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Presenting Data and Information
My Designer Prescription for Medicare's Ills
By Leslie Smolan
Sunday, January 22, 2006; B02
When I read the headlines last week about seniors lost in the maze of the new Medicare prescription drug plan, I didn't just see them as further evidence that the confusionridden, fraud-laden, money-squandering Medicare system is headed for disaster. The news also bolstered my conviction that most of Medicare's failings can be tied to a single "disease": disastrously poor information design. Designing information is a large part of what I do for living. Designers like me try to simplify complex information for a time-starved, information-hungry society, whether that means helping you sort through the investment options in your 401(k) plan or figuring out how to make the most of your visit to the Louvre (regardless of what language you speak or your familiarity with a complicated piece of 16th-century architecture).
Despite all my experience, I recently fared no better than the average Medicare patient when it came to understanding a system that seems almost deliberately obscure. Last year, my elderly father became chronically ill, and I was forced to navigate Medicare's labyrinths to manage his care. Every step of the way in my long and frustrating dealings with the system, from finding a nursing home to tracking down my father's medical records to reconciling the endless stream of bills, I found that the information I needed was either unavailable, unedited or unintelligible. Clearly, our healthcare system is sick, and unless we focus on curing it before the first baby boomers become eligible for Medicare in 2011, it is likely to be so overwhelmed that it will either cease to provide any reasonable standard of care - - or cease to exist. What follows is my modest proposal for saving Medicare. As is the case with any ailing patient, the cure depends on making the right diagnosis.
Diagnosis: Information Discontinuity
Symptoms: My father's predicament began with a bad fall that resulted in a cerebral hemorrhage. As he was air-lifted to the hospital, my mother, overwhelmed by the swiftness of events, had to immediately produce a health directive, living will, power of attorney, Medicare number, secondary health insurance policy and prescription drug card. These separate documents all come in different formats and are produced and distributed at different times. Even if you have them all, finding the latest version of each can be a challenge. Imagine if you had to provide bank balance, credit history, utility bill and birth certificate every time you made a credit card purchase. The wasteful, labor-intensive process of repeatedly generating and collating the same information became a recurring theme throughout the year ahead.
As my father was moved from hospital to nursing home and back to the hospital again, I was shocked to discover that basic information about his condition and treatment did not always make the journey with him. Every healthcare provider in the Medicare system maintains separate records; there is no universal data bank that they all can access. This absence of continuity in the flow of information often resulted in an absence of continuity in care, as when my father's recurring urinary tract infection was misdiagnosed . . . as a stroke!
In addition, Medicare, the insurance companies and the doctors all have different computer programs, making cross-referencing bills and payments nearly impossible. The secondary insurance company pays its portion once Medicare has paid. Despite Medicare's approval, we began to get "scare letters" from the secondary insurer saying they would deny claims unless they got certain information. It turns out that the insurance company's computer system accommodates fewer characters per line than Medicare's, so half the information dropped off when Medicare passed on the claim.
Treatment: From the moment someone enters the Medicare system, all information abut his illnesses and treatment should be entered in a confidential, centralized database to which the patient himself (or a designated representative) grants access. Any number of entities could be in charge of the database, from the government itself to an independent third-party provider. With a central database, the necessary information will always be at hand when the patient, doctor or even a pharmacist needs it. When you consider how easy it is for anyone to obtain your detailed credit report, it's clear that the technology exists to remedy this information-sharing crisis (and also, sadly, that our priorities are out of whack).
Diagnosis: Information Overdose
Symptoms: We began to get pounds of paper from Medicare, pounds more from the secondary insurance company, not to mention individual bills from cardiologists, anesthesiologists, oncologists, radiologists, psychologists, urologists, helicopter and ambulance services and hospitals. They contained page after page of doctors' exams and procedures: electrocardiograms, echo exams, Doppler echo exams, Doppler color flow add-ons - - and on and on. A quick scan of the individual costs was frightening: $980, $692, $575, $331, $133, $468, $107, $214, $107, $214 . . . and 37 more similar charges, all on the first statement!
Payment can often take 60 to 90 days. Then Medicare passes the bill on to the secondary insurer, which adds another 30 days at the very least. After months of waiting for your portion of the bill, you often end up with a balance so small that it hardly seems worth the effort to bill it. An additional problem arises because many senior citizens, often not in the best of health, and sometimes suffering from short-term memory loss, are inclined to pay the initial bill - - including fees that Medicare and the insurance company are responsible for - - rather than worry about being delinquent. As a result, many are overpaying, ashamed to let a bill sit "unpaid" for 90 days.
Treatment: Here again, the solution is already a part of our daily lives. Take a look at your year-end American Express statement. Using chronology, categorization and clear presentation, you can see your spending "history" at a glance. A comparable system of itemization for Medicare would save patients and doctors countless hours of work.
Diagnosis: Information Dysfunction
Symptoms: After my father had been in the hospital for 30 days, the social worker assigned to his case informed us that his stay had "expired" and that he needed to be discharged to a "sub-acute" facility (that's Medicare-ese for nursing home) the very next day. To help us find one, she provided us with a barely legible photocopy that offered nothing more than the names of facilities and their addresses. So I went to Medicare.gov, where the primary information available was a list of violations for each facility. In the absence of usable information, I resorted to old-fashioned personal networking to determine where my father would go next.
Treatment: One of the reasons the available information about Medicare services, procedures and billing is so daunting is that there is almost no effort to regulate the amount of information provided, deliver it in an easily understood format and communicate it in plain English. A fundamental principle of information design is to give the user the ability to make comparisons. This requires that the information be relevant, straightforward and easily verified. Beyond this, whenever possible, customization should be built into the program, allowing users to sort data based on their individual needs. Today's sophisticated Web sites show how far we've come in this regard. Take Amazon.com, where not only can you read consumer reviews of products you are interested in, but the site actually greets you by name and suggests books you might like. Both on and offline, the systems for providing relevant, contextualized information exist. Two great printbased examples are the daily stock market tables and the nutrition labels for packaged goods developed by the Food and Drug Administration. The latter is a universal format for information that was developed to allow people to compare content and make choices based on their individual needs. The fact that the FDA labeling system has been adopted as an international standard is a testament to its success as information design.
Good information design is clear thinking made visible. Applied to the Medicare system, it would make administration and oversight by Medicare professionals easier, allow for easier retrieval of patient records to ensure continuity of care, and simplify billing processes to facilitate prompt, accurate payment for services.
The question is: Who should lead the charge? It's entirely possible that private industry will take up the cause and do an end run around the government, as FedEx has done with the U.S. Postal Service. Many corporations and entrepreneurs have already identified Medicare as a profitable area to explore. But I believe the government itself is best-suited to handle this crisis - - not just because Medicare is one of the few remaining government programs we count on to support us, but because the government actually has a decent track record with information design. In addition to the FDA nutrition label, there is a healthcare program administered by the Department of Veterans Affairs, which switched recently to an electronic records system and has since reaped the benefits in terms of improved care and a 50 percent reduction in costs per patient.
My father has finally returned home after more than a year in rehabilitation facilities, and the bills are finally beginning to trail off. But my experience with the Medicare system has shaken me so greatly that I am determined to speak out about its problems, and potential solutions to them, whenever and wherever I can. Ultimately, if we are unwilling to embrace some kind of universal health coverage, then an overhaul of Medicare's information design is essential. We have the tools to transform Medicare into an efficient, workable and humane program. The government simply needs to channel all of the time, effort and money it is currently expending on finding ways to cut benefits, and invest them instead in meaningful reform. Author's e-mail: Leslie@carbonesmolan.com
Leslie Smolan is head of the Carbone Smolan Agency in New York. She and her information designers have helped to demystify mutual funds for Putnam Investments, develop the year-end statements for American Express cardholders and orchestrate the movement of visitors through the Louvre.
-- Edward Tufte
The UK National Health Service (NHS) is in the process of creating an IT system intended to meet many of the sorts of problem to which Leslie Smolan has referred. It may interest her to see the NHS Connecting for Health Business Plan 2005-6. This colourful 56 page download can be found on www.e-health-insider.com . The Plan may seem to start out with a PP approach (mission etc.) to get the reader orientated, but then goes beyond the headlines to delve into the detail of the Product, and bring it to life. As an attempt to explain and simplify a complex process, it seems user-friendly. Philip Kipping.
-- Philip Kipping (email)
Is the NHS system the same one discussed below?
From the link above:
The Government is to scrap the NHS Modernisation Agency (MA), the agency charged with delivering the change management programme that is meant to accompany the new computer systems to be delivered by the National Programme for IT (NPfIT).
The MA, which has 760 staff and a ??230 million budget, was meant to be responsible for helping local trusts deliver the change management agenda associated with the NPfIT, but the DH has confirmed that it will be scaled back to about a fifth of its existing size as part of a Whitehall efficiency drive.
Set up less than three years ago to lead reform in the health service, revive failing hospitals and spread best practice the MA will be replaced by a new central organisation in April 2005.
Explaining why the decision had been taken the DH explained that the MA had done its job. "Modernisation is now embedded in the NHS with many front line staff having gained the skills to improve services." It added that the time was right "for modernisation to move into its next phase".
It is not clear yet whether the drastically slimmed down successor to the MA will still have national responsibility for ensuring delivery of the change management and business process re-engineering programmes necessary to realise the benefits of over ??5 billion investment in new NHS IT systems.
-- Tchad (email)
A doctor I worked for during Hurricane Rita said that after Hurricane Katrina she and her colleagues used ihealthreccord.org to build patient records in the shelters.
-- Niels Olson (email)
The answer to Tchad's question is yes, the same NHS (still British taxpayer-funded), but its MA work has evolved into the Connecting for Health program.
-- Philip Kipping (email)