The Bell Curve Is it okay to be average? Who is the average person in this school, class, ect? Is trying hard enough? See Falling Down. Meaningful way to measure the immeasurable • Once you have some data what you do with it = ingenuity that makes a dif. In lives grades, $, politics, and so on. • We’ll see how this applies to treating a rare fatal ailment of the respiratory system Case study: Annie, Signs/symptoms • Salty taste to the skin • Wheezy breathing • Small end of the growth chart – Not quite malnourished, but not healthy – “Failure to thrive” – Can be lots of causes: GH, lead poisoning, HIV, parasites – Do a sweat test: measure conc of Cl in sweat Diagnosis • High Cl = Cystic Fibrosis • Recessive gene carried by ~ 10 mil Americans – Sits on arm of chromosome 7 – 1K kids a year diagnosed Pathology • Mutant protein messes with cell’s metabolism of Cl – Cl build up thickens secretions around body – Flow of digestive enzymes from pancreas blocked: less able to absorb food – Thickened mucus covers airways, shrinking lung capacity, till you have none Prognosis Lucky for Annie • She lives in Cincinnati. • C. Childrens Hospital reputation as one of the best in the country – Where the “bible” of the specialty was written – Staff skilled, energetic, dedicated – Staff learns about patients before meeting them – They give you a summary of your visit at the end. • After a meeting: median survival for CF 30 years in Annie’s life that could go to 40 Treatment • Enzyme pills, other supplements, calorie rich diet, percussive therapy to loosen mucus in lungs, inhalant • New life for Annie's family However and but you see • CCHospital not the best, just an average program. • So what? • At an avg. center patients live ~ 30 • At the top ~46 • And for some predictors like Lung capacity CCHospital was in the bottom 25% • And CCH knows these stats. Assumptions vs. Reality • Dif among hospitals & doctors insig. – Everyone’s pretty good • Evidence shows its more like a bell curve What’s the Bell curve mean? • For a hernia operation… – Bottom %: 1 in 10 chance of recurrence – Middle group: 1 in 20 chance – Elite: 1 in 500 • A hernia is a protrusion of a tissue, structure, or part of an organ through the muscular tissue or the membrane by which it is normally contained • For N.I.C.U. death rates: 16, 10, 6 % • In vitro fertilization attempts: 15, 40, 65 % success rates • SOME PLACES ARE BETTER THAN OTHERS • Are all Dr.s doing the best job they can? • Giving patients the best chance? • Should Drs have published win/loss records? Should teachers? • Healthgrades.com will tell you basic stuff – Fired before? Criminal record? – But you want to know more than that • But detailed comparisons get hard – 86-92 the gov. released a “death list” ranking hospitals by death rate of elderly and disabled patients on medicare. – Why is this a useless list? • Most elderly/disabled are already sick to begin with. • Public ignored rankings • Why is death rate for average patients a poor indicator? • It rarely happens and when it does its inevitable; cancer, car crashes • What do you really want to know about your Dr? • How doctors do in the typical stuff • Measure of the process • What steps do they take along the way • This huge load of paperwork is now being studied. • USNews&WorldReport ranks hosptials by – Ability to excel at treating a variety of demanding illnesses within a specialty, affiliations with medical schools, surveys of physicians, reputation, d.rate, advanced facilities Back to CF • CFF Always been ahead in recording care • In the 1960’s a guy named LeRoy Matthews drove everyone crazy. – I’m way better than everyone else – My mortality is 2%, everyone else’s is 20% – No one knew so they did a study and he was exaggerating, but he was better than everyone else – Just like me. Be a positive deviant • Matthews tried every new approach, hounded his patients to treat themselves • He was aggressive from the start. • So everyone started doing what he did and CF mortality declined • Matthews has stayed ahead of the bell curve even as everyone else improved. – Avg 30 years vs. 46 • It’s tough explaining why variability remains. • CF Is incredibly standardized. We know how to do it right. • What happens when patients find out about variability? • CChospital decides to tell patients where they are on the bell curve. • Why? They got a boatload of $ from a guy named Don Berwick Berwick • Former pediatrician; founded Institute for Healthcare improvement – Gives out big $ for trying new ideas – Harvard Prof. • 2002 Modern Healthcare called him the 3rd most powerful person in American healthcare after the secretary of health and human services 1st, head of medicare & medicaid 2nd, where is surgeon general? • Good paper idea: Who is currently the top 3 most powerful people in healthcare in the U.S.? Why is Berwick powerful • Because of how he thinks • What happens to flawed organizations in a disaster? – Firefighters in a forest fire – Students in a school shooting. – Cthulhu, Godzilla, or zombie outbreak, – Indiv. Lose the ability to think as indiv, and act together. • This is happening to medicine Berwick’s solution • Measure processes • Be more open about what we are doing – Patients should have total access – No secrets – This is a moral good, he claims – Is it? • Should students have total access to what teachers do, if that’s the case should teachers have total access to what students do? Berwick got his $ from Robert Wood Johnson Foundation • nation’s largest NP Org. devoted exclusively to health. • $10 billion in assets, generating grants approaching $500 million a year • From 91 -03 spent 446 mil fighting tobaccoo cos • Now using lessons from that to target obesity. • Opposed by tobaccoo and alcohol groups • The guy who made Johnson & Johnson – WWII Brigadier Gen. CChospital tells its patients where it stands • They didn’t make excuses, and to the patients they appeared desperate to do better. • Patients stayed because they known these drs/nurses for years, and believed in them. – Why is belief in that sentence? This is science. Other NPO sources of big $ • Howard Hughes Memorial Institute – Worth ~16.3 bil, – For years Hughes was the sole trustee and put all of his companies stocks into it, making a huge defense contractor a tax exempt entity – The man • Wellcome Trust in UK – Worth ~26.8 Billion So CCH tells the patients • Some patients would leave if things didn’t improve. • The hospital put patients’ families on review committees to assess what the hospital could do. • They got the names of the best CF centers and went there Truth, Justice, The American Way The best • Minnesota CF cntr. At Fairview-University CH in Minneapolis • Headed by Warwick, the guy who originally studied LeRoy Matthews claims in the past • Does whatever he can • They do everything everyone else does, but they do it dif. Compare CCH and MCFC • Teen might be at 67% lung capacity, down from normal 80% • do some Q & A – School? Meds? Calories? • send a nurse home to check • And schedule an earlier return visit than normal • Teen might be at 90 % down from normal 110% (They do better than normal) • Do some Q & A – Same as the other, but they get more intense, aren’t satisfied with answers – Will gently remind patients of mortality until they cry. – FOCUS, AGRRESIVE, INVENTIVE – Don’t like it, go die somewhere else – Not everyone can work with this, but he gets results The Minneapolis looks at it • CF patients are good scientists, they experiment with their treatments. • Sometimes they stop treatment and they don’t get sick and think we’re nuts • BUT: chance of getting sick with CF on any one day is 0.5% • THEN: chance of getting sick with CF on any one day with treatment is 0.05% SO WHAT… • 99.5% chance of health vs 99.95% chance is pretty small on one day. • Over a year that turns into ~83% vs. 16 % • ALL THE SMALL THINGS MAKE A DIF. – Butterfly/Hurricane • Warwick has the bedside manner of Montel Williams, Oprah, Dr. Phil. • And he can improvise, invent, think fast on the • If that 67% teen was with Warwick she’d already have feeding tube in her • Warwick doesn’t wait for national results, he goes with what works. • He’s innovated – Mechanized chest thumping vest – New, powerful ways to cough • So CCH is changing to follow his ways • Current thought is that Drs rely on science and skill. • True that is the basics of what is expected • Aggressiveness, diligence, and ingenuity can pull you out of average. Then everyone has to catch up to you • You have to have the capacity to learn and change and do it faster than everyone else How should the bell curve be used • Fine the bottom half? • Inform patients of your score? • Correlate pay with ranking? • Probably • Insurance co’s hold back 10% of payments until specific goals are met • Medicare won’t pay for intestinal transplants until surgeons have good track record Raises questions • WHO GETS TO GRADE? • Are they grading the right things • Is there shame in being average? – Not for some things – But If you’re a professional there is.