Friday, January 13, 2012

Behavioral and Social Science Foundations for Future Physicians - Association of American Medical Colleges

Health is a product of the interactions among biology, genetics, behavior, relationships,cure them.

Medicine now faces complex societal problems like addiction, obesity, violence, and end-of-life care, which require behavioral and social science research and interventions. To take advantage of enormous medical breakthroughs, people must trust, afford,
and have meaningful access to health care. Improving the health of the public involves addressing health disparities and ensuring patient safety, as well as engaging the social and political aspects of health care governance, financing, and delivery.

Behavioral and social science research and practice have generated significant improvements in the health of the public, reduced tobacco use and diet modifi- cations being two prominent examples. Our deepening understanding of mind/ body interactions and effective methods of changing health behavior have also led to health improvements. Biobehavioral approaches are effective in treating mental illness and substance abuse, and in managing chronic illness. The sights of behavioral and social sciences in health care are set on learning theory's contribution to neurological disease, memory research, gene-environment interactions, and influences of social integration on health (1). The sciences that undergird these areas of improvement and promise are critical ingredients in the training of future physicians.

A complete medical education must include, alongside the physical and biological science, the perspectives and findings that flow from the behavioral and social sciences. Medical educators now face the challenge of how best to teach

behavioral and social sciences to students and professionals. Physicians fortified with the knowledge, skills, and attitudes outlined in this report will be equipped to provide outstanding patient care, address unanswered questions about human health, and fulfill the mandate to improve the public's health. The panel offers the recommendations
that follow to guide medical educators in fulfilling their duties toward students and the patients who entrust to us their care.

Full report:

New AAMC Report Stresses Role of Behavioral and Social Sciences in Medical Education - AAMC

Understanding how lifestyle, behavior, and economic status affect health, and applying this knowledge to medical practice is vital for future physicians, according to a new report from the AAMC (Association of American Medical Colleges).   ����������������������������������������������������������������������������"Behavioral and Social Science Foundations for Future Physicians"  is designed to help medical educators understand what behavioral and social sciences to include in their curricula, and provides a framework to help prepare future physicians to address complex social challenges and unhealthy behaviors that can lead to premature death, chronic disease, and health care disparities.

"In addition to medical knowledge, a well-rounded physician must understand the cultural, familial, economic, and demographic factors that affect health and disease," said AAMC President and CEO Darrell G. Kirch, M.D.  "To deliver quality patient-centered care, today's doctors need to be equipped with effective methods to help people change behavior to optimize health."

Behaviors and the social determinants of health such as smoking, diet, exercise, and socioeconomic status account for more than 50 percent of premature disease and death in the nation, according to the report.  Behavioral and social sciences can assist physicians in developing the right questions and identifying concepts from these disciplines that will provide insight into the many influences on health.   For example, applying principles from psychology, epidemiology, or political science can help a physician caring for a newly diagnosed breast cancer patient.  By taking into consideration a patient's available support system, access to health care, and how breast cancer is distributed across populations, a physician is in a better position to develop an effective health strategy for treating the disease.

Developed by an expert panel of physicians, scientists, and educators, the report draws from earlier publications that identified key behavioral and social science domains, professional roles for physicians, and supporting competencies.  This new report combines the two, creating a teaching and learning matrix that easily can be applied in a clinical setting.   It also provides competency frameworks, methods for evaluating professional behaviors, educational strategies, and performance outcomes. 

The report is the companion to "Scientific Foundations for Future Physicians,"  a 2009 publication released by the AAMC and the Howard Hughes Medical Institute (HHMI) that developed competencies related to the biological, physical, genetic, molecular, and mathematical sciences, as well as foundations of knowledge and reasoning.

Thursday, January 12, 2012

The anatomy of a ripoff - NY Daily News

In September, my teenage son was rushed by ambulance from the Renaissance Fair in Tuxedo, N.Y., to Good Samaritan Hospital in Suffern after choking on a piece of turkey. The care he received was appropriate; the bill was anything but.
The charges, in fact, were mind-boggling. A statement the hospital sent to my insurance company, Aetna, showed that Good Samaritan billed $22,214.92 for a four-hour emergency room visit that included a physical exam, sedation, endoscopy and extraction of the stuck food.
Even more astonishing, Aetna agreed to pay only $2,885.67 for the services — just 13% of the bill — and the hospital settled for that amount.
How could those numbers possibly be reconciled?
To shed light on the real value of the medical services my son received, I consulted with billing experts and with administrators at Aetna — though not with representatives of Good Samaritan, who refused to return repeated phone calls. It also happened that my son had a second choking episode two weeks after the first, and the charges for his treatment at Somerset Hospital in Pennsylvania were included on the same Aetna statement. So I was able to compare bills for similar procedures at two emergency rooms.
What I learned was that the numbers printed on hospital bills often bear no relation to reality.
That hospitals grossly inflate their charges, expecting insurance companies to radically cut the bills while hoping to wring bigger fees out of the uninsured. That the bill inflation can include double-charging for procedures.
As but one example of what I discovered, consider Ondansetron HCl, an anti-nausea medication that both hospitals administered to my son. Good Samaritan charged $439.90 for the drug; Aetna allowed $77.63. Somerset charged $6.52; Aetna paid $3.26.
Medicare pays 17 cents per dose.
This confusion is reflected up and down the bill, with multiple, conflicting prices for each medication and procedure. There are the sky-high costs that a hospital will claim reflect its expenses, and the much lower fees it accepts under contract with insurance companies. What's missing from this complex web is any hint of what the services a patient received actually cost.
The driving force behind all this, according to Aetna, is the way hospitals and the government do business.
The rates that insurance companies pay are negotiated based on what they believe a hospital's true costs are. But then those rates are jacked up an average of 30% to 50% to make up for money that hospitals lose in treating patients who don't have private insurance — which is the majority of them. So to make up the difference, they overcharge patients who are insured. This practice is called cost-shifting.
More ...

U.S. survey finds respondents' stress level far from ideal -

News flash: Americans are stressed out.

On a scale of 1 to 10, residents of eight U.S. metropolitan areas told psychologists they rated their level of stress as 5.2, according to survey results released Wednesday. That may not sound so terrible — except that these Americans also said their ideal level of stress would be around 3.6.

"Have we reached the point of becoming a chronically stressed nation?" said Michael Ritz, a clinical psychologist in Irvine who serves as the public education coordinator for the California Psychological Assn. "The data might suggest we've reached that point where it just [becomes] a fact of life."

Concerns about work, the economy and money were the main sources of all this stress, according to the survey conducted by the American Psychological Assn. Understandably, 44% of the 1,226 people who participated in the nationwide study said they were more stressed now than they were five years ago.

But 27% of respondents said their stress had receded over that period.

"The data actually surprised me, because it seems stress should be more prevalent in terms of the economy, people's concerns about unemployment, about making ends meet," Ritz said.

Residents of Los Angeles and Orange counties are about as stressed as the rest of America — but they're probably better equipped to deal with it, the survey found.

For instance, they said their ideal level of stress was 3.9, so their actual stress level of 5.3 wasn't as far off the mark as in the country as a whole.

And, according to the study, more adults in the two counties say they've done better at eating more healthfully than Americans overall (48% versus 44%), exercising more (45% versus 39%) and losing weight (39% versus 30%).

"It's possible that it has to do with the climate," said UCLA clinical psychologist Emanuel Maidenberg, who wasn't involved in the survey. "There are more opportunities to use natural resources and be outdoors to do things that are involved in stress reduction, like physical exercise."

Residents of the two counties are also more inclined to seek professional help to deal with their stress, the survey found. Significantly more agreed that a psychologist could help with managing stress (51%) than did Americans in general (41%).

Overall, of the eight major metropolitan areas surveyed, Los Angeles and Orange counties were probably best prepared to better cope with stress, Ritz and Maidenberg agreed. And that could translate into better physical health in addition to better mental health.

"Stress contributes to chronic illnesses, like heart disease, diabetes and obesity," Ritz said, adding that about three-fourths of healthcare dollars go to dealing with chronic maladies.,0,7275379.story

Do We Need Doctors Or Algorithms? - Vinod Khosla | TechCrunch

I was asked about a year ago at a talk about energy what I was doing about the other large social problems, namely health care and education. Surprised, I flippantly responded that the best solution was to get rid of doctors and teachers and let your computers do the work, 24/7 and with consistent quality.

Later, I got to cogitating about what I had said and why, and how embarrassingly wrong that might be. But the more I think about it the more I feel my gut reaction was probably right. The beginnings of "Doctor Algorithm" or Dr. A for short, most likely (and that does not mean "certainly" or "maybe") will be much criticized. We'll see all sorts of press wisdom decrying "they don't work" or "look at all the silly things they come up with." But Dr A. will get better and better and will go from providing "bionic assistance" to second opinions to assisting doctors to providing first opinions and as referral computers (with complete and accurate synopses and all possible hypotheses of the hardest cases) to the best 20% of the human breed doctors. And who knows what will happen beyond that?

Assessing Current Healthcare

Let's start with healthcare (or sickcare, as many knowledgeable people call it). Think about what happens when you visit a doctor. You have to physically go to the hospital or some office, where you wait (with no real predictability for how long), and then the nurse probably takes you in and checks your vitals. Only after all this does the doctor show up and, after some friendly banter, asks you to describe your own symptoms. The doctor assesses them and hunts around (probably in your throat or lungs) for clues as to their source, provides the diagnosis, writes a prescription, and sends you off.

The entire encounter should take no more than 15 minutes and usually takes probably less than that. Sometimes a test or two may be ordered, if you can afford it. And, as we all know, most of the time, it turns out to be some routine diagnosis with a standard treatment . . . something a computer algorithm could do if the treatment involved no harm, or at least do as well as the median doctor (I am not talking about the top 20% of doctors here—80% of doctors are below the "top 20%" but that is hard for people to intuit!).

So what's wrong with this situation? This is by no means an exhaustive list, but it sets up a nice springboard:

  • Physically having to go to your doctor's office makes sense for the most part, except that a lot of the basic tests are either visual (tongue and throat check) or auditory (listening to the breath and vibrations in the abdomen). Time plus cost will often discourage people from taking that first step to visit a doctor. Most of the time a Dr. A could at least advise you when it is worth visiting based on your normal body functions, your current indications, and your locality's current infections and other symptom trends.
  • A lot of the vitals being tested for (e.g. blood pressure, pulse) can now be routinely done at home or even with the help of an iPhone and an explosion of additional possibilities will emerge in the next decade.
  • You are the one telling the doctor your symptoms.
  • The doctor has to inquire (probably every time) into any possible history of each symptom, test results, and illnesses, except when he does not have time for you in that village in India.
  • The prescriptions are still done on paper, requiring you to, again, physically go to a pharmacy and pick up what you need there. So compliance is an issue.

Looking at this, I cannot help but think that this is a completely antiquated system (regardless of whether it is healthcare or not)!

Going down the list, we find a pretty negative assessment. The vital signs could all be determined with the help of mobile devices, the operation of which do not require years of training and a certification. You will be able to do this by yourself—Philips already is using the iPhone camera to try to measure vital indicators, others will be even more innovative and as an insurance company it would be cost-effective to give them to every insured person for free.  Skin Scan  is measuring your risk of skin cancer from a photograph of a skin lesion. Telemedicine is accelerating and a Qualcomm company is measuring heart rates using an iPhone. Cell phones that display your vital signs and take ultrasound images of your heart or abdomen are in the offing as well as genetic scans of malignant cells that match your cancer to the most effective treatment. Ear infection and skin rash pictures and more will all be mobile phone based, often supplemented by the kind of (fractal) analysis that Skin Scan does, and more than what the doctors naked eye could usually see.

The history of symptoms, illnesses, and test results could be accessed, processed, and assessed by a computer to see any correlation or trends with the patient's past. You are the one providing the doctor with the symptoms anyway after all!

Any follow-up hunts for clues could again be done with mobile devices. The prescriptions—along with the medical records—could relocate to electronic and digital methods, saving paper, reducing bureaucracy, and easing the healing process. If 90% of the time the doctor knows exactly the right kind of diagnosis from these very few and superficial inputs (we haven't even considered genetics yet!), does it really require 10+ years of intense education for every diagnostician?

The fault is not entirely with the doctors, though. Most of us don't know what set of symptoms warrant the full-scale attention of medical personnel, so we either go all the time or we do not go at all (save for emergencies). We also cannot realistically expect any (even our family) doctor to remember every single symptom and test result over the years, definitely not in a government hospital in China. Similarly, we cannot expect our doctor to be able to remember everything from medical school twenty years ago or memorize the whole Physicians Desk Reference (PDR) and to know everything from the latest research, and so on and so forth. This is why, every time I visit the doctor, I like to get a second opinion. I do my Internet research and feel much better.

Identifying Emerging Trends In Healthcare

But I always wonder why I cannot input my specific test numbers and have a system offer me a "second opinion" on the diagnosis since it has all the data that the doctor has and can use all my current and historical data effectively. In fact, it is not hard to imagine it having more data than the doctor has since my full patient record would be at the tip of its digital brain, unlike the average doctor who probably doesn't remember my blood glucose levels or my ferritin from two years ago. He does not remember all the complex correlations from med school in which ferritin matters—there are three thousand or more metabolic pathways, I was once told, in the human body and they impact each other in very complex ways. These tasks are perfect for a computer to model as "systems biology" researchers are trying to do.

Add to it my baseline numbers from when I was not sick, which most doctors don't have and if they did 80% of physicians would be too lazy to use or not know how to use. Applied Proteomics can extract tens of gigabytes of proteomics—what my genes are actually doing instead of what they can do—baseline data from one drop of blood. Oh, by the way I have my 23andMe data to add my genetic propensities (howsoever imprecise today, but improving rapidly with time and more data). The doctor uses a lot of imprecise judgments too as most good doctors will readily admit. My very good doctor did not check that I have relative insensitivity, genetically, to Metformin, a diabetes drug. It is easy to input the PDR (the Physicians Desk Reference), the massively thick, small-font book that all physicians are supposed to know backwards and forwards. They often don't remember everything they read, in med school but it is a piece of cake for computers. The book on your typical doctor's desk is probably not current on the leading-edge science either. Confirmed science and emerging science are different things and each has a role. Doctors mostly use confirmed science, the average doctor not understanding and pros and cons of each or the expected value of a treatment (benefit and harm). And our 18th century tradition of "first do no harm" dictates that if a treatment hurts ten patients a year but saves a thousand lives we reject it.

With enough examples, today's techniques for language translation (or newer techniques) can translate from human lingo for symptoms ("I feel itchy" or "buzzy" or "reddish bubbly rash with pimples" or "less energy in the morning" or "sort of a stretch in my tendon" and the myriad of imprecise ways symptoms are described and results interpreted  — these are highly amenable to big data analysis) into medical lingo matching the PDR. With easy input of real medical results into a computer and long-standing historical data per patient and per population, which a human cannot possibly handle, and patient and population genetics, I suspect getting a second opinion of my diagnosis from Dr. A is a reasonable expectation, and it should certainly be better than a middling physician's (especially in less developed countries like India, where there is a dire shortage of trained physicians).

I may still need a surgeon (though robotic surgeons like those from Intuitive Surgical are on the way too) or other specialists for some tasks for a little while and the software may move from "second opinion" (in three years? Or seven?) to "bionic software" for the physicians (in five or ten years, with enough patient data?).  Bionic software, again, defined here as software which augments and amplifies human understanding.

But I doubt very much if within 10-15 years (given continued investment and innovation and keeping the AMA from quashing such efforts politically) I won't be able to ask Siri's great great grandchild (Version 9.0?) for an opinion far more accurate than the one I get today from the average physician. Instead of asking Siri 9.0, "I feel like sushi" or "where can I dispose a body" (try it…it's fairly accurate!) and with your iPhone X or Android Y with all the power of IBM's current Watson computer in the mobile phone and an even more powerful "Nvidia times 10-100" server which will cost far less than med school with terabytes or petabytes of data on hundreds of millions (billions?) of patients, including their complete genomics and proteomics (each sample costing about the same as a typical blood test).

IBM's Watson computer, I understand, is now being applied to medical diagnosis after handling imprecise and vague tasks like winning at Jeopardy, which experts a few years ago would have said could not be done. "Computers cannot match the judgment of humans on these kinds of tasks!" And with enough data, medical diagnosis or 90% of it is an easier task than Jeopardy.

Already Kaiser Permanent already has 10 million real-time medical records with details of 30,000,000 e-visits last year with caregivers and computer modeling of key diseases per individual that data scientists would love to get their hand on. Already, according to IDC 14% of the US population is using their phones for medical help and 200 million health and fitness related mobile applications have been downloaded according to pyramid research. Fun stuff, though early. They are probably two generations away from systems that are actually useful.

A more elaborate vision, one that is not very useful today because of lack of enough data and enough science, is defined in Experimental Man and websites like Quantified Self. Though they feel like toys today, they are much further along than the mobile phone was pre-iPhone in January of 2007. And data, the key ingredient to useful analysis, and diagnosis, is starting to explode exponentially—be it genetic data, proteomic data or physical data about my steps, my exercises, my stress levels or my normal heart and respiration rates.

My UP wristband or something like it (disclosure: I am an investor in Jawbone)) will know all my sleep patterns when I am healthy and how many steps I take each day and may have more data on my mobility if I ever get depressed than any psychiatrist ever will know what to do with. Within a few years, my band will know my heart rate at all times, my respiration rate, my galvanic skin resistance (one parameter among multiple ones used to measure my stress level), my metabolic rate (should cost about $10 to add to the band by measuring my CO2 in my breath and may detect changes in my body chemistry too like when I get a certain type of cancer and traces of it show up in my breath).

All my "health data" as well as my "sick data" and my "activity data" will be accessible to Dr. A (and location when I was stressed or breathing hard or getting the allergic reaction and what chemicals were nearby or in the air—did toluene exposure cause me to break out in a rash from that new carpet or trigger a systemic reaction from my body?). I doubt I will be prescribed an arthritis medicine without Dr. A knowing my genetics and the genetics of my autoimmune disease. Or a cancer medicine without the genetics of my cancer when the genetic sequence (once per life) costs far less than a single dose of medicine. In fact all my infectious disease treatments may be based on analysis of my full genome and my history of exposure to viruses, bacteria and toxic chemicals.

Constant everyday health data from non-medical devices will swamp the "sickness tests" used in most medical diagnosis and be supplemented by detailed genetic, proteomic and sick data with bionic software and machine learning systems. Siri might even remind me one day that my heart rate while sleeping has gone up abnormally over the last year, so I should go run some heart sickness cardiograms or imaging tests. Obviously, Siri's children and its server friends will be able to keep up with the latest research and decide on optimal strategies based on patient preference ("I prefer to live longer even if it means all the fancy treatments" or "I want to live a normal life and die. I prefer to spend more of my time with my children than at the hospital" or "I like taking risky treatments"). They will take into account known research, early pioneering approaches, very complex interrelationships and much more.

My best guess is that today a physician's bias makes all these personal decisions for patients in a majority of the cases without the patient (or sometimes even the physician) realizing what "preferences " are being incorporated into their recommendations. The situation gets worse the less educated or economically less well-off the patient is, such as in developing countries, in my estimation.

Envisioning Future Healthcare

Eventually, we won't need the average doctor and will have much better and cheaper care for 90-99% of our medical needs. We will still need to leverage the top 10 or 20% of doctors (at least for the next two decades) to help that bionic software get better at diagnosis. So a world mostly without doctors (at least average ones) is not only not reasonable, but also more likely than not. There will be exceptions, and plenty of stories around these exceptions, but what I am talking about will most likely be the rule and doctors may be the exception rather than the other way around.

However fictionalized, we will be aiming to produce doctors like Gregory House who solve biomedical puzzles beyond our best input ability. And India, China and other countries may not have to worry about the investment in massive healthcare or massive inequalities in the type of physicians they might have access to. And hopefully our bionic software (or independent software someday) will be free of the influence of heavily marketed but only minimally effective drugs or treatment regimes or branding campaigns against generics or lower-cost and equally effective, more affordable drugs and treatments. Dr. A will be able to do a cost optimization too both at the patient level and at the policy level (but we may choose, at least for a decade or two, to reject its recommendations—we will still be free to be stupid or political).

What is important to realize is how medical education and the medical profession will change toward the better as a result of these trends. The vision I am proposing here, though, is one in which those decades of learning and experience are used where they actually matter. We consider doctors some of the most learned people in our society. We should aim to use their time and knowledge in the most efficient manner possible. And everybody should have access to the skills of the very best ones instead of only having access to the average doctor. And the not so "Dr. House' doctors will help us with better patient skills, bedside manners, empathy, advice and caring, and they will have more time for that too. If computers can drive cars and deal with all the knowledge in jeopardy, surely their next to next to next…generation can do diagnosis, treatment and teaching in these far less uncertain domains and with a lot more data. Further the equalizing impact of both electronic doctors and teaching environments has hugely positive social implications. Besides, who wants to be treated by an "average" doctor? And who does not want to be an empowered patient?

The best way to predict this future is not to extrapolate the past and what has or has not worked, but to invent the future we want, the one we believe possible!

Tuesday, January 10, 2012

A Simple Soda Tax Could Cut America's Health Care Tab By $17 Billion - Business Insider

Americans love guzzling their sports drinks and soda, but getting every state to slap a one cent tax on the beverages might be a stretch.

new study published in the journal Health Affairs posits that taxing one-cent per ounce on sodas might cut consumption by as much as 15 percent for Americans 25 to 64.

We drink 13.8 billion gallons of the sweet stuff each year which comes out to 70,000 calories or 45 gallons per person.

The team, led by Columbia University's Claire Wang, estimates the tax would shave $17 billion off related health care costs and boost America's revenue by $13 billion (if enacted in 2010).

The tax could also sidetrack our diabetes and obesity epidemics, as the drinks are linked to both. The authors explain:

"Over the period 2010–20, the tax was estimated to prevent 2.4 million diabetes person-years, 95,000 coronary heart events, 8,000 strokes, and 26,000 premature deaths, while avoiding more than $17 billion in medical costs. In addition to generating approximately $13 billion in annual tax revenue, a modest tax on sugar-sweetened beverages could reduce the adverse health and cost burdens of obesity, diabetes, and cardiovascular diseases."

More than a dozen states levy a soda tax, just not at the rate proposed here. Soda taxing is a hot-button topic, much like obesity and cigarette smoking. But whether such a tax would cut consumption remains unclear. A 2009 study published in the New England Journal of Public Medicine found that such taxes would be "too small" to cut consumption, while "the revenues are not earmarked for programs related to health."

The American Beverage Association offered a different take: "This paper is nothing more than another attempt by researchers and their supporters who have long advocated discriminatory taxes on beverages to promote a beverage tax, which will have no impact on public health. Consumers do not support these taxes and recognize them for what they truly are – a money grab to raise revenue, as noted by the authors themselves."

Really? Can You Die of a Broken Heart? -

The emotional pain of losing a loved one can take a toll on the heart, at least metaphorically. But can it trigger an actualheart attack?

In a large new study, scientists have confirmed what the medical world has long suspected: The so-called broken-heart syndrome is real. The study, published on Monday in Circulation: Journal of the American Heart Association, found that a person's heart attack risk is 21 times higher than normal the day after a loved one dies.

Over time the risk of an attack declines, but it remains elevated within that first month. In the first week after a loved one's death, for example, the risk was six times higher than normal, said Elizabeth Mostofsky, the lead author of the paper and a postdoctoral research fellow at Beth Israel Deaconess Medical Center in Boston.

"If a bereaved person is having symptoms like chest pain, they shouldn't simply say, 'Oh, I'm dealing with the stress right now' and ignore it," she said.

Other studies have uncovered greater heart and mortality risks in the weeks and months after the loss of a spouse, a child or another loved one, but the new study is the first systematic look at the immediate effect. The researchers interviewed nearly 2,000 people hospitalized for heart attacks over a five-year period and controlled for variables like health and history of disease.

Those with previous heart risk factors were more vulnerable, but the odds increased even for those with no coronary history. Dr. Mostofsky pointed out that bereavement could provoke depression, anger and anxiety, all of which can elevate the heart rate and blood pressure and increase blood clotting.

OpenNotes Project

OpenNotes is a demonstration and evaluation project exploring what happens when the medical record becomes far more transparent than in the past. Through their health systems' secure websites, primary care doctors are inviting their patients to read the notes they write about them following visits, e-mail correspondence, or phone conversations. More than 100 doctors and 20,000 patients are participating.

The study is being conducted at Beth Israel Deaconess Medical Center in Boston,Geisinger Health System and its primary care practices in rural Pennsylvania, andHarborview Medical Center in Seattle. It is supported by a major grant from theRobert Wood Johnson Foundation Pioneer Portfolio, supplemented by grants from the Drane Family Fund, the Koplow Family Foundation, and the Katz Family Foundation.

In the July 20, 2010 issue of the Annals of Internal Medicine, the OpenNotes investigators published a Perspective: "OpenNotes: Doctors and Patients Signing On."It explores in some detail the issues our project addresses. On December 20, 2011, the OpenNotes baseline, pre-intervention findings were published, also in the Annals, in a paper entitled, "Inviting Patients to Read Their Doctors' Notes: Patients and Doctors Look Ahead." The Annals is kindly providing both the Perspective articleand the baseline findings paper free on its website.

A study encourages people to take the doctor’s notes home after exams. -

In an old "Seinfeld" episode, Elaine goes to see a dermatologist about a rash, and is left sitting on the table in the exam room, alone with her medical chart. She opens the folder and almost immediately makes a sour face.

" 'Difficult'?" she says, reading aloud.

Let's face it: We've all tried to imagine what the doctor's been scribbling during our visits, what is to be found in that intimate record of frailties and phobias that we never see, even though it is all about us.

"The medical record is information that really belongs to the patient, but it's treated like a classified document," said Susan B. Frampton, president of Planetree, a nonprofit organization based in Derby, Conn., that promotes patient-centered approaches to health care. "It's symbolic of the power differential in health care."

Patients have a legal right to their records, though access can prove difficult. What would happen if patients were encouraged not just to see their medical records but to take them home, study them and really own them?

A research collaboration called OpenNotes has set out to answer this question, publishing the first results of a study on physician and patient attitudes toward shared medical records last month in Annals of Internal Medicine. For patients, at least, this seems to be an idea whose time has come.

The goal, said Dr. Tom Delbanco, a principal investigator of the study, is to engage patients more fully in their own health.

"That's the great challenge in medicine: getting patients to be more active in their own care," said Dr. Delbanco, a professor of medicine at Harvard Medical School. "What we're doing is opening the black box and letting you look inside."

Ultimately, he and the study's lead author, Jan Walker, a member of the research faculty at Beth Israel Deaconess Medical Center in Boston, envision a record that is jointly written: with physician and patient input information, with some negotiation about the details and an agreement on how to proceed.

Dr. Delbanco and his colleagues recruited more than 100 primary care doctors who were already using electronic health records to volunteer to share their medical notes with patients. The researchers asked both participating doctors and doctors who declined to join the project about expectations and concerns, and surveyed nearly 38,000 patients.

The patients were from three very different communities: Beth Israel Deaconess, Geisinger Health System of Danville, Penn., and Harborview Medical Center in Seattle.

Doctors were ambivalent about opening their records, concerned that patients would demand more of their time as a result, or be worried and confused, said Ms. Walker, the study's senior author. But patients were enthusiastic: 90 percent thought they would be more in control of their care if they saw the notes. They weren't worried about being confused. Most said seeing the record would help them take better care of themselves: They would better remember the treatment plan, understand it and take their medication.

"Knowledge is power," Ms. Walker said. "A patient goes to the doctor only once in a while, but in between visits, you're making all kinds of decisions that affect your health every single day."

Candice Wolk, a 39-year-old mother from the Boston area who just gave birth to twins, is a good example. During her first pregnancy checkup, her obstetrician noticed a dark spot on her back and suggested she follow up with a dermatologist. But in the excitement about her pregnancy, she forgot — until she read over the notes from her visit.

Even before M. D. Anderson Cancer Center in Houston started using electronic medical records, administrators gave patients their paper files to carry from doctor to doctor.

Now, cancer patients say having password-protected access to their electronic records helps them absorb complex information about treatment and follow lab tests.

"It never upset me, except the first time I read about my bones," said Paul Grabowski, 60, of Houston, who has two forms of blood cancer and has developed bone loss that causes severe pain. "I heard about it from my doctor, but it's different when you read it in black and white."

Open medical records can help H.I.V. patients track viral loads and other disease markers, and motivate patients to take their medication, said Dr. Bob Harrington, a professor of medicine at the University of Washington in Seattle who is medical director of the Harborview Madison H.I.V. Clinic.

For indigent patients, access to records may help even more because they move frequently and their care is often fragmented, said Dr. Joann G. Elmore, professor of medicine at the University of Washington School of Medicine and one of the study authors.

Weight is a particularly sensitive topic in records, the researchers have found. Doctors who use the word "obese" in their notes may risk alienating patients.

"It might be better to say the patient is '20 percent over ideal body weight' rather than 'a jovial obese man came into my clinic,' " said Dr. Thomas W. Feeley, head of the division of anesthesiology and critical care at M. D. Anderson, who co-wrote an editorial accompanying the new study.

Further, experts worry about notes being shared with patients who have mental illness orsubstance abuse problems.

Most doctors do not think that showing patients their records will increase lawsuits; patients may even be able to point out mistakes or omissions. But other concerns remain.

Will physicians' notes change if they know patients are reading them? Will patients withhold information they don't want recorded? Will they be more likely to seek a second or third opinion?

The shared medical record, Dr. Delbanco said, "is a new medicine. It's designed to help more people than it hurts, but invariably it may hurt some patients. Medicines are never perfect."