The role of patients with chronic diseases and their physicians must be clear to both patients and physicians. Physicians are coaches. Patients are players.

This resonates with what’s become my favorite item from Chapter 2 of our white paper, e-Patients: How they can help us heal health care: Preliminary Conclusion #6, which is “The best way to improve healthcare is to make it more collaborative.”

It resonates particularly well with me because my own e-patient community, the kidney cancer group on ACOR.org, taught me that increasingly cancer has become not an immediate threat to life but a chronic condition.  Then, when I read Anticancer: A new way of life, an astounding idea came to my attention: cancer without disease.

Cancer without disease!

Astounding, and I’ve never heard it mentioned elsewhere; but here I am, a living example.  I still have metastases in me, but I don’t have a trace of illness.

And, thank you very much, I’d like to keep it that way.

Funny thing is, though, in my case, I’m getting more advice on how to do that (chronic management, keeping it that way) from my reading than I am from my physicians!  (Especially from reading Anticancer.)  I’ll be talking to them about that.

Patient Voices: Managing Chronic Conditions, Living our Lives

Ted Eytan snapped a photo that captured this session: Patient Involvement Makes People Smile

Here is each person’s story:

Nancy Ortiz, patient advisor: A back injury at age 48 forced her to rest, re-evaluate, and decide to improve her life, starting with her first physical in years.  “My doctor’s first words at my first visit set the tone, ‘How can I help you?’ But the major challenge of living with a chronic disease is that you never get a day off.”

Suzy Menjivar, patient advisor: Recently diagnosed with diabetes after years as a provider in the field: “Now I had to practice what I preach — and I’m in love with carbohydrates!” She is scared of needles, but that is a significant part of diabetes management - “and I know I didn’t want to be a non-compliant patient!” (which got a big laugh from the audience).

Ardes Gardner, patient advisor: Played in the NFL for two years and learned to eat “heavy and hard.” “I ran from diabetes for 10 months. Providers: don’t stop repeating the information, never think your work is in vain. Thank you for constantly shoving that information in my face.” His 10-year-old son is his major motivation to get better and talking openly about his health is his new mission. “No one at my church had diabetes until I stood up. Then everyone came forward.”

During the Q&A, an audience member asked if a provider can create decision points like the ones which prompted Nancy and Ardes to make positive changes in their lives.  Ardes answered, “No, if the patient isn’t ready, they won’t make a change.” He counseled providers to screen for depression and aggressively treat it, but stop the fear-mongering since “it becomes meaningless.” He said that providers can continue to remind patients about how to manage a chronic disease, but the why comes from within each person.

As the audience filed out of the ballroom, I was glad to be heading toward a discussion group which included a “patient advisor,” as 6 out of 25 of the panels did at this conference. As Nancy put it, “Patients have a lot of wisdom.”

How many decades has it taken for cardiologists, practitioners at the apex of the medical profession, to acknowledge that symptoms of heart disease for women may differ from those for men, and for general practitioners to address that fact?  Older women die of heart disease in droves because they are treated too late or ineffectually, or they cannot get the referral.  How long does it take for the public to catch on, or has it?

What is the percentage of women in lucrative cardiology and radiology practices?  (Have you ever met a female cardiologist?)  Who are the star patients of the new “concierge” cardiologists?

Women’s health-and-spirituality movements tend to bypass the system.  Why play on an uneven field?  This is not the same thing as insisting on quality care, however, or documenting unnecessary deaths due to systemic negligence.  Who would support a study of gender bias in cancer detection?  The American Medical Association?  The American Academy of Family Physicians?  The American College of Radiology?  The American Society of Clinical Oncology?  (Try an affirmative action head count on their boards of trustees.  Then compare with The American College of Cardiology.)  How about The National Institutes of Health, or The Centers for Disease Control?  Physicians cannot acknowledge diagnostic error to their patients, they say, due to fear of lawsuits, so who is it who finally reports?

How familiar are we with the one-two punch?  First, the physician brushes aside complaints and belittles patient concerns.  In the case of suspected cancer, this makes early detection impossible.  Second, the insurance industry engages in referral madness, making it nigh impossible to get a qualified second opinion, or, in the case of breast cancer, even to know what that means.

Breast cancer patients are apparently familiar with this scenario, as are mothers of children with cancer.  A chilling thought, indeed.

Who dies and who profits?

The most glaring disparity in health care delivery may be staring us right in the face.  Worse yet, it may have nothing to do with the digital divide.

Previously on e-Patients.net I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times health columnist and breast cancer survivor Jane E. Brody.  The gynecologist who ordered the mammogram refused to authorize a second opinion, however, deferring to the radiologist, who referred me back to the clinic and so on and so forth.

My primary care provider, who carefully reviewed the films and reports (sans compensation), thought a biopsy might be the safe thing.  She was not the referring entity, however.  The clinic was !#$^%$#@

I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity.  In a futile attempt to waste no one’s time except my own, I hand-carried a disc of the imaging studies to the appointment.

Right?

Wrong!

They could not bring the films up on their system, the resident informed me.  (“Oh yeah, that’s right” says the deskperson at Radiology Practice No. 1.  “County can’t read our films.”)  @#%#$

The resident confirmed that this was an abnormal mammogram, which made me feel slightly less inept.  Nonetheless, it was downhill from there.

Why are you here? queried the surgeon.

For a second opinion.

A what?

Well, I wasn’t sure I said, showing them the Brody article, but I thought second opinion meant I wanted another (more expert?) radiologist to read the films and review the recommendation for six-month followup. 

The surgeon referred me to a radiology practice affiliated with a large hospital, the only one in town to offer stereotactic breast biopsy.

After the usual obligatory disclaimers and miscommunication, the films from Radiology Practice No. 1 did indeed arrive at Radiology Practice No. 2.  A scheduler promised that the radiologist would review the films presently.   He would not write a report, however; insurance would not cover it.  I would know his opinion by either thumbs up (biopsy appointment) or not.  No reasoning on the decision would be available to me.

Silly me.  I thought that breast cancer is best caught early and a second opinion is integral to Patient’s Rights.  Inexplicably, confirmation that the cancer detection program in which I was enrolled would cover a second opinion (California law) carried no weight whatsoever with either the clinic, R.P. No.1 or R.P. No. 2.

It was if I had never spoken.

You, Jane Brody and Sheryl Crow

“No one has ever asked for a second opinion before,” said the clinical coordinator of the cancer detection program in explanation of the confusion.  She did not urge me to let up, however.  On the contrary, like virtually every female health care professional I have ever met, she had a story.  Her sister-in-law died from cancer after her doctor ignored complaints about vaginal bleeding.   (Nary an apology when she died, as this story always goes.)   As I write, the same sickening story.  A sixty-two-year-old breast cancer survivor, aunt of a colleague, complained to her doctor of bone pain.  He dismissed the pain as signs of old age — until it turned out to be metastatic cancer, in which case he was perfectly happy to support the murderous double onslaught of radiation and chemotherapy.  What should she do?

While they may share awareness if not rage over the peculiar combination of neglect and arrogance that marks the treatment of women in the U.S. health care system, Jane E. Brody, Sheryl Crow and readers of The New York Times apparently know how to secure a second opinion, women in  rural counties, not.

The call came confirming an appointment for a stereotactic needle biopsy.   The appointment was a total disaster, the next scene, almost too embarrassing to write.

The Knock-out Punch

As she ushered me into the exam room, the nurse handed me a brochure describing the procedure.  (While useful, the information would have been even more useful had I had time to read it.)

“The doctor will talk to you first.”

Hunched over on a stool, miserably eyeing the gray exam table with the opening for my boob to hang through while it was penetrated by a needle and who knows what else, I waited.

Not for long.

Towering over me, technician at his side, the radiologist said he could not understand why a biopsy had been ordered, nor could the colleague who reviewed the films.  He had seen hundreds of films like this.  Unlike Radiologist No. 1, his advice would be to return in a year, not six months.

When asked the obvious — What were the chances of malignancy on microcalcifications of this nature? –  he blasted his way through the legal disclaimer language of Statistics 101, whacking away at the difference between correlation and causality, deriding me and my primary care provider.  Physicians could disagree blah blah blah which is why second opinions often cause confusion blah blah blah.  By the way, women with this condition were twice as likely to develop breast cancer as women without. (I think he said this, but by then I was too mortified to think very well.  Mainly I remember thinking I was glad I had my clothes on.)

Pow!  Pow!  Pow!

The decision to biopsy was ultimately determined by the comfort level of the patient, he explained  (i.e., not by science or evidence-based medicine) (a position which incidentally absolves both the physician and the insurance company of liability).   If that’s what I wanted, they could even send the films to Big Name Medical Center for review.  He personally had the qualifications to work at Big Name Medical Center, but no mind.   My choice.

I was definitely not feeling Tranquilidad Mental, the Peace of Mind advertised in their brochure.

Without getting too tetchy, I explained:  I was an alumna of Big Name University; their children’s hospital had screwed up Big Time on my daughter’s sarcoma case (through arrogance of just this sort); and when I chose a referral site, it was by individual or departmental expertise, not by Big Name.

What did I want to do? he demanded.  We were now in Wasting Physician’s Time territory.

Without report in hand or time to consider the information, hard to say, buddy!

Could I please have a written report of their findings?

No.

Let me get this straight:  Insurance would pay for an unnecessary, expensive, time consuming, painful and invasive procedure to reassure a (silly female) patient about breast cancer, but it would not support a written report (which, coincidentally, commands accountability from both physician and insurance)?

Not putting their opinion in writing was a favor to me, the patient, he insisted.  His office would get stiffed by the insurance company for a bill on a written second opinion, meaning they would have to bill me.  (Apparently the message that the cancer detection program would support a second opinion was beneath his or someone’s notice.  Whatever.  He knew his billing codes.)

In the face of such certitude –  having received my second opinion, I believed, albeit not in writing — I declined the procedure.  The doctor whisked himself away, his body language shouting “Idiot! Fool!”  He had (real) patients to attend to.

The room bereft of all that energy, the technician gently explained that microcalcifications generally fall into three categories:  malignant, indeterminate and not to worry (I am paraphrasing.)  My pattern, the “teacup,” Not To Worry.   For some reason, however, I was unable to pry it out of a doctor, certainly not one who would commit to writing.

Backtracking

If I, a scholar and patient-advocate, could not navigate this system effectively, I explained to the technician and the office manager, what hope was there for a less educated (and persistent) patient?  Where had I gone wrong?

The glitch, in their opinion, came from the surgeon at the county hospital:  He had written an order for a biopsy, not a second opinion.  Without a re-script from the surgeon, their office could not provide a report on findings.  @##@$%^&

Neither woman was dismissive of my concerns about the cluster f*** that is the medical referral system or  the lack of accountability therein.  Both were acutely aware of the propensity of the U.S. healthcare system to kill patients, particularly women, with cancer or suspected cancers.  (“Or even a urinary tract infection,” muttered the technician.)  Both were totally supportive of the physician’s fears of lawsuit.  (“All it takes is one,” the office manager pointed out.)  Both trusted their boss’s judgment, even as they tacitly acknowledged the dynamics that had me on the ropes, in search of the nearest exit.

Jane E. Brody, Help!

Pass the Valium!  Not for a bad outcome (at least I do not think this was a bad outcome).  Nor for lack of a viable second opinion (I hoped).  But for sheer embarrassment.  What was I doing sitting there like a fool, brochure in hand, wasting so many people’s time?

In the case of microcalcifications, what constitutes a second opinion, or a “qualified” second opinion?  Who knows, and who pays?

This is what I (or the surgeon at the county hospital) inadvertently did right.  The second opinion was not an expert opinion per se, meaning review by specialists at tertiary care center, but a “qualified opinion” rendered by radiologists who specialize solely in breast health, meaning they read more mammograms a year and  offer more specialized procedures than does R.P. No. 1.  This Rule of Volume applies to the search for any type of medical expertise.

For  women actually trying to obtain a second opinion on a mammogram without dying of cancer (or embarrassment), the word would be alignment.

You and Your Billing Code

As indicated in recent and somewhat bitter controversies about information technology (IT) on The Health Care Blog, health care reform in its specifics is formulated from the standpoint of the physician-insurance nexus.   The Industry.  As such, disputes tend to revolve primarily (or only) around billing, i.e., relative profit or loss among the various contenders.  Protests aside, the patient is at best an afterthought in these debates –  the Residual Payer, as one physician kindly informed me — which is precisely how much weight the patient carries in these discussions.

Physician practice is aligned with insurance billing codes, not best practices or Patient’s Rights.  In my case, there was no billing code for a written second opinion, therefore no opinion.

The insurance industry has a stranglehold on your physician.  The point at which physician and insurance interests overlap is accountability-transparency.  Ergo the tough language when physicians are queried about best practices (i.e. second opinions), followed shortly thereafter by the disappearing act.

If your physician’s language is obscure (asked why he had not sent my daughter’s pathology materials out for a second opinion, a pediatric oncologist replied “It’s a continuum” [therefore it did not really matter if the tumor was benign or malignant]), if he or she dazzles you with the basics of statistics or probabilities, if your physician seems resigned or angry at you for requesting the wrong thing (a second opinion), if the mostly female staff around them seem tight lipped, it is because physicians are trying to please two masters — the insurance company and the patient.  In truth, they respond only to one.

Apologies to Radiologist No. 1.  His recommendations were conservative in favor of my well being, or at least I thought. The problem was his unwillingness to address discrepancies raised by the Brody article.  Because he could not bill for the time wasted on patient explanation, other health care professionals like my primary care provider ended up picking up the slack.  As for the referral, i.e.,  the “qualified” second opinion with which physicians claim to be perfectly at ease, all he had to do was sit back and let the patient get lost in the spin.

Align Yourself

The next time you are getting flack over a request for a second opinion, you might inquire if billing codes are aligned with best practices.  If not, what does your physician plan to do about it?  (Answer:  bill you.)

Better yet, scream at a politician before the insurance industry re-hijacks health care reform.  As ACOR founder Gilles Frydman points out, however, by design, the workings of the health care industry are so opaque that ordinary folks do not have a clue about where even to start.

There is a movement to transfer a greater piece of the “health reform pie” to primary care providers.  This means financial support for information technology that is interoperable with that of other practices and institutions; increased compensation relative to specialists (who are not paid to talk to you); and an expanded role in coordinating your care, i.e., managing medical records so that you, too, do not get lost in the spin.

There is a Great Debate (if not envy) among physicians about parity with lawyers, meaning a lot of energy is expended in debate over billing practices for patient communication.  The Great Scourge, from the physician perspective, is e-mail.  Coincidentally, e-mail evens out the playing field, sparing the patient the emotional and financial costs of “telephone tag,” plus it forces the physician to commit to writing.  In some circles, this would be known as efficiency and accountability, a spur to good health even –  a putative goal of the Obama administration.  Some physicians rail against e-mail like it is the anti-Christ, at the same time (somewhat inexplicably) ignoring the ridiculous waste of time and money, to say nothing of wear and tear on the patient, that is the existing system.   Call backs, and more call backs . . .  

Breast cancer is primarily a disease of older women.  Given the aging Baby Boomer population, the microcalcification issue is here to stay.  Educate yourself.  Learn your referral network.  Find a doctor to trust.  The decisions may be difficult, even for specialists.

Yes, there is a new national dialogue on health care reform, but is it the right one?  Can one even locate patient interests in the scrum?  Practically and politically, we need to hear from registered nurses, office managers, technicians – middle-level specialists who are familiar with how the health care system operates but are too overworked or intimidated to tell.  (And yes, that would be primarily women, people who are actually sympathetic to fears about breast cancer, sensitive to institutional intimidation.)   Specifically, we need to hear from certified case managers, specially trained health care professionals who are legally required to advocate for the patient, not for the insurance industry.  As I learned from my daughter’s sarcoma case, in instances of life threatening illness, CCMs are your best chance to get a complicated health care team to cohere around the interests of the patient, not the physician, the hospital, or the insurance company.  Insurance companies, understandably, do not emphasize their presence; some will deny you direct access.

Alignment works both ways.  Certainly conventional politics may not be the answer.

Given industry deregulation of the last eight years, it is unlikely that major physician groups and their various professional organizations will de-align from major “stakeholders” (insurance, their payers; pharmaceutical reps, their friends) and ally themselves with patients, at least in the near future.   Nor is it likely that politicians, no matter how well intentioned, will suddenly reframe debates on HIT (health information technology) in terms of patient interests, or software vendors will develop a sudden  philanthropic interest in interoperability.  In the interim, lesser beings in the health care kingdom (the ones with less attitude) might want to educate themselves about e-communities, join forces in the creation of patient-centered participatory medicine.

Synergy awaits.  Masters of the billing code and the referral system, CCMs are among the few health care professionals who can successfully educate you and demystify the system without losing their jobs.  They can explain, for instance, why you are so humiliated when you try to take charge of your health, your physician, so angry.  As you learn to navigate the complicated terrain of health care reform, the thought may occur that if CCMs, like primary care providers, were to get a more substantial piece of the health care reform pie, you, the patient, might be far better off.  If you are going to die of something dumb, at least you will have a clue as to what killed you.

As for me, I am awaiting a phone call from the surgeon.

The summit program is a treasure trove of ideas for conference organizers who want to answer Gilles Frydman’s call to action.

Notice a group missing from that list?

So did the members of NeuroTalk, who called the Michael J. Fox Foundation on the carpet for not including patients in this conversation at the onset.

The resulting discussion caught the eye of the Michael J. Fox Foundation and Michael Rogan, an Associate Director at the Foundation. In his note to the community, he said:

As a result of the SFN presentation, we received a number of inquiries from scientists wishing to sign up now, though PD Online Research will not launch until spring 2009. This led to our issuing a brief announcement last week on the MJFF site, directing scientists to a site where they can submit a membership application.

I am sorry to note that this brief announcement led to upset in the patient community because it described only a part of our efforts and suggested, by its incompleteness, that we were specifically excluding patients from our online plans. I want to take this opportunity to apologize for this poor communication and to stress that including patient voices in our new resources has been a primary consideration from the start and has been the subject of much discussion.

Which is great, but the site initially made no mention of patients being involved in the process (until after the NeuroTalk members started the thread discussing this oversight).

If, indeed, patients were an integral part of the new effort, then they should have been mentioned on the site at its launch. How can you “forget” to add perhaps the most important group of people to such an effort?

So now the MJFF is conducting a survey of patients to try and understand how the group of scientists, researchers and investors (?!) can benefit from their insights. Um, okay. But patients, not investors, are at the core of why you’re doing the things you’re doing. If you don’t know their place in the conversation in the first place, I’m not completely convinced you’re even on the same page as e-patients.

E-patients don’t want to be an afterthought to a community that is hunting down the cure for Parkinson’s. They want to be there, hand in hand with the researchers and the theorists, to try and tackle the problems that diseases like this spread, from perspectives that maybe not all researchers and theorists have thought of.

The Michael J. Fox Foundation is doing great work for Parkinson’s disease. I hope it continues the work by opening up and embracing e-patients in its PD Online Research efforts soon.

I had a whirlwind weekend at the Moscone Center in San Francisco where I broadcast five and a half hours of live interviews with leading hematologists and hematologist/oncologists on the latest news in a variety of chronic conditions. The audience was patients who could ask questions by calling our studio or via email.

We covered chronic myelogenous leukemia (CML) where there are now three life-saving drugs; multiple myeloma where there are now exciting combination therapies, hemophilia and bleeding disorders where regimens are being simplified, sickle cell anemia where monitoring is extending lives, cord blood transplant where the lives of many who now lack donors with current approaches may have new hope, lymphoma where there has been an explosion of research, and finally chronic lymphocytic leukemia (CLL).

I had more than a passing interest in CLL as I have been a CLL survivor for 12 years and was excited to see that the big news from this 50th annual meeting of the American Society of Hematology was worldwide phase III validation of the combination therapy I received in a single center phase II trial 8 years ago.

So there was plenty to report and leading experts from university medical centers, including my own doctor in CLL, were delighted to come down to our interview room near the press room and give their perspective on the latest news, which often included their own high profile study results.

With a small electronic box, about the size of a tissue box, and two microphones and an Internet connection, I was able to transmit these programs to our studio in Florida and stream them live on our web site, www.patientpower.info. The replays are now distributed widely including on the prestigious Oncolink site and on several university medical centers sites and patient advocacy groups. All the content will also be featured soon on Microsoft’s www.healthvault.com.

This was the latest in my efforts to connect patients with chronic conditions with the experts who are making news in those conditions – as it happens – and to allow patients to ask questions in live interviews. It was thrilling, and we had great support from ASH, the society who put on the meeting.

I believe this bridging of the gap between patients and the doctors who educate their doctor will accelerate and to great benefit of patients. I am happy to play a small role.

You can see all 11 interviews at:
http://www.patientpower.info/ashannualmeeting.asp

Let me know what you think and how we can improve on this service.

By the way, there were no pharma sponsors nor involvement in any of this. Frankly, I funded all of this as a service and a bit of an experiment. Medical centers were very helpful and may support this approach in the future.

When an individual patient visits his or her doctor with a problem, traditional clinical diagnosis is made and treatment is administered based on the patient’s symptoms, medical and family history and results of lab tests.

In the e-health world of the 21st century, personalized medicine, a new approach to treatment and analysis of patients’ health issues, promises to revolutionize that process. Personalized medicine looks not only at an individual’s symptoms, labs and medical history but at the individual’s unique clinical genetic and genomic markers to determine a treatment program. Because these factors differ for each human being, the disease they carry and how they will respond to treatment will differ as well. Taking this to another level, personalized medicine enables doctors to make accurate predictions and assumptions not only about an existing condition but to make predictions about a person’s potential to develop a disease. This will enable clinicians to treat patients proactively rather than reactively resulting in a better outcome.

Personalized medicine is gathering momentum as evidenced by the significant attendance and enthusiastic involvement of the participants at the recent conference sponsored by Harvard Medical School and The Center for Genetics and Genomics at Partners Healthcare. Although there was general agreement that personalized medicine is now an accepted way to look at the patient, there are also enormous barriers to its widespread use, including:

· Economic factors such as who will receive and who will pay for genetic testing.

· Issues regarding who will be responsible for building the infrastructure needed to support widespread deployment,

· Concerns about how we amass, use, and protect the vast knowledge base that results from genetic tests.

· Legal questions regarding who owns the genetic test data - the patient, the physician, the institution - and whether or not that information can be used for additional research.

· Unresolved issues regarding standards upon which to build a platform for using personalized medicine

· Discussions about how to structure collaborations amongst all the stakeholders (patients, physicians and scientists) so that personalized medicine advances are translated ultimately into better patient care.

E-patients must be part of the conversation that determines where we are going with personalized medicine because personalized medicine uses genomics to focus not only on disease identification tied to a specific combination of genes in an individual, but also on disease prevention and wellness in which everyone has a high stake.

Better yet, what if it could be implemented at minuscule costs (about $3 million to rollout nationwide), and would require very little change in anyone’s procedure or daily lives?

What if that procedure was something as simple as going down a checklist before running any procedure on a patient?

The New Yorker has the scoop on how implementing simple checklists in intensive care units (ICUs) across the country could save perhaps as many as 28,000 lives a year. How so? Such lists quickly remind professionals of steps that are easily overlooked in patients undergoing more drastic events, and makes explicit the minimum, expected steps in complex processes. A simple checklist can reduce the number of preventable medical errors:

A decade ago, Israeli scientists published a study in which engineers observed patient care in I.C.U.s for twenty-four-hour stretches. They found that the average patient required a hundred and seventy-eight individual actions per day, ranging from administering a drug to suctioning the lungs, and every one of them posed risks. Remarkably, the nurses and doctors were observed to make an error in just one per cent of these actions—but that still amounted to an average of two errors a day with every patient. Intensive care succeeds only when we hold the odds of doing harm low enough for the odds of doing good to prevail.[...]

ICUs are difficult places to practice medicine. Patients require extraordinary care and are usually seen by lots of different professionals throughout the day running routine procedures. But what’s routine to an ICU nurse can also quickly turn into something mundane. When procedures become mundane, the chances of a preventable medical error increases, because the professional isn’t paying as much attention to what they’re doing. And this is where a checklist comes in:

In 2001, though, a critical-care specialist at Johns Hopkins Hospital named Peter Pronovost decided to give it a try. He didn’t attempt to make the checklist cover everything; he designed it to tackle just one problem, the one that nearly killed Anthony DeFilippo: line infections. On a sheet of plain paper, he plotted out the steps to take in order to avoid infections when putting a line in. Doctors are supposed to (1) wash their hands with soap, (2) clean the patient’s skin with chlorhexidine antiseptic, (3) put sterile drapes over the entire patient, (4) wear a sterile mask, hat, gown, and gloves, and (5) put a sterile dressing over the catheter site once the line is in. Check, check, check, check, check. These steps are no-brainers; they have been known and taught for years. So it seemed silly to make a checklist just for them. Still, Pronovost asked the nurses in his I.C.U. to observe the doctors for a month as they put lines into patients, and record how often they completed each step. In more than a third of patients, they skipped at least one.

The next month, he and his team persuaded the hospital administration to authorize nurses to stop doctors if they saw them skipping a step on the checklist; nurses were also to ask them each day whether any lines ought to be removed, so as not to leave them in longer than necessary. This was revolutionary. Nurses have always had their ways of nudging a doctor into doing the right thing, ranging from the gentle reminder (“Um, did you forget to put on your mask, doctor?”) to more forceful methods (I’ve had a nurse bodycheck me when she thought I hadn’t put enough drapes on a patient). But many nurses aren’t sure whether this is their place, or whether a given step is worth a confrontation. (Does it really matter whether a patient’s legs are draped for a line going into the chest?) The new rule made it clear: if doctors didn’t follow every step on the checklist, the nurses would have backup from the administration to intervene.

Pronovost and his colleagues monitored what happened for a year afterward. The results were so dramatic that they weren’t sure whether to believe them: the ten-day line-infection rate went from eleven per cent to zero. So they followed patients for fifteen more months. Only two line infections occurred during the entire period. They calculated that, in this one hospital, the checklist had prevented forty-three infections and eight deaths, and saved two million dollars in costs.[...]

But does it work when you try and roll it out on a state-wide scale? Just ask Michigan:

In December, 2006, the Keystone Initiative published its findings in a landmark article in The New England Journal of Medicine. Within the first three months of the project, the infection rate in Michigan’s I.C.U.s decreased by sixty-six per cent. The typical I.C.U.—including the ones at Sinai-Grace Hospital—cut its quarterly infection rate to zero. Michigan’s infection rates fell so low that its average I.C.U. outperformed ninety per cent of I.C.U.s nationwide. In the Keystone Initiative’s first eighteen months, the hospitals saved an estimated hundred and seventy-five million dollars in costs and more than fifteen hundred lives. The successes have been sustained for almost four years—all because of a stupid little checklist.

While hospital CIOs continue to push EHRs and EMRs in these tough economic times (at a cost of hundreds of millions dollars per state to implement), perhaps they should instead be examining something as simple and as old-school as a piece of paper with some steps printed on it as an equally effective method for saving lives.

Granted, paper isn’t as sexy as some fancy, expensive electronic health record (nor are the two mutually exclusive). But checklists are easier and quicker to implement, have solid research backing, and could begin saving lives tomorrow in any hospital that chooses to implement them.

The New Yorker makes the argument that because a checklist wasn’t invented by some company with a 30-year patent on it, the checklist garners little interest amongst management and boards that are always looking to impress with their race to keep up with the marketing technology and trends:

I called Pronovost recently at Johns Hopkins, where he was on duty in an I.C.U. I asked him how long it would be before the average doctor or nurse is as apt to have a checklist in hand as a stethoscope (which, unlike checklists, has never been proved to make a difference to patient care).

“At the current rate, it will never happen,” he said, as monitors beeped in the background. “The fundamental problem with the quality of American medicine is that we’ve failed to view delivery of health care as a science. The tasks of medical science fall into three buckets. One is understanding disease biology. One is finding effective therapies. And one is insuring those therapies are delivered effectively. That third bucket has been almost totally ignored by research funders, government, and academia. It’s viewed as the art of medicine. That’s a mistake, a huge mistake. And from a taxpayer’s perspective it’s outrageous.” We have a thirty-billion-dollar-a-year National Institutes of Health, he pointed out, which has been a remarkable powerhouse of discovery. But we have no billion-dollar National Institute of Health Care Delivery studying how best to incorporate those discoveries into daily practice.

Sad, but true.

What a novel approach.  What a change from the past when plans were written behind closed doors with little or no input from the public, i.e. the people whose lives are being impacted by the healthcare decisions being made. 

They want people to host Health Care Community discussions in our homes and in our neighborhoods between December 15 and December 31. Could we host a virtual one? Or at least a virtual extension of a physical one?

(I’d also like to host one in my home, official or not. You’re all invited.)
It is thrilling for the public to be invited to participate in the discussion, but with the invitation comes the responsibility to do something.  Perhaps we could use this blog to come up with ideas to answer their request — grand ideas, down to earth ideas, crazy no-way-in-the-world to implement ideas, practical ones that may seem too small to consider.  Let’s take this on as a “you asked for it” challenge.

Perhaps, the change that was promised, will be delivered.

If you were a patient of Dr. Gregory House, you’d be afraid to tell him you’d researched your symptoms on the Internet. House, the lead character on the Fox TV show, would unceremoniously toss his stethoscope at you and proclaim that you are now a doctor as he nonchalantly walked out of his office.

But in the world beyond the television screen, many physicians have come to recognize the value of their patients’ use of the Internet.

And, if you are like most people, you turn to the Internet for health. Eighty-four percent of adult Internet users in the U.S. go online for medical information, according to a 2007 Harris poll. Some of them, like Diana C., believe the Internet saved their life.

The morning after Diana woke up to find a bat in her bedroom, she noticed marks on her shoulder. When they reddened and became itchy, she searched online and identified the marks as bat bites by measuring the distance between the teeth on a life size picture of a bat and comparing that to the marks on her shoulder. She learned that a bat bite can eventually become fatal if not treated within 48 hours.

After rushing to the hospital, Diana saw that the nurse washed her wounds for just 30 seconds, not the five minutes recommended. A doctor told her not to worry about the 48-hour deadline based on his knowledge of rabies in dogs. Diana realized that she knew more about bat bites than some of the professionals treating her. Only through her own vigilant efforts did she receive the care she needed.

Similarly, Jason D. turned to the Internet when his son, who would cough all night, seemed fine at his medical appointments. Jason concluded his son had asthma and requested tests from his son’s doctor that confirmed the diagnosis.

And Saul C. is indebted to the online symptom checker that advised him to seek immediate medical attention when, several days into a cold, his leg began to swell and hurt. He did, despite his fear that the doctor would chastise him for being overweight. The doctor diagnosed and hospitalized Saul with cellulitis and told him that he was lucky he didn’t wait any longer to be treated, and also told him he needed to lose weight.

The Internet is no substitute for a good diagnostician, like Saul’s or Dr. House. Even as a screening tool, the Internet is limited since doctors notice symptoms that you might not, order tests, and expertly consider an abundance of possible diagnoses. However, as Diana saw, doctors may have little experience with particular diseases, and, as Jason learned, a patient’s symptoms may not manifest themselves in the doctor’s office.

The Internet offers immediacy, an advantage at night or on the weekend. It offers anonymity, which is helpful when a symptom seems too embarrassing to discuss with your doctor. It also offers more detailed information than your doctor might have time to provide.

But the Internet also has erroneous information that can lead you to believe that pounds can literally melt away and cures exist for incurable diseases. A recent YouTube video that has been viewed thousands of times depicts a treatment that claims to reverse the effects of the Alzheimer’s disease, for which no cure currently exists. If miracle cures existed, everyone would know about them, including your doctor.

That is one of the reasons you shouldn’t use the Internet in a vacuum. Another is that looking symptoms up online can be confusing — and frightening — when you lack medical expertise, since there are seemingly endless possibilities to consider.

A Pew Internet and American Life study found that 18 percent of online health seekers were confused by the information they found and 10 percent felt frightened by the serious or graphic nature of the information, making it more concerning that only a third of people looking online talked with a doctor or other health professional about the information they found.

“Given that patients are going online, the best thing to do is engage them as partners in care,” said Dr. Bruce Auerbach, president of the Massachusetts Medical Society and a Lexington resident.

He went on to recommend that, when you use the Internet, you “use credible, reliable sites from trusted sources including medical specialty societies, state associations, and recognized organizations such as the American Heart Association and the American Diabetes Association.”

Above all, seek professional treatment immediately if a Web site recommends it or if you aren’t getting better. Talk to your doctor about what you find online, especially if you are confused or concerned. And don’t worry about a scolding à la House.

Finally, if you receive a new diagnosis from your doctor, ask for Web sites where you can learn more about your condition. Chances are, you’ll come away with excellent recommendations.

Lisa Neal Gualtieri is an Adjunct Clinical Professor at Tufts University School of Medicine, where she teaches a course on Online Consumer Health, where e-Patient Dave delivered a guest lecture on Dec. 2. Lisa’s blog on health is at http://lisagualtieri.com.

Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when my five-year-old daughter played the violin.

A week later she had a stroke and could not swallow.

We wanted to leap in and save her, but all we could do was swab her lips with lanolin as she lay gasping for water, or food or perhaps air.

It took days for her to die.  A staunch Presbyterian, an even stauncher Republican, she had worked in her garden nearly every day of her life.  Her heart and lungs were so strong they would not stop, even when we wanted them to stop.

An African-American colleague, raised by a grandmother in an old house in Oakland, refers to death as “crossing over.”  Her family could barely afford air conditioning, much assisted living or serial emergency room visits.

Beginning in her childhood and continuing through every decade of her adulthood, she ushered more than a dozen of her caretakers and relatives into death, watching, waiting for the doctor’s footsteps, praying, listening to the sounds of the old house creaking.  By her 40s, she was both traumatized and death-wise in a way that I would never be.

I envied her.  She had a spiritual concept of dying, not a medicalized one.

I know from the controversial PBS documentary Lion in the House that physicians will do almost anything to avoid the “d” word with families whose children have end-stage cancer.  They discuss treatment options and wait for the other shoe to drop, a dance which seems to drive their support staff insane.  However kind, these physicians do not seem to think too much of the parents, considering them naive or uneducated — irresponsible, perhaps, if they are poor and overwhelmed.  Certainly they, the parents, know little about death.

I know that cancer kids and their parents keep asking The Question in different ways, to be met by the Stone Wall.  “We have exhausted all of our treatment options.  We can do one more round of chemotherapy if that is what you want, but we don’t expect results.”  Their best shot:  “You should prepare yourselves . . .”

I know that parents of children with cancer seem unwilling or unable to distinguish death by poisoning (chemotherapy) versus death by the cancer itself.  (Turning swollen and blue-green would seem to be a clue, or perhaps cardiac failure).  Physicians deliberately blur the distinction.  Certainly drug companies don’t advertise the fact that cancer patients die from chemotherapy, like it’s a big secret.

Children in a Buddhist village in Thailand know more about death and dying than most Americans.  The Thai do not pack their elderly off to hospitals and assisted living.  Even royalty do not pack their dead into morgues or coolers.  Family members sit with their loved ones as they die.  The bodies are taken to the Buddhist temple for cremation.

A man brought his elderly father to chat with the abbot of a temple in Northeast Thailand.  “Get a doctor!” I wanted to scream as an old man ran through a litany of medical complaints.  ”That is how it is,” the abbot responded calmly.  “Life is suffering.”  Together father and son made an offering, “making merit” (tham bun) for the next life.  The monk chanted blessings.  The pair went away, peaceful and accepting.

Meditation is popular with laymen as well as monks in Thailand.  Buddhist doctrine states that life is suffering and suffering is caused by attachment, in particular, attachment (grasping) to the illusion of permanence.  Depending on the teacher’s judgment, meditation subjects may include a Buddha image (peaceful detachment, control of the mind and senses); a lotus (beauty, impermanence); the entire life cycle (birth, youth, sickness, old age, death); or, for the spiritually intrepid, corpses.

The American approach:  “Listen to Dr. Oz.  Eat salmon.  We can delay aging.”

In cultures less modern than ours, shamans or spiritual specialists usher the dying into the next life, offering knowledge and comfort to those who remain.  The only equivalent in American culture, aside from rabbis and priests and ministers, is hospice care.  I have yet to hear a Protestant minister elaborate on the death rattle, however, and hospice can be miserably difficult to access, even when the dying seems commonsense, obvious.

I was with my mother on her penultimate hospitalization for complications of arthritis-staph infection-heart attack.  The doctor stonewalled when she demanded medicine to take the discomfort away.  She was already on more than a dozen medications, interacting who knows how.  The same when my brother panicked over her toe turning black.  Yet even her rheumatologist, a longtime friend, would not sign off on hospice care.

The staff at assisted living quit answering her call light.

An ambulance was called for her final medical event.  Ignoring the DNR, ER personnel treated her aggressively, seeking to avoid legal complication.  Writhing in pain, fading in and out of consciousness — her nails gleaming with polish (a service of assisted living) — my mother’s last night on earth was one of harsh lights, jarring noise and invasive medical procedures which hurt and humiliated her.

She slipped into a coma and died the next morning.

Sherwin B. Nuland’s eloquent How We Die: Life’s Final Chapter (1994) describes death from heart disease, cancer, accidents, etc.  The book won a National Book Award, yet otherwise savvy people in the medical field have not heard of it.  A surgeon and teacher of medical history, Nuland regretfully recalls trying to “save” his brother from an incurable cancer, in a vain attempt to be a hero, subjecting him to futile treatments, marring his last days with pain.

I know from “Engage with Grace” on e-patients.net and The Health Care Blog that the holidays are a good time to have The Talk about preferred ways of dying.  The Talk surely hastened my daughter’s return to college, yet now I know something new about her, and she about me.  And I know that some god-awful percentage of health care costs in America is expended during the last few weeks of life.

The medicalization of death has left Americans in denial, failing our loved ones as well as ourselves.

Think about that for a moment.

In what other job — any job in the world — would it be acceptable to even use the term “after working 16 hours.” The 16 hour workday went out with the Industrial era here in the U.S. (Residents can actually be required to be on-call for up to 30 hours at a time on a single shift, which is even more absurd.)

What other job in the world would we entrust the world’s most precious, irreplaceable resource — people — to professionals who are fatigued, worked-to-death, and under incredible stress with no hint of any kind of normal social or family life?

And yet, that is exactly how today’s medical educational model is setup. Doctors, in order to become doctors, must go through a residency period where they are literally worked until they can work no longer. Old adherents to this model suggest (with absolutely no research support) that it helps train doctors to work under pressure that the job requires. They also explain to us that it’s the only way we can afford to educate and train doctors (since anything else would require normal working hours and more doctors for coverage).

But few doctors go into an E.R. setting after residency, where such critical, immediate thinking skills would be most used and invaluable. And as for the economics of the model, well, that’s the same excuse industrialists used to explain why they needed to employ children to work in their factories in the late 1800s. And why few workers were paid a living wage (outside of the company housing).

We banned such barbaric practices back then recognizing that for a society to function and thrive, it must protect taking advantage of its citizens by companies or organizations who don’t care about the individual.

Ostensibly, guidelines are in place to try and reduce the continuing abuse of residents. They are supposed to now work no more than 80 hours per week, but this is easily skirted by averaging time worked over an entire month (so you can work 110 hours one week, and a joyous 50 another). That’s because there’s no incentive for teaching hospitals and medical schools to start acting humanely toward their residents. Apparently it’s still okay to abuse people’s rights, as long as those people are doctors in training.

I find this medical training model appalling and inhumane, and always have. Contrast it with the model under which I was trained. In psychology, future psychologists spend a year on internship, which have normal working hours (40 per week). We learn just fine. We treat people who have no money in community mental health centers. And we do significant outreach with whatever local resources are available. We have a normal family life, with many of my colleagues starting their family on internship or fellowship (an optional training year or two after internship). We hone our clinical skills while on internship, and we do so in an environment that is actually conducive to learning.

Each year, somewhere between 50,000 and 90,000 people die to preventable medical errors in hospitals. How many of those are at the hands of tired, overworked residents who can’t see straight, much less think straight?

Residents need to take a stand for humane working conditions. Working 30 hours straight is unheard of for nearly every other profession in this country (with a few rare exceptions). It is unacceptable in a civilized society, and a flawed model from its original design. A doctor can be just as well-trained working normal hours (40 to 50 per week), and likely learn a lot more if they were under less stress and pressure from their work environment.

There were 350 males and 165 females in their sample and the median age was 35 (plus or minus 8 years). I’d hazard a guess that they are all college educated.  So one’s antennae might go up just on those grounds since that’s not even close to a representative sample of the current internet population.

But right away I was drawn in by their methods and their research questions. I think it’s a fantastic idea to harness the power of log files to investigate what people are actually doing online. That’s why I’m a big fan of Bill Tancer of Hitwise, who once told me that they have to remove all data related to porn from their data set in order to see anything else. “Adult” searches just swamp the rest of what’s happening online, apparently. That’s the beauty of log files over phone surveys: we can only get 15% of adults to tell our interviewers that they have visited adult websites.

But that’s also where my antennae went up again — the researchers use the word “may” a bit too often for me to feel comfortable with all of their assertions related to their very cool data set. For example:

Identifying the recurrence of concerns about a rare disorder — especially when the recurrence occurs during another search task — may indicate that earlier escalations extend over time, and that anxieties or heightened awareness continue to interrupt users’ online activities over prolonged time periods. Such findings may be proxies for the rise and persistence of deep concerns that may disrupt other aspects of daily life.

Or they may not!

John Markoff’s November 24 article in the New York Times, however, helped me put my finger on why I thought I’d heard something like this before: “Medical Web Searches and Escalating Fears: Microsoft Finds Top Results Lead to Anxiety.” Markoff described Eric Horvitz as an artificial intelligence researcher (bing! a bell goes off in my head) and concludes with the following:

In the 1990s, Microsoft researchers built a health advisory system for pregnancy and child care. Mr. Horvitz said that in the future it would be possible to create search engines that were able to detect medical queries and offer advice that did not automatically make Web searchers fear the worst.

Bing! Bing! Bing! Now I know where I have heard something like that before: Diana Forsythe in her classic article, “Old Wine in New Bottles,” described how artificial intelligence researchers, when designing a migraine information kiosk (yes, it was the 80s), didn’t ask patients what they wanted to know. They asked one doctor what he thought patients should know about their condition.  And guess what? He didn’t include the answer to the number one question asked by migraine sufferers:  Am I going to die from this?

No, the migraine patients weren’t going to die from the pain, but isn’t it their right to ask the question? In asking it, does it mean they want to “escalate” their anxieties? Who should be the trusted guide? Is it Microsoft?

I hope the conversation about this study continues since I am intrigued by the questions it raises.  And here I’ll give the last word to John Naughton, a columnist for The Observer:

The moral? If you’re a hypochondriac, stay off the web. And remember that, as the man said, the best cure for your condition is to forget about your body and become interested in somebody else’s.

I think more than 15% of American adults would agree.

When Florence Nightingale arrived at a British hospital in Turkey during the Crimean War, she found a nightmare of misery and chaos. Men lay crowded next to each other in endless corridors. The air reeked from the cesspool that lay just beneath the hospital floor. There was little food and fewer basic supplies…

By the time Nightingale left Turkey after the war ended in July 1856, the hospitals were well-run and efficient, with mortality rates no greater than civilian hospitals in England, and Nightingale had earned a reputation as an icon of Victorian women. Her later and less well-known work, however, saved far more lives. She brought about fundamental change in the British military medical system, preventing any such future calamities. To do it, she pioneered a brand-new method for bringing about social change: applied statistics. … Full text here.

I can buy a damn good amputation for my diabetic, but what I can’t get is a good system in place to prevent my diabetic from needing the amputation. We don’t reward a system in which comprehensive coordinated care and robust prevention is valued.

Amen. What are we thinking, insurers, when we fund treatments instead of preventing them??

Case in point, from yesterday’s NY Times: The Evidence Gap: The Minimal Impact of a Big Hypertension Study

The surprising news made headlines in December 2002. Generic pills for high blood pressure, which had been in use since the 1950s and cost only pennies a day, worked better than newer drugs that were up to 20 times as expensive.

The findings, from one of the biggest clinical trials ever organized by the federal government, promised to save the nation billions of dollars in treating the tens of millions of Americans with hypertension.

Six years later, though, the use of [diuretics] is far smaller than some of the trial’s organizers had hoped.

What?? I use diuretics, prescribed by my e-patient doc, Danny Sands. Doesn’t every BP patient? They reduce water content in the body, lowering blood pressure. Why isn’t every BP patient doing this?

… pharmaceutical companies responded by heavily marketing their own expensive hypertension drugs and, in some cases, paying speakers to publicly interpret the Allhat results in ways that made their products look better.

“The pharmaceutical industry ganged up and attacked, discredited the findings,” Dr. Furberg said. He eventually resigned in frustration as chairman of the study’s steering committee, the expert group that continues to oversee analysis of data from the trial. One member of that committee received more than $200,000 from Pfizer, largely in speaking fees, the year after the Allhat results were released.

This is disgusting.

Obstruction of justice is a crime; why not obstruction of healthcare?