially "one illness, one family crisis, one pink slip away from sliding into a lethal vortex of ill health, medical debt, and marginal employability." The last chapter comes to obvious but uncommon recommendations to remedy the situation, for all our sakes. A quote from Katherine, an uninsured emergency room nurse in Mississippi, sums it up, "Florence Nightingale was one of the first people to understand the importance of good nutrition, fresh air, and cleanliness in medical recovery. . . . She believed that hospitals just cannot be kept clean enough over the long term, so that every twenty years, they just need to be burned down and rebuilt . . . And that's what I have to say about the health care system. It needs to be burned down and rebuilt." Highly recommended.
Everyone in the office groaned when they saw the title of this book. But at the risk of seeming like a geek, anyone involved in advocacy should read this book. Too often advocates spend all their time on assembling and analyzing data and without thinking about the equally important aspect of making their case easy to read and understand. This is especially critical in complex issue areas like health care. Your painstakingly collected statistics and carefully worded arguments will be the proverbial tree falling in the forest if no one reads it or understands it. This book explains how to present statistical information in engaging ways that add to understanding. He addresses the nonsense that graphics are only for unsophisticated readers; many experts will tell you that much information can only be understood graphically. For instance, a list of hospital bed capacity may seem sufficient for a state’s population on its face, but a map of the data could show areas of significant shortage. A classic study of the outgoing Congressional mail (franking) to constituents from 1967 to 1972 showed a steep increase just before elections. That relationship, invisible in a table, becomes clear in a time-series graphic.
This book is about how we think – that often the best ideas come into our heads in a flash. We often can’t say how we got to the decision, but these quick decisions are often the right ones. The author argues that we should embrace the way our brains work and rely on quick decisions more often. He also dissects exceptions to the rule - occasions when quick decisions were not accurate or wise - and how to distinguish the two.
A fascinating look by an unorthodox economist at questions like if drug dealing is so profitable, why do so many drug dealers still live with their moms, and what effect does cultural differences in baby names have on future achievement. (Answers – drug dealing is very profitable only for those at the top of the organization and cultural differences in baby names alone have little impact on future success.) The authors test our intuitive beliefs about cause and effect in social issues with objective analyses of available data, with some surprising results. The book helps you look at things differently, challenge assumptions that may seem extremely reasonable on their face, obvious even, but eventually untrue. If you liked The Tipping Point and The Wisdom of Crowds, you will love this book.
Simple techniques to generate ingenious solutions to problems - Why not have telemarketers pay you for your time when they call? Why not sell a mortgage that automatically refinances when interest rates drop?
"Long ago it was said that 'one half of the world does not know how the other half lives.' That was true then. It did not know because it did not care." – Jacob Riis
In the last half of the 1800’s many reformers were working to educate middle class New York City about dreadful conditions faced by over a million immigrants crowded into only a few blocks of tenement slums on the Lower East Side. But the 1887 invention of flash photography allowed Jacob Riis to graphically represent those conditions, rather than rely on written descriptions. How the Other Half Lives, with its dozens of stunning pictures, was an instant bestseller. In response to this book, standards were enacted and enforced to make housing safer and healthier and child labor and sweatshop reforms passed.
The fascinating premise of this book is counterintuitive at first – experts know less than large groups of people and crowds are better at predicting outcomes, finding solutions to problems and fostering innovation than the elite few. But the author makes a strong case across fields from popular culture, science, military history to political theory. While this idea sounds dry, the book is anything but. Questions considered include Why is the line you are standing in always the longest?, Why is it that you can buy a nut anywhere in the world and it will fit a bolt bought ten thousand miles away? And Why is network television so awful? It will make you approach problem solving completely differently, along the lines of The Tipping Point. This idea has a lot of appeal for solving the dilemma of America’s very complex, very dysfunctional health system.
Researchers who take a scientific look at what works to motivate people to vote on Election Day. Much of accepted wisdom on what is effective has never been tested in controlled experiments (what candidate is willing to leave a significant number of voters in a control group without mailings, phone calls, etc.) and expensive campaign consultants often have financial interests in advocating certain voter contact mechanisms. This will be our bible this summer as we conduct our voter registration drive among uninsured and HUSKY consumers.
Mary Mallon, demonized forever as a self-centered monster indiscriminately spreading disease, was in fact misunderstood even in her own time. She was a poor Irish immigrant who made her living as a private cook to wealthy families in the early 1900’s, and was apparently a very good cook. She was chased, institutionalized against her will, released and chased again. A fascinating story of public health, feminism, poverty, ethnic discrimination, and individual responsibility.
"I feel there's gonna be a change, but we're the ones gonna do it, not the government. With us there's a saying, "La esperenza muera ultima. Hope dies last." You can't lose hope. If you lose hope, you lose everything. - Jessie de la Cruz, retired farm worker Hope Dies Last is a remarkable volume of oral histories that sheds light on the difficult but essential challenge of finding hope in uncertain times. These interviews contribute to an alternative history of the American century - one created by all those working for a better tomorrow - from civil rights activists to undocumented Guatemalans to death row inmates.
Portraits of working Americans struggling daily to escape poverty. The intensity of the struggle and the incredible odds lined up against these families are stunning. The portraits include farm workers, garment workers, illegal immigrants, and cooks in dead-end jobs that are often dangerous, compromise their health, living in decaying housing with pitiful educational opportunities for their children. The book presents the portraits within the policy context that perpetuates the problems and policymakers who ignore the needs. A difficult book we should all read.
The Spirit Catches You and You Fall Down is an extraordinary journey into the dichotomous world of the Hmong community and modern medicine. Located in Merced, California, the book details the true-life tale of Lia Lee, a three-month-old girl who suffers from epilepsy and the strained relationship between her parents, who don’t speak English and engage in the local customs from their original hill country of Laos and the sophisticated hospital staff. Lia Lee, the 13th child of Nao Kao Lee (father) and Foula Yang (mother) was the first child to be born in a modern hospital in the United States after immigrating as refugees. The 12 other children had been delivered on a dirt floor in Laos and Thailand by only Foula Yang, in which she was proud to have caught each one with her own hands. When Lia is first diagnosed with epilepsy, Lia's parents arrange for animal sacrifices and prepare herbal remedies from herbs grown in the parking lot behind their apartment complex. As Lia's condition worsens however, her parents and doctors blame each other for her disintegrating state of health and ignoring each other’s wishes. Similar to Mama Might Be Better Off Dead, the book is written by a journalist who offers cross-cultural reporting and the perspectives of both the parents and the physicians. Apart from the language difficulties, many misunderstandings ensue related to the ideas of Western medical cultural and the strong Hmong cultural values and bonds to tradition. Yet Fadiman aptly transforms the story of a single Hmong child to the larger difficulties straining the medical community and the ultimate anticipation that one day such complex relationships may be resigned.
A wonderful book that collects the experiences of nine mothers raising children with special needs, including autism, Down syndrome, cerebral palsy, ADD and multiple disabilities. It describes the struggles and the joys of parenting a special child, but unlike other books, this is meant for providers and others who must understand what families need, and just as importantly, what they don't need. A quote from one mom says it well, "Listen, just listen. That is my biggest fear - people won't listen." Chapters include Being Heard, Feeling Understood, Life Amplified, Chronicity, Coping, and Healing. A friend (a physician) I sent it to said, "I received it yesterday and last night I couldn't put it down until I finished it. This book should be shared with so many people." I agree.
The author agrees to spend a year shadowing her sister, who has mental retardation, on her daily odyssey riding city buses. She learns that her sister lives an extraordinary life in a fascinating and complex community of riders and drivers. Not only does she get to know her sister better and understand her disability, she also learns to open her mind and to reconsider her assumptions and values.
Okay, this is a movie, but we're including it in the Book Club anyway. The story is about an everyday father when his only son collapses unexpectedly, they find that he needs a heart transplant. While enduring the anguish of his son's illness, he learns that because his hours were reduced at work, he is now underinsured and his son's transplant is not covered. The movie created a great deal of press and public discussion about the realities of life and death for Americans without adequate coverage. Many Americans still believe the myth that medical care is available to anyone who needs it, regardless of ability to pay. The DVD version of the movie includes a documentary, Fighting for Care, that addresses the controversy. The DVD version also includes pop-ups that trigger one or two minute short videos on illustrations of the trials facing patients in need of a transplant or the difficulties in accessing care without adequate insurance coverage (as well as cast bios and commentary from the director). Director Nick Casavetes' 13-year-old daughter has had four operations to correct a congenital heart defect, all fully covered by insurance. The film created a discussion of the uninsured outside the usual wonky circles.
I hesitated to include this book on our list -- it is not scintillating reading. The first 150 pages are a dry recitation of the history of racism within science (eugenics, the Nazis, etc.). But the last two chapters, The Race and Disease Fallacy and What Can or Will We Do Without Race are worth reading. Molecular biologists have known for over a decade that race has no genetic meaning. There is more genetic variation within groups than between them. Race is a cultural and social construct. However, the incidence of many diseases and health outcomes vary by race. The author sort of leaves us there, identifying only institutional racism as a cause. Cultural differences in lifestyle, differences in trust of traditional medicine, and socioeconomic causes are hardly mentioned. Overall, I'm including the book because it raises an important issue.
An interesting perspective on Connecticut state government - includes all three branches, lobbying, and political culture. An interesting history of state and federal tensions, specifically as they have played out in Connecticut. A wonderful source for understanding Connecticut governmental history from the Fundamental Orders of 1639 to Sheff v. O'Neil. One might take issue with some characterizations, but comments on the extraordinary strength of the executive branch, both formally set in the Constitution and statute and informally in the current environment, are accurate and refreshingly honest.
The story of four generations in a poor Chicago African-American family managing through the diseases that are too common in America's inner cities. Their struggles with the obtuse medical care system meant to keep them healthy is disturbing. An example - a description of a doctor's frustration with a patient allergic to cats having severe health problems but refusing to give up the family pet - she finally tells him that if she gives up the cat, there will be nothing protecting her children from the rats.
Two reporters view of the Clinton health plan, what worked and what didn't. The authors had extensive access to "insiders" during and immediately after the story. There are several lessons, but one that sticks is how health policy often has nothing to do with health or policy.
A fascinating analysis of how some ideas, products, messages and behaviors spread very quickly, like an epidemic; such as "Where's the beef?" The author looks at which ideas don't spread, despite great effort and sums of money. He uses examples from Paul Revere to Sesame Street and Blue's Clues. I bought this book thinking of HUSKY outreach, but I keep thinking of how it applies to hundreds of other topics.
A journalist (and former scientist) tried to live on post-welfare reform unskilled job wages for a month in each of three different cities the summer of 2000. Among her jobs were waitressing, house cleaning, hotel maid, nursing home aide, and selling women's clothes at Wal-Mart. She accepted whatever jobs were offered and found the cheapest housing available. She allowed herself a car (she only paid for gas out of her wages) and enough money for a security deposit and first and last month's rent. She is educated, healthy and did not have young children. Despite these advantages, she barely squeaked by in each city, losing most of her original money over the month. And this was during a time of general prosperity, with Help Wanted signs in every window. The bone-numbing fatigue and mind-numbing routine was depressing but her take on managers, interviews and corporate America are pretty funny.
This 1984 Pulitzer Prize winning history chronicles the rise of the medical profession in the United States - from its lowly beginnings through the development of a vast healthcare system - stopping just short of the advent of Managed Care. A highly readable resource for anyone interested in how we got where we are today in healthcare.
The classic simple and user-friendly guide to understanding numbers and statistical assertions in health-related reporting. The book helps answer three basic questions about claims – What can I believe? What does it mean? And How can I explain so others understand? Sections include polls, scientific studies, disease outbreaks, evaluating managed care plans, focus groups, and health information on the Internet.
An unbiased, frank look at how statistics are manipulated - both intentionally and not - to support specific points of view. The book helps readers think critically about statistics cited (or "spun") in reports from the media, government, advocates, researchers, or industries. The author outlines how statistics can be distorted and misinterpreted, and how to be an educated consumer of statistics. One of our favorite soapbox issues here at the Project, the crushing need for sophisticated consumers of information - among voters and other stakeholders. Good policy comes from good information.
If I'd had professors like John Allen Paulos, I might have stayed a math major. With a very entertaining style, he berates most of us in our innumeracy, or inability to deal comfortably with the fundamental notions of number and chance. He notes that the condition afflicts many otherwise very well-educated people, and appears to be no source of shame. The book includes fascinating real-world examples including stock scams, choice of a spouse, astrology, sports records, sex discrimination, UFOs, insurance and law, psychoanalysis, lotteries and drug testing. His preface addresses the 2000 Presidential election and the OJ Simpson trial. He also outlines that there is no special talent required for mathematical literacy. "Almost everybody can develop a workable understanding of numbers and probabilities, of relationships and arguments, of graphs and rates of change and of the ubiquitous role these notions play in everyday life." Those skills are particularly important to make sense of complicated and conflicting health risks - for example the "typical tendency to equate the risk from some obscure and exotic malady with the chances of suffering from heart and circulatory disease, from which about 12,000 Americans die each week."
The book begins with a quote from Florence Nightingale, " To understand God's thoughts, we must study statistics, for these are the measure of his purpose." The book details the history of the study of statistics and its extraordinary impact on our lives. It begins with a description of a summer afternoon tea in Cambridge, England in the late 1920's. The guests were university professors and their guests. One lady insisted that she could tell by tasting a cup whether the tea was poured into the milk or milk was poured into the tea. The guests were skeptical, so an experiment with controls was constructed to test the lady's contention. She identified every cup perfectly. The book gets a bit dry at times, but has fascinating points as well.
The classic survives -- unfortunately it is as relevant today as it was in 1954. Also beginning with quotes, my favorite is by Artemus Ward, "It ain't so much the things we don't know that get us in trouble. It's the things we know that ain't so." Reading the chapter on statisticulation (misinforming people by the use of statistical material) brings dozens of examples to mind.
If you have a book that should be included on this list, let us know at firstname.lastname@example.org