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Entries in patient participation (6)


Occupy Your Mind

My wireless carrier recently sent me a text message:

You used 19767713 KB of 12634112 3G/4G data. Overage is 0.05/MB. Usage resets 12/08/2011.

That week, I spoke to a student who was applying to nursing school and was offered a package of loans. She was clearly informed of the total loan amounts and the interest rates, but not what the total monthly payments would be.

Simultaneously, I was reading an article in Rolling Stone about the Occupy movement, and this really resonated with me:

"There's no better symbol of the gloom and psychological repression of modern America than the banking system, a huge heartless machine that attaches itself to you at an early age, and from which there is no escape. You fail to receive a few past-due notices about a $19 payment you missed on that TV you bought at Circuit City, and next thing you know a collector has filed a judgment against you for $3,000 in fees and interest. "

Finally, I was reading Walter Isaacson's biography of Steve Jobs. Regardless of whether you agreed with him or not, Steve Jobs was passionate about Apple's products and committed to continuously improving them. He cared about how people used them.

What do these threads have in common?

Well, I appreciated that my wireless carrier was proactively notifying me of my data usage. But they did not really put much effort into actually communicating what I need to know. Even in 160 characters, they could have done much better than:

You used 19767713 KB of 12634112 3G/4G data.

First, I could not tell whether the first number was larger or smaller than the second. Can you?

That's because they used KB and no commas to parse the numbers into millions or billions or whatever.

They could have saved characters and increased the clarity of the message if they had converted to GB, and mentioned that the second number was my monthly cap:

You used 19.77 GB of your 12.63 GB cap on 3G/4G data.

Now I can see the first number is bigger than the second. 

Then they told me the penalty was 0.05/MB. Notice how they use the unit MB, when in fact they quoted usage in KB, and I really want to know in GB. I would suggest "Overage is $50/GB"

Now this all begs the question: why are they waiting until AFTER I exceed the cap to notify me?

If they cared about their product and service, they would know that I would appreciate a warning, say, at the 10 GB mark (out of 12) because at that time I could adjust my data usage and avoid fees.

Instead, I got on the phone with them to try to get them to reverse a $300+ overage fee. (All this data use related to the fact that I had accidentally backed up a movie file over my mobile hotspot connection.) They "adjusted" my bill based on the fact that I have been a mobile subscriber with this carrier since 1997. I wonder if others would have parsed the text message the way I did, noticed an overage, and called promptly. Calling promptly to contest it was big, because the company had not actually generated my bill yet, and so could still "adjust" things on the data level without having to make adjustments to the actual bill. A less informed consumer might have been stuck with the $300+ tab, and fees, penalties, and ultimately a collection agency.

The relevance to student debt is that apparently we are entering a student debt bubble similar to the mortgage bubble. A common cause of all these problems is that companies are not communicating numbers clearly to a public that is not terribly numerate (literate in the use of numbers.) My student had not yet translated the loans and interest rates into monthly payments over a defined term - which is how you really can make sense of payments.

Based on my coaching, she inquired and calculated and I heard back from her:

"The Stafford loan I received for 5,500 per semester is a little confusing for me. The rate is 3.4% for loans between 2011-2012, and 6.8% for loans between 2012-2013, and the term is 10 years. In either case, an origination fee of .5% is deducted from each disbursement- I've looked this up and it seems it's an extra fee added on for each monthly payment. I can defer this payment up to 6 months after graduation. I used an online financial aid calculator for the loan. I calculated each at their separate rates- so that'd be $5,500 at 3.4% for ten years (plus the fee), plus $16,500 at 6.8% for ten years, and that came to a total of $245.24."

She did the same for other loans, all with different rates and terms (Perkins, Unsubsidized) and came up with

"In total, my monthly payments would be around $328.41 per month."

That's now comprehensible because you can relate it to a monthly take-home on your paycheck, and to expenses such as a car payment or rent. Notice how we went from how the loan is quoted per semester at variable interest rates (because her school term spanned two rate periods), to one monthly payment for ten years.

My student had not really paid a lot of attention to the amount of debt her parents were going to take on. So I pointed out that she should really be helping her parents make sure the debt was affordable for them. They might lose their jobs or pension and she might end up having to carry their portion of the loan or otherwise supporting them in their old age!

"I calculated my parents loan payment- it would be about $965.56 per month, the rate is 7.9% over ten years with a 2.5% origination fee."

These are large monthly payments for a middle class family. The investment in a nursing career might well be worthwhile, but regardless, it's important to translate the blizzard of numbers from the university, into a set of total monthly payments. 

Most human beings are blessed with huge, flexible brains capable of learning the basics of discounted cash flow calculations, including compounding interest. I'd like to see companies and universities putting their collective minds to work on simplifying debt communication; and of course students and families should take on the task of educating themselves to the monthly payment and other implications of the bargains they are striking. I try to approach such tasks as puzzles. It can be fun and confidence building for anyone to brush off our math skills and figure out the details. For anyone who knows what I do in my day job (medical decision making), it should be obvious that all of this applies equally to interpreting the statistics we may hear about risks and benefits of treatments. We are blessed to live in an age where some internet research, or consulting a librarian or consumer/health advocate can usually generate better understanding at low cost.

Occupy your mind, and your wallet (and body) will thank you.




Cancer Screening Controversies

UPDATE - just got off the air and will add a postcript below.

I have just been invited to speak on KQED Forum, a San Francisco-based radio talk show, regarding cancer screening controversies.

The show will air Wed Oct 19, 2011, at 9 am PST and can be heard at 88.5 FM in San Francisco, or online at, or by podcast a day later at

I'm going to assemble a few resources that I can point listeners to and update this post. Email me if you have anything you want me to share with the public.

My key message about cancer screening or indeed any health-related action, is that all medical interventions have potential risks as well as benefits. It makes sense for individuals to learn what these are. In addition to consulting physicians, there are now educational resources called decision aids that take on specific topics. These decision aids can be print, audio-visual, or web-based materials. What distinguishes a decision aid from other health education materials is that they are organized entirely around a frequently encountered dilemma. Producers of good decision aids are not trying to persuade anyone to do anything in particular; rather they try to present a fair and balanced view of the pros and cons, including both quantitative evidence as well as qualitative stories or testimonials from patients who have experienced treatments and outcomes.

Producers of decision aids include a non-profit, the Foundation for Informed Medical Decision Making, which produces web, audio-visual and print decision aids with its commercial partner, a company called Health Dialog. Disclosure: I am the recipient of both research and implementation grants from the Foundation for Informed Medical Decision Making. Another producer is the non-profit organization Healthwise, which supplies many websites and medical centers with web or print patient education materials. Other sources of good information on medical decisions include the National Cancer Institute and the Mayo Clinic. There's a comprehensive index of decision aids at

Decision aid producers recognize that cancer screening programs create harms as well as benefits. Therefore, these producers have created decision aids targeted at some of the most frequent decisions: breast, prostate, colon cancer. I'll provide some links below. 

So why is there controversy? What could possibly be wrong with people weighing the risks and benefits of screening and making an informed decision with their doctor? I'm the wrong person to ask: I'm personally and professionally committed to informed and involved decisions. I am comfortable, overall, with the ethic of individual patient autonomy and self-determination. Occasionally ethical conflicts arise pitting the welfare of many against the freedom of the few, but these are rare and I don't see them in screening. The controversy may arise because we are still transitioning from paternalism to participation in health care decisions. As William Gibson said, "The future is already here, it's just unevenly distributed." 

Part of this transition is that there are many entrenched viewpoints and interests at stake. Outside of the health effects of screening on individuals and populations, there are people whose wealth or power or status grow with the use of screening technologies and processes. Conversely, some will benefit if screening technologies and processes decline in popularity. This is true in all industries, and health care is no exception. Some people are trying to drive revenue (for example, producers of drugs, devices, procedures and fees), while others are trying to contain costs (employers, insurance companies, government payers.) The patient is a passenger in a car with two drivers, one with a foot on the accelerator, the other with a foot on the brake. This is a dangerous ride. In that situation, the patient's best hope is to find a good doctor and take control of the car together.

OK on to some links:

1. Gary Schwitzer is a journalist who critiques media coverage of controversies, including screening. He has a great blog post at Scroll down to read his third point about cancer screening. A screening program is different from testing someone who is high risk or has symptoms. Testing can have very high benefits with very low risks or harms. Screening is when you go fishing in the general population in the hopes of preventing deaths at relatively low cost in financial or human terms. In actual fact, most screening programs prevent very few deaths at high human and financial cost.

2. Prostate cancer. A company called Health Dialog (see above) normally reaches patients through contracts with insurers, who pay to offer decision aids as a benefit to their members. However, the general public can access Health Dialog's decision aid on prostate cancer screening at Again, Health Dialog works with the non-profit Foundation for Informed Medical Decision Making to assure that the content is fair and balanced. Only medical editors with no financial or other conflicts of interest are allowed to shape the content.

3. Breast cancer - age 40. Regarding screening for breast cancer at age 40, my colleagues at the University of Sydney have produced a decision aid for that dilemma:

4. Breast cancer - age 50. A prominent health services researcher, Gil Welch of Dartmouth, has drafted a simple balance sheet that summarizes the benefits and risks of breast cancer screening for women in their 50s, I'm reproducing it here from his article in the British Medical Journal at

For every 1000 women undergoing annual mammography for 10 years in their 50s:

1 woman will avoid dying from breast cancer 2-10 women will be overdiagnosed and treated needlessly

10-15 women will be told they have breast cancer earlier than they would otherwise have been told, but this will not affect their prognosis

100-500 women will have at least one “false alarm” (about half of these women will undergo a biopsy)


5. Breast cancer - all ages. There is a more detailed presentation, broken down by age groups, in a Canadian decision aid for breast cancer screning:

6. Colon cancer. This screening is considered highly effective. I was a little shocked to review some numbers recently and learn how small the absolute benefit is, or to put it another way, how many people must be screened to detect one colon cancer (thousands!). The National Cancer Institute has helpful resources on screening. They are not exactly decision aids, because they are not structured in such a way as to synthesize the absolute data. But they provide good summaries. The one on colon cancer screening is at


Other than websites, I encourage people to review some informative books on the topics of cancer screening and risk reduction:

Gil Welch - Should I Be Tested for Cancer? Maybe Not and Here's Why. 

Gerd Gigerenzer - Calculated Risks. How to Know When Numbers Deceive You. 


We had a few callers on the show that with cancers diagnosed through screening. Their understandable reaction is that screening saved their lives. The hard truth is that we don't know what would have happened, whether symptoms would have developed, whether treatments at that point would have been effective. What we do know is that out of 100,000 people screened, we would expect a few lives saved. People have an understandable reaction that "if ANYONE is saved, it's worth it." If you feel that way, I understand, but then all of us should be parking a mile away from our office each day and walking that extra distance to work, because we would save about an equivalent number of lives, at no real harm (look both ways when you cross the street), and with the added benefit of feeling good from exercise. These are not mutually exclusive of course, you can do both. But the point is that we do make decisions that cost people lives - such as commuting to work from further away, in order to save on housing expenses. Lengthening your commute kills people. So if you feel your life was saved by screening, please evangelize people driving less as much as you evangelize screening.

I come away feeling that, in urging caution about screening, I am cast in the role of someone who wants to deny people access to potentially life-saving therapy. Not at all. My professional mission is for people to make informed decisions. If the benefits of screening sound like they are worth the harms, you should advocate for your access to the programs. The key point is self-determination. And the screening slogan should be, not so much, "Screening saves lives" but more accurately, "Screening saves a few lives per 1,000 people screened, and can lead to varying degrees of harm for dozens or hundreds of others. Whether it makes sense for you will depend on your priorities and perspectives. Review a decision aid and talk to your physician about it."

My wish is that people advocate harder for their access to decision aids. The public has long been too satisfied with the news media digesting and (mis)interpreting scientific studies. Ask your hospital or clinic or insurer to obtain decision aids for you if they don't already. Then make a list of questions and consult one or more doctors and record their answers so you don't forget them. These strategies are proven to improve patient understanding, question-asking, and information recall.


I have now heard from some colleagues who wish to convey their messages on this topic.

Hope Rugo, Director of the Breast Oncology Clinical Trials Program at the UCSF Breast Care Center, writes, "I think it is important for women to know that the reason for the controversy is that rapidly growing tumors that have the highest risk are least likely to be found on screening exams.  So in my mind, what we should learn from that is that: 1.  Screening mammograms are still useful, it is just not clear that you need to get them yearly when you are under the age of 50 as the breasts are very dense and lesions are less visible, as the benefit is low.  2.  Abnormal exam findings should always be thoroughly evaluated.  3.  The less frequent screening may not be the right advice for those with a family history or personal high risk (prior DCIS, calcs, etc)."

On the topic of bi-annual versus annual screening, Laura Esserman, Director of the UCSF Breast Care Center, writes: "Data is pretty clear. There is no demonstrated data that screening every year is better than every 2 years. There is an increased risk of being called back and having an unnecessary biopsy (Annals of internal medicine last week)- by almost 50% if you screen every year. The risk of missing advanced cancers is not statistically significant, and the magnitude of any difference negligible (2-3%). Same benefits, less risks. Screen every 2 years. And it fits biology that fast growing tumors present between screenings- even when annual." I will add from years of working with Laura, her highest priority is always that patients arrive at an informed decision with their doctors based on their personal priorities and unique biology.

From the Palo Alto Medical Foundation, Dr. Edmund Tai writes: "Family history is often overlooked and is tedious to do. We need to enlist patient to help with their own care by providing a more detailed history. THere is a free website run by the NCI called "My Family Health Portrait" that has a nifty software to allow a patient to enter their FH.  It can be tedious if there is a large family but it is a free tool developed by the surgeon general and is actually a good idea.  As I am involved in clinical cancer genetics FH is fundamental in identifying patients who are at the highest risk.  It is estimated that >30% of all cancer patients have some family hisotory of cancer and 2-5% (depends on cancer type) have very high risk hereditary transmission.  We have only developed an indepth understanding of breast, ovary, and colorectal cancer but more are forthcoming.  The reason is that there are only a few genes that have high penetrance and high specificity.  The majority probably are affected by multiple genes with low specificity and we hope newer technology would allow us to pick those up."





Decisions and reversals of fortune

I feel fortunate that my schooling led me to discover my professional calling. Based on undergraduate and graduate work in statistics and engineering, I now help people improve their leadership, teamwork, and decision-making skills. The most challenging decisions I have encountered are those involving a family health crisis.

One of the key concepts I learned early from my teachers (especially Professor Ron Howard) was the difference between a good decision and a good outcome.

In theoretical terms, you can look at decision-making in terms of coherence or correspondence. The coherence approach says, "How coherent is this decision at the time you make it?" In other words, you judge the quality of a decision at the time you make it, along a continuous spectrum. The correspondence approach says, you can't tell how good a decision was until you see the outcome.

The implications are significant for medical decision making. But before I get into that, let me illustrate them using an example from everyday life.

In early February, 2011, we had a busy father/son day in my family. The Giants were celebrating FanFest and we were given passes to get in early. My son was also looking forward to his playoff game in a local basketball league. Then we were celebrating Chinese New Year with my in-laws. (None of us is Chinese, but we live in San Francisco where this feels like a national holiday for all to enjoy.) To conclude this busy day, we had an invitation to go to a Cal basketball game as guests of my in-laws, or stick with our plans to watch USF play Santa Clara.

As the day progressed, we faced a series of decisions. It started early in the morning. I was intent on getting my son out the door so we could catch the bus (my wife and our daughter had the car). We needed to look ahead at all the gear we would need that day. I printed out a color map of the FanFest events. My son was sure that with our early passes we would have unlimited access to autographs etc. I figured out the bus schedule online and off we went. I was feeling pretty good. Ten minutes into the bus ride, my son asked me if I had the FanFest tickets. No! We jumped off the bus and headed back home.

Now we were going to be running late for the 9:30 gates at FanFest. As we rode another bus home to get the tickets, I formulated some scenarios. First I called my wife to see where she was with the car. No answer. I didn't leave a message, figuring I shouldn't bother her. We can work this out on our own, right son?

Next I told my son we could call a cab. But cabs are notoriously unwilling to come out to our house on the outskirts of San Francisco. They almost always pick up rides off the street even after accepting the dispatch to our house. Another alternative was to call Uber. This is a unique company that dispatches airport limos that have downtime, and redeploys them as city taxis during each hiatus between booked rides. You can order them using your smartphone and see their progress on a map as they come and pick you up. But it's two or three times as expensive as a cab.

My son thought we should just call a cab. I did, and got an estimate of 5-20 minutes. Twenty minutes later, no cab. Now we were really stuck because going with Uber would cost a lot and still not get us there on time.

How am I doing, son, with my decision-making?

Just at that moment, we got bailed out. My wife came home with the car. I called and canceled the cab (still no sign of it). We all dashed down to FanFest. We got there in time for the opening of the gates at 9:30 am.

Now here's where things get interesting from a decision making point of view. The gates did not open at 9:30 as scheduled for us special pass holders. And when we got there at 9:30, as opposed to waltzing in with no line (as in previous years), we had to find the back of the line... which was a 20 minute walk down the Embarcardero, practically at the Ferry Plaza. Apparently winning the World Series changes the dynamics at the Giants FanFest.

I despaired of ever getting into FanFest. I asked the kids, "Should we bail on the line and go get an ice cream sundae at the Ferry Plaza?" I don't EVER offer food bribes as distractors, so this captured their interest. But they were more intent on FanFest.

The line started moving at 10:10 and we got in at around 10:30. It was jammed. No hope of getting autographs by noon (our departure time for my son's basketball game). My son lamented the timing of his game - without it, he would have gotten in line for the autographs and grab bags, and maybe even viewed the World Series trophy (longest line for that one). But one of my management principles, for family and work alike, is that we keep our commitments in the order we make them. We attended some Q&A, watched some video highlights of backstage at the World Series, and wandered around. Then left for my son's game. As we left the attendant reminded us, no coming back in.

As soon as we got to a quiet place, my wife checked her voicemail and indeed there was a message. Our son's game was canceled - rescheduled to Monday. Aargh! Had we known this 10 minutes earlier, we would have stayed at FanFest for another couple hours before meeting my in-laws for lunch. There was much wailing and gnashing of the teeth and bemoaning of our fate, particularly by a certain 10 year old for whom this was a big big deal.

For the second time that day (an all-time record), I offered a junk food bribe as a distractor, this time successfully, and we all went to Jamba Juice.

Of course, when we got to lunch at Shanghai Dumpling, the line was long and we then faced the decision of, should we stay or should we go? We stayed. Service was slow. The food, when it arrived, was divine.

Finally, we went to the USF game. This was a make-up game because I had been too sick to take my son to the USF-Gonzaga game earlier in the month. Which turned out to be a cliffhanger pulled out by the home team, USF. This one, against Santa Clara, was OK. Meanwhile, the game we didn't go to turned out to be a triple-overtime thriller at Cal.

So how did we do in terms of decision-making?

Let's recap. First, except to my son, there was nothing terribly high stakes on this afternoon. I would say I made a low-quality decision when I spent a lot of time printing out a color map of the Fanfest events and lost sight of what should have been a higher priority, locating and bringing the tickets. This was a low-quality decision regardless of the outcome: I would recognize that as an error even if it never cost me anything.

I also made a foreseeable error when it came to ordering a cab. At that point, my son and I believed that arriving by 9:30 would be critical to our enjoyment of an event we had been looking forward to for weeks. Given what I value in clear-headed moments, this was not the right time to save a few dollars, particularly given my long and negative experiences getting cabs out to our neighborhood in a timely fashion. The Uber airport limo service, in contrast, is a lock. I should have splurged. Note that I feel that way even though we had a happy outcome, in that my wife and daughter showed up with the car.

With the benefit of hindsight, some would say, "Fanfest was over-run. You would have wasted money on a car service, and the delay associated with returning to get your tickets turned out to be immaterial." True, but given what I believed and what I valued at the time I made those decisions, they were lower quality decisions than I could and should have made. Regardless of the outcome.

Leaving FanFest was, in contrast, a good decision even though the outcome was unhappy. We experienced much regret over leaving when we learned we did not have to be at my son's playoff game. But again, given what we believed and valued, it was the right thing to do and I would do it again under the same circumstances. Perhaps my wife could have checked her voicemail before leaving the park, but it was too noisy, and anyway we share a family value of not being obsessive about checking our voicemails and emails when we are together.

At the restaurant, we chose to wait because my mother-in-law assured us the food would be worth it, based on her prior experience. We loved it. It would have been a good decision, based on what we believed and valued at the time, even if the food had turned out badly.

We attended a decent USF game and missed a splendid Cal effort in their triple-overtime loss to Arizona. My son doesn't quite subscribe to the coherence theory of decision quality (yet!), so his consolation was that Cal lost, and in retrospect, three overtimes preceding a loss would have simply prolonged his suffering. Better for him to have enjoyed the USF win. This logic is impeccable among sports fans, and matches the correspondence theory of decision quality. As a management scientist, I feel this is indeed incoherent. Attending the USF game over the Cal game was a good decision before the games took place, based on what we believed and valued that afternoon. How could the outcome of the night-time games change the quality of our decision?

Coming back almost full circle to the Chinese New Year, I just read my daughter a Buddhist fable that illustrates the different reactions we all may have to reversals of fortune. The gist of the fable is that a villager's most prized possession, his horse, disappears one night. Others come to express their condolences, or perhaps revel in his misfortune. "What bad luck," they say. "Good luck, bad luck, we'll see." shrugs the villager. Next, the horse returns with a dozen wild horses. "Congratulations on your good luck," sings the chorus. "We'll see" says the villager. Then the villager's son breaks his leg while taming the wild horses. "Such bad luck" say the neighbors. Again, from the villager: "We'll see." As the son is limping around, the Emperor's army sweeps through the village and drafts all able-bodied men. The son escapes this fate. "So lucky," say the other parents. "We'll see" says the son, who has internalized his father's attitude.

This fable illustrates that even the quality of outcomes cannot be judged in the short term! So even if you subscribe to the correspondence theory of decision quality, you are stuck waiting an arbitrarily long time before you can judge a decision. The correspondence view of decision quality is indeed incoherent.

The coherence theory of decision quality - judging a decision based on what is known and valued at the time it is made - allows us to surf on the sea of uncertainty without drowning in regrets at every reversal. This philosophy of decision making is perfectly captured in the Serenity Prayer - "Give me the courage to change the things I can change, the serenity to accept the things I cannot, and the wisdom to know the difference."

Conversely, many in our culture tend to judge outcomes. If things turn out well, conventional wisdom supposes the happy events must have been preceded by good decisions. If things turn out badly, it was because of bad decisions. 

Over the years I have directly worked with hundreds upon hundreds of patients making life and death decisions. I have reviewed hundreds more such cases through my work with organizations implementing decision support programs. Bringing the coherence theory of decision quality to the patient bedside or examining room has been rewarding because people recognize and embrace it as the most productive way to take positive action while recognizing the limits of our control. Decision support programs encourage patients to review information, ask questions of their doctors, and reflect critically on the responses they get. In practice, this usually means slowing down, challenging authority, and getting second opinions, among the seven steps I have described previously. And, having followed this process of critical reflection, we can move forward with confidence and recognize any reversals of fortune as simply bad outcomes that sometimes follow even good bets.

Recently one of my colleagues saw a patient who had experienced a recurrence of breast cancer five years after her initial treatment. In addition to suffering from the recurrence, this patient was experiencing significant distress over her recollection that she had declined the most aggressive possible treatment the first time around, opting instead for a slightly less aggressive strategy with significantly fewer side effects and a slightly higher rate of recurrence. My colleague showed this patient the list of questions  and consultation records generated five years ago as part of our decision support program at UCSF. The patient was relieved to be reminded of the coherence of her original decision, based on what she and her doctors knew and valued five years earlier. Although no one likes to think of medicine as a gamble, she recognized that she had made a bet that was right for her at the time. With a reminder, our patient was able to separate her decision from a subsequent reversal of fortune. Indeed, she might have recurred even with the more aggressive and invasive treatment. Who knows? We will support her in moving forward with courage, serenity, and wisdom.

My personal and professional experiences leave me more resolved than ever to promote the coherence view of decision quality. Others have used fighting words such as logical or rational to describe this view of decision making. Fighting words because people can have different standards for logic or rationality, and will resist the imposition of someone else's definition. But decision quality is not binary like logical/illogical or rational/irrational. It is a spectrum. Please join me in asking this question, especially in high stakes situations: to what extent do our decisions reflect what we know and value at the time we take action?





Structure empowers and constrains

Oulipo is an artistic movement committed to creating works of art based on constraints. The most famous constraint-based art forms are probably the haiku and sonnet.

I've been reflecting on the Oulipo recently because patients and colleagues have commented on my SCOPED model for structuring notes about decisions. I teach people to use the SCOPED model for writing lists of questions (e.g. for their doctors); for taking notes at a consultation; and for arriving at a decision. (See It's not limited to medical decisions, but those are particularly well-suited to this kind of analysis.

SCOPED stands for Situation, Choices, Objectives, People, Evaluation, and Decisions.

Some people love the structure. One patient recently wrote:

"I loved the way my summaries were organized, i.e. "Situation"; "Choices/Questions" etc. It is an excellent way to make this confusing process more clear. I don't know if this is standard. If it is not standard, it should be. This program should be shared with all major medical centers. It is an amazing method of actually educating patients and involving them in their own healthcare decisions, rather than just being passive patients who "receive" treatment."

A physician once told me that SCOPED was the next-generation standard for documenting informed consent.

I coined SCOPED as an homage to the SOAP note in medicine. SOAP stands for Subjective, Objective, Assessment, Plan. It is the rubric that doctors and nurses use to guide their patient interviews and notes today. Notice, however, it does not actually mention decision making. So SCOPED is intended as the SOAP note for shared/informed medical decision making.

One reason to have a mnemonic is that it helps with thinking. People can hold 7 or so thoughts in their short term memory. But if you form a hierarchy out of your thoughts, you can retain 7 items within each of 7 categories. So the six elements of SCOPED can be a scaffolding to hold 7 items per category. The people I train to process decisions using SCOPED go from being able to think and talk about 7 items at once, to balancing 42 decision issues in their heads. 

Another reason for structure of this type is simply analytic. We can communicate more clearly when we focus our communication on one subject at a time. We can cluster topics under a rubric and then deal very efficiently with related topics together. So, for example, I recommend that doctors and patients discuss the key facts driving a Situation (e.g. the key prognostic indicators) before going on to discussing what treatment Choices are available. Otherwise, decision conversations become a spaghetti jumble of past, present, and future issues.

Communication can also become much more efficient if people adopt a common scaffold or structure. If people adopted SCOPED (or another worthy framework) as a common structure for thinking, talking, and writing about decisions, they could focus in very quickly on the sparse or underdeveloped dimensions. It's great to be very clear on the Situation (physicians spend a long time taking a history), but not so good if that only allows 3 minutes for Evaluation of how each Choice affects each Objective. A structure like SCOPED allows you to see where the gaps are in your current thinking.

Admittedly, this is a very propositionally oriented view of communication. Much communication is non-verbal and that is very important. But in discussions where some factual learning is going on, such as patient-physician conversations, we want to make sure the verbal communication is as good as it can be. I have found that, somewhat paradoxically, being more business-like about communication (e.g. following an agenda) provides structure that is very conducive to intimacy and relationship-building. In my view, a structure like SCOPED can enhance the therapeutic alliance. 

But some people think SCOPED is too complex. A very popular author told me, "For every letter you drop, you'll see an exponential increase in adoption." A very experienced medical school professor told me, "students can't handle something so conceptual. Maybe four letters." Another colleague asks, "Is there a SCOPED light version?"

Maybe we'll get there. But I am not giving up on the idea that people can quickly learn and hold a 6-item scaffold in their mind. I also like the fact that SCOPED is a theory-based framework. Decision and organizational theory suggest that these dimensions are necessary and sufficient to critically analyze any decision. In other words, if you leave one of the SCOPED elements out (the People section is often under-developed), you are at risk for making a poor decision, one that may not be fully endorsed and implemented by other participants and stakeholders. Conversely, the theoretical claim is that there is nothing you can think, say, or write about a decision that does not fit into one of these categories. You need all six, but you don't need any others.


Seven Steps to Survive

March 6, 2006 (en français)

Seven steps to survive a high stakes situation, such as a serious medical diagnosis:

1. Face the facts – Everyone has a fight, flight or freeze reaction when confronted with danger. You need a lot of courage to harness your emotions and face the threat directly, and realistically. In the past, you may have denied there was a problem, delayed taking action, fled the scene. No more. The first step is to name the type of situation you’re in, recognizing what’s at stake and how much time you have.

2. Take charge (own it) – Your life or livelihood is at stake. Your health or wealth is at risk. Wouldn’t it be great if you didn’t have to worry? If your doctor/spouse/boss/friend could protect you and defend you and make everything turn out right? Think about it for a second though. It’s your life that is on the line. Who owns your life? You do. Take responsibility for your response to whatever situation you face, no matter how much you may need and deserve a miracle out of thin air. Previously, you indulged in wishful thinking about someone else solving the problem for you. Now, you declare yourself your own guardian angel, white knight in shining armor, and miracle maker.

3. Stop the train – Your first job as officer in charge of your situation is to call time out. In a high-stakes situation, other people tend to start moving. Their motion usually leads towards their goals, which may not be yours. Previously, you went along. Now, you’ll stop the momentum and reassess.

4. Pick your team – You can take charge, but that’s not to say you must deal with a high stakes situation alone. Find help. But notice that finding help is different from waiting for help to find you. The kind of help that finds you may not be what you need. Before, you were grateful for whoever showed up – now you will figure out who is best suited to help you, and go get them on board.

5. Use your resources and do your homework – We all have different resources. Some have a lot at their fingertips, others face barriers. Barriers are unfair and dangerous. If you’re poor, or marginalized, or the victim of discrimination, you face additional burdens. Anyone, though, can make the most of what they have. You need to take stock of your resources, and then use them. All of them. If you’re among the poor, downtrodden, and forgotten, you will need to use some of your resources simply to overcome barriers that others don’t even face. Again, this is unfair. Before, you might have given up, or engaged in self-pity about your plight. Now, you make a list of resources, and a plan for using them effectively to do your homework. Doing your homework means figuring out what the world has to teach you about your high stakes situation. Usually, you will learn that you have some choices to make.

6. Decide and conquer – As the leader in charge of your high stakes situation, you will respond. Your response will usually involve choosing between different alternatives. You can’t control the future, but you can play the odds. You know the difference between a good bet and a bad bet, and how to make smart bets.

7. Follow through – now you’ve got the train rolling on your tracks. Trains do get derailed and you’d better not come unglued. Back to step 1 if the train gets off track. You face the facts, take charge, stop the train, pick your team, use your resources/do your homework, divide and conquer, and follow through.


Going to the Doctor?

April 6, 2005 (en français)

People diagnosed with a serious condition are often thrown into overload. However, you have the right to participate in all your medical decisions, and it’s important for you to exercise this right. Otherwise, the treatments you get may not reflect your personal goals and priorities. This article will summarize some tips on how to participate in decisions about your care, based on my experiences running a program of decision services for patients at UCSF.

If you haven’t already, please read my article summarizing Top Ten Lessons From People that Have Been There Although based on the experience of women with breast cancer, many of the lessons apply to any medical situation. One of the key points is that no matter how panicked you may feel about a serious diagnosis, you probably have time to engage in “due diligence” about your treatment options. You should not allow yourself to be rushed into having surgery, for example.

Your decisions will be made in the context of visits to medical specialists. You probably will need to see several specialists who can advise you on different ways of treating your condition. I call this the “Visit Cycle,” because you may feel caught in an endless round of appointments. One way of coping with all these medical visits is to separate each one into three phases: before, during, and after. Here are some simple things you can do to maximize what you get out of the visits:


Try to create some time ahead of your appointment to write down a list of questions and concerns. You don’t want to get in to your doctor’s office and then blank out on all the issues you were meaning to discuss. Or, if you’re like me, you sometimes walk out of your doctor’s appointment and then think of 3 really important questions you should have asked. Rehearsing for your appointment can prevent this kind of problem. At UCSF, we use a prompt sheet to help patients cover all the bases.

Briefly, the bases you need to cover fit into the acronym SCOPED.

S is for Situation. Think of what questions or concerns you have about your situation. Do you understand your diagnosis? Has a doctor explained your test results?

C is for Choices. What can you do about your situation? What is your current understanding of the available options? What questions or concerns do you have about the options, including experimental therapies and complementary approaches? One set of choices that you should ask about includes further testing to clarify aspects of your situation, or to get a second reading on it since sometimes people are misdiagnosed.

O is for Objectives. What are your goals for treatment? What are your priorities for quantity and quality of life? Don’t assume that the people around you have the same priorities. People differ in their life situation. Just to give an example, some are highly focused on extending life as long as possible, while others are more focused on quality of life.

P is for People. Who are the key people that you would like to involve or exclude in your decision process? Start with your doctors: whom do you need to consult? Are you looking for them to make the decisions with your input? Or are you looking to make the decisions with their input? Or do you want to make the decisions together? It’s important to let your doctors know who else is on your team and how you would like them to be involved. Perhaps you would like the doctor to make sure the friend you brought along is fully briefed because you want them to help you make decisions later. Sometimes a doctor or family member or friend may be taking a more active role than you would like in driving the decisions, and you need to redirect their energies towards supporting you more effectively.

E is for Evaluation. How do your choices affect your objectives? What information is available about how each treatment choice (including no further treatment or vigilant monitoring) affects each objective (like survival, recurrence, quality of life). Ask your doctor if quantitative information is available from the evidence base, and get it in absolute terms. For example, "Studies show that no treatment is associated with 80 out of 100 people surviving more than 10 years, while treatment X is associated with 90 out of 100 people surviving more than 10 years." Be wary of relative numbers such as "Treatment Y is 20% more effective than Treatment Z." Survival and side effect rates are increasingly available and while your experience will be unique and different from anyone else's, they can help you weigh the risks and benefits of treatment.

D is for Decisions. Which choice appears best in helping you what you need and want? What are the next steps to implementing that choice? Or, do you need to collect more information about your Situation, find better Choices, think harder about your Objectives, talk to more People, conduct a more thorough Evaluation? When you are in the early stages of decision-making, don't feel rushed to come to a decision unless it is a medical emergency. Feel free to put off arriving at a final decision while you review your questions about the Situation, Choices, Objectives, People, and Evaluation as described above.

Using the SCOPED checklist, write down your list of questions, and get it to your doctor in advance, so they know what issues you are going to want to cover during your appointment. Email, mail, or fax your questions and ask the office or nursing staff to bring them to your doctor’s attention.


When you go to see a doctor, especially a medical specialist, you may encounter barriers to getting what you need out of the visit. Specialists often use complex language to describe what’s going on. They are sometimes in a hurry, being overloaded themselves. Don’t be intimidated. Bring a tape recorder. Mention that you would like to audio-record the consultation because repetition helps you learn and you want to be able to review the doctor’s advice later. Also bring someone who can start and stop the tape recorder and who will take good notes for you. Your note-taker or scribe should be someone who is not too emotionally involved in your situation. You want someone who writes clearly, has excellent hearing, and is as familiar as possible with all the medical terminology you will encounter. Your scribe does not need to write down every word that is said (you have a tape recorder running, after all), but they should write down the key points. Ideally your scribe will be someone assertive who can ask the doctor to slow down if they are going too fast. Who makes a good scribe? Ask your friends who they would recommend to bring along. A friend-of-a-friend is likely to be someone who cares about you, but will stay focused on their job (starting the tape recorder and taking notes) without getting distracted. See if you can find a resource center in your area that has a “buddy” program or can match you with a navigator.


Soon after your medical visit, you should gather your support team to help you debrief. You can use the SCOPED framework to review your notes and the tape recorder. What did you learn about the situation, choices, objectives, people, evaluation process, or data? What treatment strategies are emerging as winning candidates to address your goals and priorities? Again, you need to be mindful of what roles you wish to assign people. If someone is crossing a boundary and makes you feel uncomfortable, you can be explicit about their assignment. Use the three V’s to help me assign roles: Visibility, Voice, and Vote. Visibility means you want to keep someone informed of what you are doing and why. Voice means you want their input. Vote means you want them to make the decision with you (it doesn't mean they are literally going to vote, I'm using this term as a metaphor for making the decision). Of course, in some cases you may want your doctor to have the only Vote, while listening to your Voice. But in general, people who act in your behalf may not act in your interest, simply because they are different from you.

When it’s time to make a decision, there are lots of simple processes that may help you clarify your thoughts. Many of them involve making lists or filling out tables or drawing diagrams. Why? Because, as one writer once said, “I write so I can see what I think.” When things are swirling around your head in a cloud of confusion, it’s hard to converge on a strategy. But if you write things down in a structured way, you can see patterns emerge. For example, Benjamin Franklin supposedly used to make a list of pros and cons for any alternative under consideration. Then he would cross out pairs of pros and cons that cancelled each other out, greatly simplifying the comparison. Another option is to make a table with choices in the rows and objectives in the columns. You can then summarize (in the table cells) how each choice advances that objective. You can do that in words, or with check marks, or by assigning points.

After visiting a specialist, though, you may not be ready to make a treatment decision. Chances are you may need to consult another specialist. Go back to step 1 and use the SCOPED framework to make a new list of questions. Of course, these will be better questions. I’m reminded of a quote: “We have not succeeded in answering all your problems. The answers we have found only serve to raise a whole new set of questions. In some ways we feel we are as confused as ever, but we believe we are confused on a higher level, and about more important things.” Although that doesn’t sound much like progress, it is. As you consult your specialists, if you prepare beforehand, engage during, and debrief after each visit, a picture will emerge of what to do and why.