By Peter W. Carmel
As physicians, our primary concern is ensuring the health and safety of our patients. The Food and Drug Administration has offered a new concept to make more prescription drugs available over the counter (OTC). Proponents claim it could improve patient health and outcomes, reduce patient costs and promote proper medication use. We are skeptical that it would achieve any of these goals.
The American Medical Association is concerned about patients taking certain drugs without physician involvement — especially patients with chronic diseases. No evidence has been offered that the innovative technologies underpinning this concept would actually allow patients with high blood pressure, high cholesterol, asthma or migraine headaches to self-diagnose and manage these serious chronic medical conditions safely on their own.
As a chronic condition evolves, treatment changes are often needed from a physician. Without physician involvement, patients might take the wrong medication or dose for their needs, potentially causing harm. Self-diagnosis and treatment conflict with the care coordination and disease management that new health care payment and delivery models are trying to achieve.
Contrary to claims that this will save patients money, out-of-pocket costs for insured individuals, including those under Medicare, would increase for drugs switched from prescription to OTC status because patients would need to cover the entire cost themselves. Higher costs would make it harder for patients to afford the medication they need.
Patients are more likely to take the medicine they need when they need it while under a doctor’s care. Physicians are one of the most important motivators in getting patients to take medication as directed. Any proposed expansion of OTC medications needs to preserve, not undermine, the patient-physician relationship.
Patients rely on physicians to provide sound diagnosis and treatment information and to help them meet their unique health needs. Expanding many prescription medications to OTC interferes with that important relationship without offering any real benefits to improve patients’ health or reduce their costs.
Peter W. Carmel is president of the American Medical Association. This post first appeared in USA Today.
Filed Under: OP-ED, THCBTagged: AMA, chronic diseases, FDA, Health Outcomes, OTC drugs, out-of-pocket costs, Peter W. Carmel, physician involvement, prescription medication, self-diagnosis May 13, 2012
By Rob Lamberts, MD
Don’t assume anything.
Assumptions can kill. Assuming something regarding your own health care can cost you money, cause you pain, and yes, even kill you. Here’s my list of potentially harmful assumptions:
1. No news is good news
If you have a test done and don’t hear anything about the result, do not assume it is fine. This assumption kills people. I have too many patients with too much information flying at me every day for me to catch every important detail. Sometimes things are missed, but sometimes the results don’t come to our office. We have trained our patients to expect an email or letter with their results within a certain amount of time, so they sometimes call when the test results don’t come in. I tell them to do so in the clinical summary sheet I hand out at the end of each visit, but the assumption remains.
Always know what tests are being run, and always get the results of those tests (in writing, if possible).
2. The doctor will think I am stupid
I often have patients apologizing to me. They apologize when they have a “weird” symptom, when they “ask too many questions,” when they stop taking a medication due to side-effects, and when they are really, really worried about something. They seem afraid that I am going to roll my eyes and think of them as “one of those patients” – the kind that I complain about to my office staff.
I hate it when people apologize. Apologies assume there is some standard or expectation that a person is not meeting, and the only expectations that I have of my patients is:
a. they have or want to prevent medical problems
b. They want my help.
Why should I get mad at people for either of these things, as it is the job of a doctor to help people who need them. I know there are doctors out there who treat patients like bad kids or like they are morons, but those doctors are out of step with reality. They are the morons. I don’t apologize to the barber that my hair grew. I don’t apologize to my accountant for having tax questions. Understand your position as the paying customer; get what you paid for.
One warning on this one: viewing yourself as a customer cuts both ways. If you have the right to get what you pay for, the doctor has the right to be paid for what they give you. People often think docs should do what they do out of pure charity and kindness, which is wrong. I may expect the mechanic to be kind and charitable, but I should also expect to pay them for what they do. This means that expecting your doctor to spend 30 minutes with you and only charge you for a 5-minute visit is not fair to the doctor (or his wife and kids).
3. Doctors don’t want to be questioned
I hope I am not unusual in this, but I would rather have patients question what I do than to accept everything I say.
Patients’ questions help me in several ways. First, they let me know what I am not explaining well enough. I think people follow instructions better when they understand them, so if you don’t understand what I said, ask. Second, questions build my credibility. If I can explain the reason for my recommendations, I am more trusted. If I fear questions, then it looks like I am hiding something. Third, and most importantly, questions sometimes lead to better care. Sometimes patients ask me about something I haven’t considered. Sometimes the questions make me think things through and see my faulty logic. Sometimes questions make me look for information and learn something.
Good doctoring has a whole lot of teaching in it. Teaching is not a goal in itself, however; the goal is to get the person being taught to understand. If you don’t understand what’s being done, why you got a prescription, or what your diagnosis is, ask. If you wonder about another possible diagnosis, ask. If your doctor doesn’t like you asking questions, ask for a copy of your records and find another doctor.
4. Standard care is the right care.
Much of what doctors do is based on, or at least consistent with science; but a lot of care goes on despite that science says otherwise. A group of physician organizations recently banded together and published the Choosing Wisely Campaign, a set of “things patients and physicians should question.” The groups urge doctors and patients to choose care that is:
Supported by evidenceNot duplicative of other tests or procedures already receivedFree from harmTruly necessary
Here’s a sample of things done frequently that the Choosing Wisely campaign suggests questioning:
Getting an x-ray for people with uncomplicated back painUsing antibiotics for sinusitis lasting less than 7 daysRoutine EKG’s on average (lower-risk) peopleRoutine screening stress-testsUse of anti-inflammatory drugs (NSAID’s) in people with high blood pressure, heart disease, kidney problems, or diabetes.
There are many more recommendations on the site, but the reason this campaign was launched was because of how often these rules are broken. I must admit, I have had to change my habits in the light of some of these recommendations.
5. My doctors talk to each other
I am a primary care doctor, so I am supposed to be the hub of a patient’s care. If a patient of mine goes in the hospital, has surgery, sees a specialist, or goes to the emergency room, I am supposed to be notified. Unfortunately, this is probably not even true in of 50% of these situations. Even when patients ask specifically to have records sent to me, they often aren’t there.
Specialists also have this problem, often getting consults without a clear reason. Often this is a problem at the referring physician’s end, but we have had numerous specialists turn down offers to access our records. We have also offered access to our records by hospitalists and ER doctors, only to be been turned down. Many doctors prefer to give care with only information they gather. It is rare that any doctor has all of the information that may be helpful.
An exception to this is the integrated care system run by a hospital (usually), in which doctors all share medical records. Clearly the sharing of information in that setting is better than in my world, but being under the care of a hospital gives other disadvantages I will discuss later.
6. My doctor has accurate records
Not only do I not have much of the information that comes from other doctors, but the information I do have in my records are not always accurate. The biggest culprit in our office is old information that doesn’t get taken off. It takes a large amount of time to make sure a person’s records are accurate, and there are no insurance companies willing to pay for improved accuracy. So accuracy only happens when doctors take time away from reimbursed patient care and work to organize the records. Again, our office makes a valiant effort at keeping things accurate, but I have found that it takes a huge amount of time, planning, and energy to keep records updated.
I personally don’t think this will change until the patient becomes responsible to keep their own records. Nobody will ever care about a patient’s records as much as the patient does. In the mean-time, I recommend that you keep an updated list of your medications, surgeries, problems, and even your family/home situation and bring it with you to visits.
7. I will be notified when things are due
Are you due for a colonoscopy, thyroid lab tests, a follow-up CT scan, or a diabetic eye exam? Most people don’t know exactly when things are due, and many assume they will be notified when this is the case. Gastroenterologists do often call when the follow-up colonoscopy is due, and mammography facilities sometimes call for a follow-up, but these are exceptions to this rule. Doctors often say “repeat test in six months,” and then expect the patient to call to schedule after six months. Even patients coming into the office may not be reminded of overdue tests, mainly due to the disorganization of medical records (#3 above). If you think you might be due for something, ask. Even asking the question, “are there any tests or labs I am due to get done?” can help remind providers to check for these things. Remember, it is incredibly hard to keep records organize, so don’t assume your doctor’s office will act anything like Jiffy-Lube.
8. Hospitals care
The commercials boast of how local hospitals are “there for you when you need them most,” and “your advocate for your health.” This is horse hockey. The people in the hospital may be caring and kind. The doctors, nurses, and even administrators may want you to be healthy. But the hospital is a business which requires people to be sick and have lots of procedures done to be profitable. Most health care dollars are spent in hospitals, and many times those dollars do no good to the patient. I’ve seen end-stage cancer patients get heart catheterization, people with dementia spend weeks in the ICU, and countless other procedures are done with no benefit (other than income to the hospital).
Don’t be fooled. Your goal is to stay healthy and stay out of the hospital; your doing so is bad for the business of hospitals.
9. More is better
I have patients frequently asking for tests they don’t need. Shouldn’t people get yearly lab panels? Shouldn’t kids get their cholesterol checked? What about those screening mobile tests for carotid artery plaques or PAD? It’s hard to make my patients understand that in saying “no” to tests, I am being a better doctor. I talked about this in an earlier post, but it bears repeating. If someone has a high chance of having a condition, screening for it is useless (doing a strep test on someone with an obvious strep throat). If someone has a very low chance of having a condition, screening for it won’t reduce the risk (CA-125 screening for ovarian cancer, for example). Having more information is often not helpful, can lead to unnecessary worry or further testing, and costs a lot of money for no gain. I don’t want more information, I want the right information.
10. New is better
What about that new drug advertised on TV? What about the surgery done by robots? Should I take that antidepressant for pain? Do I have low-T? Should I go to the hospital with the brand new 200 gazillion dollar heart pavilion? Always look at advertising with a skeptical eye. The main reason businesses spend money on advertising is that they want to make more money when you use the thing they advertised. The 200 gazillion dollars for the heart pavilion has to come from somewhere. There’s a reason why you first heard of “low T” on television and not from your doctor: the company who wants to fix your T wants your money. Robotic surgery is surely cool, but it is also really expensive to buy that machine, and hospitals need you to want the “cool” surgery so they can pay for those machines.
Sometimes “new and improved” is a truthful boast, but usually it is a means into your wallet.
Rob Lamberts, MD, is a primary care physician practicing somewhere in the southeastern United States. He blogs regularly at More Musings (of a Distractible Kind). Where this post first appeared.
Filed Under: THCB, The Insider's Guide To Health CareTagged: Assumptions, Care coordination, Checklists, Choosing Wisely Campaign, doctor/ patient relationship, patient-doctor communication, personal health records, primary care, recommendations, standard care May 11, 2012
By JOSHUA ARCHAMBAULT
Are the House and Senate giving us a false choice for how to control health care costs in Massachusetts? Aren’t there other options?
A few major themes have emerged from the two payment reform proposals and highlight the fact that they fail to align incentives for patients to be more involved in the purchase of their health insurance and their health care.
For example, even with full transparency of cost and quality (which is a huge lift on its own) for many patients, high-cost still correlates with higher quality in medicine. A recent report from Attorney General Coakley proved this theory wrong, but simply providing patients with cost data without placing the right incentives in their health plan to choose the low-cost high-quality provider will result in many selecting the most expensive care. As a result, these proposals will fall short of sustainably bending the cost curve.
There is another way for the Commonwealth- patient-centered health plans, see Health Affairs($) for national savings estimates. The impact would be significant in Massachusetts as less than 3% of residents are on a form of these plans, compared to 13% nationally.
Any reform of payment methods must be aware of limits on the state’s power to regulate the 53% of Massachusetts companies that are self-insured (and are therefore regulated by the federal government), and of course Medicare beneficiaries in the state. The bills do not touch long term care, prescription drugs, hospital fixed costs, health plan reserves, medical devices or insurance overhead. So what does that leave us, an awfully small pool out of the roughly $60B to cut from. From a practical standpoint, are we looking to “fix” our health care problems by laying off workers or severely reducing their pay? That is one of the few options left. Is that a long-term sustainable and innovative approach?
The media and most stakeholders have missed this point completely. Instead of debating what arbitrary reduction in growth we would like to see (if we are just making up numbers I propose GSP minus 10%). We need to be realistic and have a debate about how these proposals will play out in implementation, the unintended consequences, and how stakeholders will react to the incentives in the bill. (For example, how do we deal with those living in Massachusetts but receiving their care in another state. Or the other way around.)
My concern is that both houses of the legislature will pass their versions with some minor tweaks, and then in conference committee, behind closed doors and with lots of industry lobbying, a “compromise” will be struck taxing both insurers and providers.
From a consumer and long-term health sector perspective, this will be a raw deal.
It is built on two flawed assumptions. First that new taxes, assessments, and surcharges will not be passed onto consumers in some form. Second, that the answer to our health care problem is chasing previous flawed government intervention with more flawed government intervention. These two assumptions should not be the terms of debate for payment reform in Massachusetts. Is there a third pill to consider?
Joshua Archambault is director of health care policy at the Pioneer Institute where this post first appeared. He is also the co-author of The Great Experiment.
By Jeff Bussgang
When I entered the VC business 10 years ago, I tried to keep thinking about venture capital as a business, where the key focus area was on meeting the needs of our target customers — entrepreneurs and limited partner investors.
In the case of entrepreneurs, those needs have changed radically in these last 10 years. The surge in seed investing over the last few years has been well-reported and analyzed. With advances in cloud computing, open source infrastructure, development tools and general “Lean Start-Up” techniques, entrepreneurs need less capital than ever before. And when entrepreneurs’ needs change (i.e., requiring less capital), smart investors adjust to meet those new needs. Hence, the rise of angels, super-angels, incubators, accelerators, micro-VCs and VC-led seed programs.
But as the “Great Seed Experiment” (as my partner, Michael Greeley, calls it) matures, a new trend is emerging. Entrepreneurs are beginning to learn the difference between what I’ll call Passive Seeds and Activist Seeds. And entrepreneurs are learning that the difference between the two, although somewhat subtle, matters greatly.
Passive Seeds are when a VC invests a small amount of money (for a $200-500M mid-sized fund, typically $250k or less, for a large $1B fund, perhaps $500k or less), to achieve a very small amount of ownership (typically less than 5%) to simply create an option to participate as a more meaningful investor in the future. Passive seed programs get most of the press attention because of their sheer volume.
When you ask venture capitalists about their seed programs, many will brag about how many seed investments they have made (20-40 per year is not uncommon) and how wonderful it is that so few of them “graduate” to become series A investments (perhaps 10-20%) because it shows how discriminating they are. Other characteristics of passive seeds is that one or two of the partners can make the decision to invest, rather than requiring the entire partnership to approve, and the due diligence is very light. Additionally, in a passive seed round, VCs don’t mind if 3-5 firms participate, as opposed to more tyically 1-2, and each VC partner can juggle a dozen passive seeds at any given time. Sometimes there are more VC investors than employees in a passive seed!
But entrepreneurs are starting to wise up. The conventional wisdom has emerged that Passive Seeds from VC investors are bad for start-ups and entrepreneurs. VCs who make passive seeds are not typically engaged enough in the business to add meaningful value. Further, they send a bad signal to the funding market when they don’t invest in the Series A, thus creating inappropriate leverage on the entrepreneur at the time of the Series A decision.
Seed investor/venture capitalist/entrepreneur Chris Dixon has written extensively about this issue, and I couldn’t agree with him more when he declares, based on his discussions with experienced founders, “there is no room for debate” on the issue.
Activist Seeds VC investors are a different story (which Chris acknowledges, although uses different language). From the VCs perspective, an activist seed is when the firm commits the full time, resources, and energy into the investment that they would do with a Series A. From the entrepreneur’s perspective, they truly wants to raise less capital because of all the positive Lean Start-Up trends noted below, but wants the active involvement of a value-added VC firm.
An activist seed from a VC is typically more like $250K-$1 million and the ownership is closer to 8-10%. The full partnership approves an activist seed and the due diligence, although abbreviated, is thoughtful and serious. The firm gets to know the business and the entrepreneur better and thus makes a deeper commitment in making the investment.
The conversion rate of an activist seed into a larger Series A is more like 50-75% and each VC partner dedicates as much time to an activist seed as they do a larger Series A. In short, an activist seed is nearly identical to a Series A, just smaller, slightly more streamlined, and informal – all appropriate for the stage of the business and the requirements ahead.
So next time you are discussing a seed round with a VC firm, figure out if their firm’s philosophy is activist or passive. At Flybridge, we firmly believe in activist seeds (two nice examples recently in the news are Crashlytics and ZestCash). Different firms have different approaches. Make sure you find out which is which, and make sure it’s a fit for your needs. Here are a few questions you can ask yourself to distinguish between the two:
Was the entire partnership engaged in the investment decision process? Did I meet with and pitch to the entire firm? This results in a greater sense of commitment and shared ownership.Did the VC open up her network and make a few value-added introductions to prospective talent, customers and business development partners? Again, this is an indication that the VC is willing to add value along the way and be more active than passive.Was the due diligence process rigorous? Do they seem to really understand my business and the subtelties around what it takes to win? Did they ask tough questions, check my personal references to get to know me better, put me in front of prospective customers?
Absent these elements, you are at risk of taking money from a VC that views you as “an option” rather than “an investment” – not a place a hard-charging entrepreneur who needs as many friends on their side as possible wants to be!
Jeff Bussgang is a general partner at Flybridge Capital Partners. He is the author of Mastering the VC Game, is an insider’s guide for entrepreneurs on financing and company-building. Follow him at his blog Seeing Both Sides where this post first appeared.
Filed Under: THCBTagged: Activist Seeds, Entreprenuership, Flybridge Capital Partners, Great Seed Experiment, Lean Start-Up, Passive Seeds, Seed investors, startup incubators, startups, venture capital May 14, 2012
By Joe Flower
I’ve been saying it for years (and in 3D and Technicolor in my new book Healthcare Beyond Reform): The Standard Model of Healthcare (the traditional unmodified fee-for-service, commodified, defined-benefit payment system) is broken and doomed. It’s fascinating to hear that even the CEO of Aetna, Mark Bertolini, said exactly that recently at a major healthcare technology conference — and that Forbes, a bastion of business and the private approach to everything, would publish an article on his remarks.
At Health 2.0 last fall, Bertolini said that he no longer thinks of Aetna as an insurance company, but primarily as an information company. This time, he made these main points:
The end of medical underwriting in the ACA, combined with other demographic, regulatory, and economic factors, made health insurers’ business model increasingly untenable.These changes will not go away, one way or another, no matter what the Supreme Court does, no matter who is elected in November. These changes are directly tied not just to legislation but to underlying demographic and economic realitiesThis is not a terrible thing. “We got pulled through the crucible against our will and have been reshaped because of it,” he said. “For most of what has already been implemented, it has been a pretty good thing.”Health insurers are unlikely to disappear. But their primary role in the future will be using new technologies to help accountable health systems serve their customers and drive out costs — and the health systems, not the health insurers, will increasingly be the face, the brand, of that improvement. “We can use technology to make it easier for the consumer. Convenience is the new word for quality.”
He is right on every count, and that is not news. What is news is who is saying it. When the CEOs of companies like Aetna and Cigna, and the CEOs of the many Blues that I have been working with in recent months, show that they understand the size, shape, and power of the changes we are all surfing together, that to me is one more clear sign that this change is happening. There will be no going back.
With nearly 30 years’ experience, Joe Flower has emerged as a premier observer on the deep forces changing healthcare in the United States and around the world. As a healthcare speaker, writer, and consultant, he has explored the future of healthcare with clients ranging from the World Health Organization, the Global Business Network, and the U.K. National Health Service, to the majority of state hospital associations in the U.S. You can find more of Joe’s work at his website, imaginewhatif.
By Peter Doshi and Tom Jefferson
In the fall of 2009, at the height of fears over swine flu, our research group discovered that a majority of clinical trial data for the anti-influenza drug Tamiflu ? data that proved, according to its manufacturer, that the drug reduced the risk of hospitalization, serious complications and transmission ? were missing, unpublished and inaccessible to the research community. From what we could tell from the limited clinical data that had been published in medical journals, the country’s most widely used and heavily stockpiled influenza drug appeared no more effective than aspirin.
After we published this finding in the British Medical Journal at the end of that year, Tamiflu’s manufacturer, Roche, announced that it would release internal reports to back up its claims that the drug was effective in reducing the complications of influenza. Roche promised access to data from 10 clinical trials, 8 of which had not been published a decade after completion, representing more than 4,000 patients from every continent except Antarctica. Independent verification of the data seemed imminent. But more than two years later, and despite repeated requests, we have yet to receive even a single full trial report. Instead, the manufacturer released portions of the reports, most likely a very small percentage of the total pages. (One of us, Tom Jefferson, has been retained as an expert witness in a lawsuit relating to some of these issues.)
This is entirely within Roche’s rights. After all, regulators have never required drug or medical device manufacturers to share their data with independent researchers or academics. They are required to show the information only to the regulators themselves, who treat the data as secret.
Some may argue that, because the Food and Drug Administration approves drugs for the United States market based on these data, this is not a major cause for concern. But the actual use of drugs is often driven by assumptions about drug safety and effectiveness put forth by articles in peer-reviewed journals (sometimes written by doctors affiliated with the drug manufacturers) and clinical practice guidelines that can be entirely inconsistent with the F.D.A.’s assessments.
In the case of Tamiflu, some of these assumed properties led to stockpiling at great taxpayer expense ? more than $1.5 billion. The F.D.A. approved Tamiflu for the treatment of influenza (on the basis that it could reduce the duration of flu symptoms by about a day); not for the prevention of transmission. But other agencies are far more enthusiastic about Tamiflu’s benefits. The Centers for Disease Control and Prevention has argued that it reduces the risk of hospitalizations and serious complications like pneumonia, citing Roche-authored papers. The Department of Health and Human Services, also citing Roche, assumed in its national influenza pandemic plan that Tamiflu would cut complications. And the World Health Organization’s pandemic planning assumed that the drug would cut transmission of the virus. But here’s the rub: none of these organizations have vetted the original trial data.
The only agency in the United States that seems to have independently reviewed the original trial data never made these claims. The F.D.A.’s conclusion ? which it required Roche to print on Tamiflu’s product labeling ? is that “Tamiflu has not been shown to prevent” complications like serious bacterial infections (for instance, pneumonia). It seems that federal agencies like the C.D.C. and H.H.S., instead of conducting an independent evaluation of Tamiflu, advocated stockpiling by referencing claims in journal publications written by the drug’s manufacturer, ignoring the F.D.A.’s assessment that those very claims were unproven.
Why would they do this? Unwarranted trust in the peer-review process of medical journals probably has something to do with it. So, too, does wishful thinking; lacking good alternatives, it’s tempting to hope that the drug we have works wonders?not to mention the pervasive (but mistaken) belief that something is always better than nothing. And it’s important to remember that correcting the statements of medical journals or public health agencies falls outside the F.D.A.’s jurisdiction ? when it comes to drugs, the F.D.A. is responsible for regulating industry, not other government agencies.
But this is no way for supposedly evidence-based decision making to work, and the F.D.A. could do much more. As a result of new freedom of information policies in Europe, the Continent’s version of the F.D.A., the European Medicines Agency, has released 22,000 more pages of Roche’s Tamiflu trial reports. But even this represents an incomplete picture, as the most detailed portions of the reports are not in the European drug regulator’s files.
Nevertheless, the data point to a drug of minimal benefit. In accordance with the F.D.A.’s findings, it appears to shave a day off the duration of influenza symptoms, but we found no decrease in risk of hospitalization and no evidence that it could stop the spread of the virus. More worrisome, we found suggestive evidence that Tamiflu interfered with the body’s ability to produce antibodies against influenza ? which could affect the body’s response to influenza vaccine and its ability to fight off future influenza infections. But to do a complete analysis, including evaluating Tamiflu’s potential harms, we need the remainder of the data ? the full “clinical study report” ? promised by Roche, but never delivered for a variety of shifting reasons that we have recently detailed in an article in PLoS Medicine.
In response to our conclusions, which we published in January, the C.D.C. defended its stance by once again pointing to Roche’s analyses. This is not the way medical science should progress. Data secrecy is a disservice to those who volunteer their bodies for clinical trials, and is dangerous to those being asked to swallow approved medicines. Governments need to become better stewards of the scientific process. The European regulator’s announced intention to release clinical study reports after it finishes reviewing a manufacturer’s application is an important precedent. Their position?that “clinical trial data should not be considered commercial confidential information”?is a bold step in the right direction. But the F.D.A. ? guardian of arguably more trial data than any other entity in the world ? appears stuck in the era of data secrecy.
We should not have to wait for patients to be hurt by the medications they take, as recently happened with the diabetes drug Avandia, before reviewing this wealth of data.
Peter Doshi is a postdoctoral fellow in comparative effectiveness research at Johns Hopkins University School of Medicine. Tom Jefferson is a Rome-based independent epidemiologist with the Cochrane Collaboration, an international nonprofit research organization.
A version of this op-ed originally appeared in the New York Times on April 10, 2012.
Filed Under: Pharma, THCBTagged: Avandia, CDC, Clinical Trials, drug data, evidence-based decision, F.D.A., influenza vaccine, peer-review process, Peter Doshi, Roche, stockpiling, swine flu, Tamiflu, Tom Jefferson, unpublished research, WHO May 11, 2012
By Aza Raskin
Privacy policies are long legalese documents that obfuscate meaning. Nobody reads them because they are indecipherable and obtuse. Yet, these are the documents that tell you what’s going on with your data — how, when, and by whom your information will used. To put it another way, the privacy policy lets you know if some company can make money from information (like selling you email to a spammer).
Creative Commons did an amazing thing for copyright law. It made it understandable.
Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.
In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.
With the rise of web services, your information can end up in unexpected places. To get a better understanding of some of the complexities of data flow, we sketch out how Anti-phishing works in Firefox (with help from Oliver Reichenstein).
Here’s what that looks like as a wall of text, which is the typical privacy policy mode.
The difference in understandability is huge between the text and the schematic. In fact, while we were working on creating this infographic we found a hole in our legalese and updated it accordingly.
The idea here is that by creating a visual schematic language, it is relatively painless way for a company to convert their wall-of-text into something a bit more approachable. And that the more visualization actually shines a light into the dense tangle of words, possibly highlighting flaws or trouble spots that would have otherwise remained hidden.
The visual schematic language is a descriptive way of explaining a privacy policy and helps us to understand what’s going on underneath the hood. It doesn’t solve the problem of being able to quickly figure out the guarantees a privacy policy is making on your data.
For that, we want to move from the descriptive to the proscriptive, to a set of legally-bindings icons like Creative Commons.
As an experiment, we tried a schematic form of icons. The feedback that we’ve got so far is that the schematic is over-kill and that a set of icons more similar to Creative Commons’s would be easier to scan and understand. The next step is for us to come up with a set of orthogonal decisions about what compromises the most important aspects of a privacy policy. In the end, we probably shouldn’t have more than 5 icons in the interest of simplicity.
For now here are a set of axis we’ve come up with that need to be whittled down:
Is your information…
Shared with a 3rd Party? Shared internally within the company?
Anonymized/Aggregated before being stored or used?
Personally Identifiable?
Stored for more than x number of days?
Encrypted on the server?
Monetized (sold) in some way?
Usable to contact you?
Update: Based on the feedback, we’ve decided the set of attributes people should care about.
Aza Raskin, former head of user experience at Mozilla Labs and creative lead for Firefox, now runs Massive Health, a startup that aims to help people take control of their health. This post originally appeared at his blog.
By Danielle Ofri
I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care. If you aren’t sure of the difference between the two, then “God’s Hotel” is the book for you. It’s an engaging book that chronicles this fin-de-siecle phenomenon from the perspective of San Francisco’s Laguna Honda Hospital, the last almshouse in the United States.
Dr. Victoria Sweet, a general internist, came to Laguna Honda for a two-month stint more than 20 years ago and ended up staying. Laguna Honda was home to the patients who had nowhere else to go, who were too sick, too poor, too disenfranchised to make it on their own. The vast open wards housed more than a thousand patients, some for years. Laguna Honda was off the grid, and this, Sweet discovered, was to the benefit of the patients.
Unencumbered by HMOs and insurance companies, the doctors and nurses practiced a very old-fashioned type of medicine, “slow medicine,” as Sweet terms it. There was ample time for doctors and nurses to get to know their patients, and ample time for patients to convalesce. Many a written-off patient recovered within the comforting, unhurried arms of Laguna Honda.
Sweet realizes that the inefficiencies of this old-fashioned hospital – from the doctors who had time to fully research their patients’ complicated histories, to the nurse who knitted a handmade blanket for every charge on her ward, to the chicken that wandered regularly through the AIDS ward, bringing a spark of life to even the most demented patients – were actually its secret weapon. The inefficiencies were actually quite efficient, if your metric was healing patients.
Then arrived the consulting firm of “Dee and Tee, Health-Care Efficiency Experts.” Horrified by the rambling open wards and the old-school style of medicine, never mind the chicken, Dee and Tee quickly cut out excessive head nurses, consolidated departments, speeded up discharges and created committees, PowerPoint presentations and forms with 1,100 boxes. The consulting firm never consulted with any staff members who actually took care of patients, but they did stand to earn 10 percent of any savings engendered.
Thus Laguna Honda was rapidly schooled in the inefficiencies of efficiency, as patients without nurses grew sicker, and enthusiastically discharged patients spiraled downward, had multiple ER visits and were eventually readmitted to the hospital. Dee and Tee, of course, did not have to pony up for any additional costs the consultancy caused.
Over the course of Sweet’s 20 years as a staff physician, Laguna Honda made this painful transition from the practice of medicine to the delivery of health care, and it was the patients who suffered most, followed by their caregivers.
During this period, Sweet found solace in her doctoral studies of Hildegard of Bingen, the medieval healer, nun, mystic and composer. Hildegard’s pragmatic and thoughtful approach to medicine appealed to Sweet and even informed her own practice of medicine. Stymied by an oddly agitated patient who’d already been given a full diagnostic workup, Sweet had a What-Would-Hildegard-Do moment, and decided to simply sit with the patient.
She sat with the patient for a good long time, watching her, thinking about her, being in the moment with her. There was something frankly medieval about the patient’s twisting and writhing, as though she were trying to expel something, as though she were … poisoned.
Reviewing the chart, Sweet realized the woman was indeed being poisoned – by her own medications. A toxic brew of antidepressants, antipsychotics, pain meds and sedatives had led to serotonin syndrome. Sweet decreased the patient’s medications, and within hours the patient improved. She eventually stopped nearly all the medications, and the patient became well enough to go home.
Untangling the mass of medications that most patients arrived with became Sweet’s hallmark. She found that nearly all her patients could be relieved of a portion of their accrued medications. But this could only work in the setting of “slow medicine,” of having time to watch patients carefully over an extended period, of digging deep into the convoluted lives of these patients, of having time to “just sit” with each patient.
This, of course, is highly inefficient, if you are Dee and Tee. But it’s remarkably efficient if you are a patient and are interested in being cured, cared for and comforted.
You might not expect a book about San Francisco’s most downtrodden patients to be a page-turner, but it is. With its colorful cast of characters battling the tide of history, “God’s Hotel” is a remarkable journey into the essence of medicine.
In 1925, Dr. Francis Peabody told a graduating class of medical students that, “the secret of the care of the patient is in caring for the patient.” Simple, eh? If Peabody were practicing medicine today, he’d surely be consolidated with a midlevel provider to deliver health care with maximal quality indicators and operational excellence. Sigh …
Danielle Ofri is the author of three books, including “Medicine in Translation: Journeys with My Patients.” She is an Associate Professor of Medicine at New York University School of Medicine and editor-in-chief of the Bellevue Literary Review. She is currently writing a book about the emotional life of doctors. This post appeared in The San Francisco Chronicle.
Filed Under: Hospitals, THCBTagged: caregivers, Danielle Ofri, Dr. Victoria Sweet, God’s Hotel, Laguna Honda, Patient, Patient-centered care, practice of medicine, slow medicine May 11, 2012
By Shannon Brownlee and Joe Colucci
When most of us think about Facebook, the first phrase that comes to mind probably isn’t “good Samaritan.” Facebook is an easy way to keep in touch with friends, and it can be a gigantic time-suck, for sure, but last week the site did something that could truly benefit a lot of people. On May 1, Facebook launched an initiative to encourage users to become organ donors, and within 24 hours there had been a spike in the number of people volunteering their body parts for the good of others.
California’s registry saw almost two months’ worth of people sign up within the first day after the Facebook put up the feature.
Organ transplantation is one of the miracles of modern medicine, but there simply aren’t enough organs to go around for all the patients who need them. According to the United Network for Organ Sharing (UNOS), there are 72,900 people on active lists waiting for an organ. Compare that number to the 2,263 transplants that took place between January 2011 – 2012. Last year, more than 6,000 people died waiting for an organ.Obviously, increasing the number of organ donors could have a huge impact on the number of transplants – and on the lives of thousands of people.
Why don’t more people become donors? Some object on religious grounds, but the biggest obstacle is inertia. Most of us who sign up to be organ donors (I’m one of them) do so when we renew our driver’s license, by checking a box on a form saying we want to donate our organs. If you don’t mark the form, it’s assumed you don’t want to donate. Most people only encounter this choice every few years, when their driver’s license is up for renewal, and it’s hard to think about such a decision while standing at a Department of Motor Vehicles counter.
Some countries, such as Spain, Australia and Germany, have opt-out systems. It’s assumed that you are willing to donate unless you’ve said you prefer not to. Rates of donation in those countries are sometimes higher than in the US, although some presumed-consent countries have much lower rates. (Factors other than the number of donors, like the availability of surgical facilities and transplant surgeons, can affect the number of actual transplants in different countries.)
Another way to get more people to donate would be a “mandated choice.” This idea was proposed by behavioral economist Richard Thaler, in his book Nudge: Improving Decisions About Health, Wealth, and Happiness (with Cass Sunstein). Instead of a form that you can simply leave empty if you don’t know whether you want to donate, you have to choose between “yes” and “no.” There’s psychological evidence that even having to make that choice could get more people to think about their preferences and choose to donate. Israel has yet another incentive to get people to donate: those who are registered as donors get priority if they later need an organ themselves. Facebook’s effort depends on another psychological effect, the power of social persuasion. If your friends are all donors, maybe you should sign up, too.
Whether or not Facebook’s initiative will have a sustained effect on the number of available organs remains to be seen, but there’s a side to this issue that deserves at least a mention. Organ transplants are expensive. The surgery itself can cost as much as a million dollars, and that’s not including the drugs and other care transplant patients require for the rest of their lives. Granted, that’s money well spent in terms of lives saved. But imagine if there were enough organs for every person who needed one. We’d have to find more than $100 billion a year in addition to what we’re already paying for health care.
I’m not suggesting more organ donation is a bad idea, or that we shouldn’t do more transplants. Just the opposite. It would be money well spent. It’s also yet another reason to weed out the trillions of dollars we are on track to waste over the next decade on health care that doesn’t help patients or improve lives.
Joe Colucci is a research associate at the Health Policy Program of the New America Foundation. Shannon Brownlee, MS, is a nationally recognized award-winning journalist and author who has written for the New York Times Magazine, The New Republic, British Medical Journal and The Huffington Post, among many others. The post first appeared on the New America Foundation’s blog.
