Note: This is two posts in one — scroll down to read Regina Holliday’s point of view.

From Susannah Fox:

For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into the spotlight and take a twirl. That’s how I see hashtags – spotlights on circles of people, talking about certain ideas. Create a hashtag and you call the tune. Add a hashtag to your tweet and you join the circle.

Over the last few days #whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.

It started when I tweeted a quote from Peter Margolis of the C3N Project:

“What if it was as easy to find out how to…find a medicine that’s right for you as it is to order exactly the book you want?” #c3n

His colleague Michael Seid tweeted back:

“new hashtag? #whatifhc what if everyone had the means & motivation to be part of the solution?”

I tweeted a few examples and the dancers began to whirl:

@produceconsume: #Whatifhc was focused on health, not just on care?

@GoalsGamified: What if more Americans accepted that shopping at farmers market costs less than food courts in the long term. #preventionisthrift #whatifhc

@cloudspark: what if we rewarded docs for choosing primary/family/internal medicine instead of specialties? #whatifhc

@klimaz: #whatifhc people actually took the advice of public health: stop smoking, get outside, eat fresh food, reconnect with friends…

@swertheimer: What if hospital bills showed actual costs? #whatifhc

@meganhatch: What if looking at my medical information and records were as easy as checking my email? #whatifhc

But a couple of people looked at #whatifhc and saw #wtfhc (“What the f… health care?”) in the jumble of letters. They heard a darker drumbeat, from a nightmare, not a dream.

@ReginaHolliday: What if your husband was dying and they would not let you see a medical record w/out paying 73 cents per page? #wtfhc

And the dance continued, spinning out in two directions now.

From Regina Holliday:

Looking back on the memory of

The dance we shared beneath the stars above

For a moment all the world was right

How could I have known you’d ever say goodbye

And now I’m glad I didn’t know

The way it all would end the way it all would go

Our lives are better left to chance I could have missed the pain

But I’d of had to miss the dance.

-Garth Brooks, The Dance

Susannah is right. Twitter is a dance. We often stay wallflowers surrounding the space until a new song is played. A hashtag catches our eye allowing us the chance to meet new partners or reunite with old ones. When I saw #Whatifhc, my dyslexic mind and injured soul saw #Wtfhc. I blushed to use this tag, as I am not one to curse. It made me uncomfortable.  What would people think?

I suppose a lot of things in health care are uncomfortable.

It is uncomfortable to lie on bedsores, whist in constant pain.  It is uncomfortable to have a catheter placed.  It is uncomfortable to be woken in the middle of the night because staff members think that is the best time to check your vitals.

It is uncomfortable to gasp for breath while fluid to fills your lungs as you lay dying.

I might have lost a few followers when I tweeted with this tag.  I seemed the angry patient.  I made them uncomfortable.

I paint about this discomfort frequently.  When you look upon The Walking Gallery you will see a great deal of #Whatifhc jackets.  Susannah’s jacket is mostly a #Whatifhc interpretation.  They are beautiful and hopeful, but you will see #Wtfhc jackets too.

Perhaps when I post a jacket, I shall use these tags.  Labeling each jacket with darkness and light.

What if a day came when I only had to use just one tag? #whatifhc

* * *

What’s your health care dream? What’s your nightmare? Please add it in the comments below or join the dance on Twitter.

Remember, “patient” is not a third person word. Your time will come.

A conversation on the SPM listserve was started by Joleen Chambers, @JjrkCh, a patient advocate for patients with failed medical devices. Here’s her Failed Implant Device Blog. She made a plea to have our members support a petition on the ConsumersUnion site that would enable medical devices to be more heavily scrutinized by the FDA, and outlined the needs for a better tracking system of medical devices than which currently exists. This includes the ability to contact patients in the event of a device’s recall.

These are all critically important things to have in place. I have a vested interest because I happen to have a failed medical device.

The conversation broke out when Joleen’s reference’s were put to the test….in her email she mentioned “millions of medical devices” and at the recall rate of 700 per year. A list member shared a link from the FDA listing medical device recalls, whose numbers differed from Joleen’s, and there was much discussion of her assertion. I made the point that we, as patient advocates, need to be clear on our data to support our argument. Dubious data, with the correct intention or not, undermines our credibility as patient advocates. Others chimed in, producing a really engaging dialogue.

In a parallel universe, Hugo Campos, @HugoOC, a patient advocate, poses the question: Who owns the data from his implanted heart defibrillator, (an ICD)? because he has been struggling to get access to the raw data from his heart monitor, that collects a large number of data points around the heart and the clinical status of his body. Hear the podcast here, from on NPRs media.org, and his TEDx presentation. The manufacturers argue that he would not be able to understand the data. Hugo is a selfquantifier at heart (no pun intended). Through his own self monitoring activities, he learned that coffee and scotch whiskey were triggers for cardiac arrhythmias.

Joleen’s argument that we need to support an independent registry and better monitoring of medical devices is important for patients, as is my argument, that we should have the right to know what is implanted in us. (I have requested from my doctor the information on my hip implant parts without luck, so far. I have my operation report and associated medical records, and nowhere is there information on what parts were installed. Someone has to have this information somewhere…no?) This aligns with Hugo’s assertion that he (or any patient) should have access to the data that his implanted medical device is collecting and transmitting about him to some place somewhere. All these should be our patient rights.

The real underbelly of this issue, for me, is who has responsibility for when something goes wrong?

When there is an implant that has been recalled, what happens to us, patients? Who pays to fix it?

What if it is a critical function device, like a heart defibrillator? Who’s liable is hard to determine unless really obvious (as is in my case). What happens, as in my case, when 90% of my femoral bone has grown into a hip implant except the tip, (mind you it is quite an uncomfortable pain…like my leg is snapped at that point) and doctors are throwing around words like, “We will throw in someone else’s femur and wire bind it to yours”, or “We could try a controlled fracture of the femur and dig out the titanium stem and hope for the best.”

That is when I think “#WTF, what a mess!” I am the one living in pain, and no good solution, and I will be paying for the surgery, not the doctor (at least that is not how the system currently works as far as I know), and what is really irritating for me is that the reason why I am having an early hip replacement in the first place is because of a medication that I was given for a misdiagnosis. How’s that for a double whammy. (That’s a whole other story.)

The question remains: how is the medical machine positioned to manage these types of complications? What I do know is that recently in 2009, for orthopedic devices at least, the AAOS (the American Academy of Orthopedic Surgeons) has sponsored a implant registry to track devices. I have no idea how to access it, and I would really like to know if my problem is being tracked. I cannot even get the info from my doctor, which I am working on. Although, the AAOS does not list patients directly as a stakeholder, it does list patient advocates, and it does indicate that the registry should be transparent. I would really like to get some ortho’s response about the registry. With this post I will put out a tweet to my Ortho twitter list including: Howard Luks @HjLuks, Katherine Burns @KburnsMD, and Steve Mora, @myorthodoc among others.

I also think we as advocates need to reach out and partner, in the hopes of transparency, with groups like the AAOS to have at least ortho implants information available to the patient. Patients should be able to add their own experience of their device.

I think there is a fine line between what a doctor considers a failure and what a patient does. I think I would technically not be considered a failure, although I cannot walk very far without pain. I also think we need to support more stringent rules on how devices get to market and are monitored. As such I support Joleen’s legislative efforts and will add my name to her petition for better management of these devices.

Also, I think patients have an inalienable right to their own data. Ultimately, this is all about the same thing, which is being educated empowered engaged patients partnering to make healthcare better for each/all of us and more transparent.

Nobody likes to think about it, but the vast majority of hospitals haven’t fixed this: a year ago the HHS Inspector General reported that 15,000 Medicare patients a month die from accidental causes. (See Jon Lebkowsky’s post about it, from a Consumers Union Safe Patient Project meeting where he spoke.)

We’re in our 13th year after To Err, yet this morning SPM member Paul Bearman spotted this article by Maura Lerner in the Minneapolis Star Tribune and posted a note on our member listserv. From Paul’s note:

… minor changes resulted in major improvement of a critical element in patient care.

What I love about the story is how intelligent change can be so wonderfully effective.   A small tweak reversed critical failures in discharge prescribing.   No  complex, expensive,  and difficult to use technologies were used.  Instead there was a basic trust people given the right structure to do the right thing will get it right.

The change agent in this case was Bruce Thompson, the hospital’s pharmacy director. From the article:

He and his colleagues decided to do a spot-check of 37 patients who were discharged from the hospital to nursing homes over three months in 2008 and 2009.

The rate of medication errors: 92 percent. “It was alarming,” he said. Only three of the 37 cases were problem-free.

The most common problems: Hospital physicians had prescribed the wrong doses, duplicate medications or omitted medications. Nearly a third were considered “likely harmful.”

Yikes!  92% wrong??  A third of them (30% of all scripts) likely harmful??

What’s the miracle fix?

…the hospital assigned pharmacists to check the discharge orders before patients are released. Now, if they spot a mistake, they contact the physician and straighten it out.

In nine months, the error rate dropped to “essentially zero percent”… that, in turn, cut the 30-day readmission rate… in half

And, deliciously, this:

The project worked so well, Thompson said, that some doctors now call the pharmacist before they write the discharge orders.

I don’t know if they realized it, but that’s the Lean principle of “quality at the source” – getting it right the first time, instead of checking for errors later.

Nearly zero percent!  Nearly total reduction in “likely harmful” prescription errors!

What’s an e-patient to do?

• Check, check, and re-check that everything’s going on – especially pharmacy orders.
• Share the Star Tribune article with your hospital (and nursing home’s) pharmacy staff.
• I personally know of two cases in my own family, in the past year, where medications were overlooked or wrong at discharge.
• In my experience most people are happy to do a simple change that improves things. (And if they aren’t interested, that ought to tell you something about that place.)

Kudos to Bruce Thompson and team at Hennepin County Medical Center – and to all the people there who gladly adopted the change. I bet there’s been at least one funeral prevented already.

• Fools! Damn fools! And Medical Science (Right, Santa??)
• Atlantic: Lies, Damned Lies, and Medical Science
• “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation
• Lies, Damn Lies And Statistics: Collective Statistical Illiteracy

These and other “damning” articles deal with statistics, so no wonder our normally polite bloggers would resort to swearing. How our health care data is used and by whom is incredibly important to e-patients, and the fact that much of this is out of our hands rouses a lot of emotion.

This post by guest blogger Fred Trotter originated in an SPM members’ listserv thread that debated which is scarier: the theft or loss of data or the intentional use of health care data by third parties?

There is a lot of danger in “legal but unethical” secondary data use. It is a far greater threat than hackers who steal health care data, IMHO.

I do want to point out, however, that there may be some benefits to a well-managed and ethical “health credit score” concept.

Consider how fundamentally unfair and inaccurate the current credit score system is (the normal one). But that system has created a backbone where normal people in the United States have real-time access to credit decisions. In practical life, this means that if you have decent credit but no money, and you need a sofa, you can get a sofa now. You can use that data liquidity to buy a boat or you can use it to buy a laptop for your new business.

In other countries, personal credit is unworkable because they do not have an effective system for ensuring that people will pay back debt (i.e., not paying it back will hurt their credit scores and limit future purchasing options).

From a health care perspective, that is where we are in the US; we are paralyzed. Without a health credit score, people who are disciplined about their health (i.e., e-patients) end up paying for people who are less disciplined. This creates a crazy incentive where healthy people have strong financial motivation to not get health insurance at all. Which of course makes it more expensive for everyone.

The individual mandate is an alternative approach to a “health credit score,” but it may not survive politically. If it does not, a health credit score might be an important enabler for ensuring that healthy people participate in insurance pools, which is a critical issue.

The real problem here is that the distance between an unethical system which penalizes the sick for just being sick (which is what we have now in any case) and an innovative system where being an e-patient pays off is just a hair’s breadth … and may in fact require the use of precisely the same data.

I do not want to pretend that I have a deep understanding of these issues. I certainly do not. But as a community, e-patients really need to begin grappling with these delicate data-use-balance issues.

The e-patient community is really one of the few that has a tractable notion of what a “high performing patient” might look like. But insurance companies, economists, policy makers, doctors, congresspeople, and lobbyists are all using other models to make assumptions about what patients might be capable of. I am convinced that many of these assumptions are untenable even for high-functioning patients, much less patients of average education and motivation.

Given the scientific approach that I and other “N=1/Quantified Self” e-patients have taken in trying to improve our personal health or wellbeing, I submit that if none of us can vouch for an assumption being made about patients, it is probably a bad assumption. How do we communicate this sort of correction to policy makers? How do we continue to discharge the “patient scientist” portion of the e-patient philosophy in a way that helps policy makers make good decisions? How do we ensure that patient data is used fairly?

Hell if I know.

My library is rethinking its provision of services to the public.  We’ve got a history of going beyond what the average academic health sciences library provides in this area but in this age of budget cuts (and in consideration of other factors) we’re taking another look to see if there is something we should be doing that would be more meaningful and helpful to the NC citizens.  I’m most interested in the explosion of peer-to-peer health care and mobile information and think we might be able to make an impact in these areas. Do you have any thoughts about possible roles that academic health sciences libraries could play?

My response:

I sure do, but they are only ideas, inspired by what I’m observing, so take them as such.

I’m writing a synthesis of the Pew Internet Project’s first decade of health research, hoping to summarize “how we got here” and look ahead before we dive straight into the next decade.

Here is a sort of ghost story about an academic medical library, excerpted from Tom Ferguson’s “e-Patients White Paper” (PDF – in English or Spanish):

One morning in 1994, the year Netscape released the first commercial Web browser, the Englewood Hospital library in Englewood, New Jersey, received a most unusual call. The caller identified himself as Dr. Harold Blakely, a local family practitioner. He gave the librarian a bibliographic citation for an article in a medical journal and asked her to make him a copy and to leave it on the table outside the library door, where he could pick it up on his evening rounds. This request was not unusual. The hospital librarians frequently left copies of journal articles that local doctors could pick up after the library had closed.

Later that afternoon, the caller phoned again, checking to be sure that his article was ready. But the library’s director, Kathy Lindner, took the call this time. Ms. Lindner knew Dr. Blakely. But she did not recognize the caller’s voice. After a brief discussion with a colleague, she phoned Dr. Blakely’s office. After several minutes a bewildered Dr. Blakely came to the phone. He assured Ms. Lindner that neither he nor anyone in his office had called the hospital library that day.

Half an hour after the library closed that evening, a nervous, well-dressed man with carefully barbered grey hair entered the hospital through a side entrance. Walking with a cane, he passed the elevator, climbed the stairs with some difficulty, and continued down the second floor hallway toward the medical library. As he picked up the envelope with Dr. Blakely’s name on it, a hospital security guard stepped out of the doorway where he had been waiting and asked him to identify himself.

Under the questioning of the hospital’s security service, he admitted that he was Edwin Murphy, a 58-year-old insurance agent with a chronic hip problem. Dr. Blakely, his physician, had been urging him to undergo a promising new surgical procedure. Mr. Murphy was intrigued but not convinced. He wanted to know more about the potential risks and benefits of the proposed procedure and had repeatedly asked Dr. Blakely to help him obtain a copy of the definitive review article, which had recently appeared in a major medical journal. In spite of his repeated requests, Dr. Blakely had not done so. Finally, in desperation, Mr. Murphy had decided that there was only one way to obtain this vital medical information he needed: He would have to impersonate his own physician.

Eccentric behavior, one might say, at least in those days of journals sitting locked up in medical libraries and clinicians who were not ready for a patient’s request for more information. Nowadays, such articles are published online – either in open-access journals or those requiring a fee – and anyone with internet access can conduct their own information search. Clinicians have come to expect that a percentage of their patients will educate themselves about their condition, participating as full partners in a conversation about treatment decisions.

So how did we get here?

In 1995, one year after Mr. Murphy impersonated his doctor, only about 1 in 10 American adults had access to the internet. By the year 2000, about half of American adults had access to the internet. Now, about 75% of adults and 95% teenagers in the U.S. have internet access.

In the year 2000 only 5% of households had broadband access. Now, two-thirds of Americans have broadband at home, which means that many more people have more engaging, “always on” access. One early Pew Internet study looking at how broadband changes us as internet users found that dial-up users took part in an average of 3 online activities per day. Broadband users took part in 7.

Eight in ten American adults have a cell phone. Six in 10 American adults go online wirelessly with a laptop or mobile device.

With each hurdle passed, from basic internet access to broadband to mobile, Pew Internet research shows that each one has a multiplying effect on people’s behavior. Mobile devices like smartphones are changing us, once again, as internet users, making us more likely to share, more likely to access information on the go, and, placing most American adults on the other side of a massive shift in communications.

In the last 15 years we have seen the internet go from a slow, stationary, information vending machine to a fast, mobile, communications appliance that fits in your pocket.

On the health front, eight in ten internet users look online for health information, making it the third most popular online pursuit among all those tracked by the Pew Internet Project, following email and using a search engine. This has been a remarkably stable trend, hovering at about 80% since we began measuring health information seeking in 2002, even as number of adults who go online increased and the internet-user population broadened to include a more diverse cross-section of the U.S. population.

These days, someone like Mr. Murphy can begin to research options before he even leaves his doctor’s waiting room. He might scan abstracts on PubMed and pick out a few to read at his leisure. In some practices, he might be handed a list of fellow patients’ email addresses – people who have faced the same diagnosis or treatment. He might navigate to an online patient network for people with the same condition, where he can ask questions and get support. He might post an update to Facebook or another social network site to let his friends and family know what’s going on.

Or, if he so chooses, he can keep his smartphone in his pocket and wait to talk in person with a loved one, the old-fashioned way. He may rely on a trusted relative or friend to do the research. Indeed, half of health searches are conducted on behalf of someone else – a new level of caregiving.

Then again, if someone like Mr. Murphy doesn’t have internet access of any kind, nor a care network to support him, he may be perpetually stuck in 1994, wishing he could participate fully in a major medical decision but not having the resources to do so. Who doesn’t have information access is as important a question for the future of healthcare as who does.

Now, what you’re asking about is going to be the second part of my project — what’s ahead? One possibility is for clinicians to acknowledge the power of peer-to-peer healthcare and encourage people to find other people like them (online, probably, but offline is possible too). I’ve seen a few examples of this and I wrote about them here:

Mind the Gap: Peer-to-Peer Healthcare: Beacons of Change

But back to Mr. Murphy, who really just wanted that one article. He may have benefited from peer-to-peer healthcare in that his network could have provided a clandestine copy of the article, plus other people’s personal reviews of the procedure, recovery time, etc. But what about just making sure that everyone who wants to read journal articles, can read them? What can you do to open access where it is currently closed?

On a personal note, here’s an article I’d love to read and discuss with my friends, but I’m not an NEJM subscriber, so not only can I not read it, but I can’t share it:

Making Sense of the New Cervical-Cancer Screening Guidelines

What if I, an educated consumer who knows that she should get a Pap smear but isn’t quite sure how often, could read the latest medical journal article available? What if I, an avid user of social network sites and pretty social person in real life, could spread that knowledge to my female friends, relatives, and colleagues?

Yes, I can rely on mainstream news coverage of the NEJM article. But what if I’m on an information diet and I want to go straight to the source, not the filtered version? For me, in this case, it’s still 1994.

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an RN, concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care. Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood. If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency. Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host? How long is the wait? It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

Participatory medicine requires an empowered partnership, in which patients express their wants and pursue their goals in partnership with providers who hear them and work together.

And that’s not just about the biology. In this powerful narrative, a hospital executive becomes a patient, sees what it’s like to be stripped of everything and not heard, and returns to speak directly to his C-suite peers. His experience will help caring professionals everywhere develop empathy – a good thing for any partnership.

This originally appeared on NickDawson.net as a post from Nick’s “father, hero and best friend, George Dawson.”

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

American author and activist Susan Sontag, Illness As Metaphor (1978)

My citizenship in that other place began on August 4, 2011. It came without much time to get ready. The week started with a routine visit to my primary care physician and ended with a diagnosis of cholangiocarcinoma (cancer of the common bile duct) at Johns Hopkins.

For the past 30 years I have been a hospital CEO. Cancer caught up with me two months before my scheduled retirement as President and CEO of Centra, a 6000 employee health system serving central and Southside Virginia. Aside from several outpatient procedures, I had never experienced a significant illness or injury. In some ways my professional career prepared me to be a patient. I am still learning about the gaps in that readiness.

Throughout my career I have been very interested in what we have come to call “the patient experience.” Centra, like many health care systems, has focused intently on patient satisfaction and the various related topics and measures of how our patients feel about their care. We have been students of Quint Studer and his ideas about how to better serve. We have listened to Fred Lee tell us how Disney would do it. And we have benchmarked our performance against other healthcare systems using metrics from Press Ganey and the CMS HCAHPS reports.

As a patient, I am learning new perspectives. One of these has to do with the loss of personal identify I felt as I entered Sontag’s Kingdom of the Sick. In the Land of the Well, people know who I am. Certainly this fact relates, in part, to my role as the chief executive of a large organization in our community. But it’s more than that. People also know me as a husband, a father, a skier and a guy who grows heirloom tomatoes. My friendships and associations go back 30 years. Just as each of us has a distinct fingerprint, every one of us has an identity that is unique and personalized.

When I became a patient, I felt this identity slipping away. Immediately the focus was on my illness and treatment. There seemed to be little time to understand or consider the person who was hosting this particular cancer. I found myself trying to engage my nurses and doctors in conversation to establish some identity as an individual.

In one sense, my feeling of personal anonymity is the product of a good thing. I chose my doctor and Hopkins as the place for my surgery because of their expertise and the large number of surgeries they perform on cases like mine. Some 300 patients a year receive Whipple procedures at Hopkins. It is a long and complex procedure and involves significant post-op care. I was an inpatient for nearly two weeks. At Hopkins the clinical pathway for this procedure is well established. Everybody on the treatment team knows each step of the process and his or her role. This is one reason why Hopkins has excellent outcomes for Whipple surgery patients.

At Centra we don’t perform Whipple procedures, but we do plenty of high volume procedures with excellent outcomes. Examples include cardiac catheterizations, total joint replacements and breast surgeries. Each treatment has a well established clinical pathway and a clearly defined process. But my time as a patient makes me wonder how well we understand and accommodate the uniqueness of each of our patients. How often do our patients feel the same loss of individual identity that I have felt?

Some specific ideas:

• It is about taking time to ask and listen to patients. In our daily rush to complete the social history screen in the Electronic Medical Record, do we really ask our patients who they are, and listen to their response?
• It is about the symbols and customs we adopt. I have developed a adverse reaction to hospital gowns – the kind that are split up the back. For me the gown has become the symbol that I am in the Kingdom of the Sick. When I put one on, it’s a little like surrendering my passport. I wonder what other unnecessary symbols and props we have adopted in healthcare. And I wonder how often they serve to protect our status and control rather than serve our patients interests.
• It is about the fragmentation in healthcare. Specialized intensive care units, hospitalists and multiple consultants have lead to greater clinical quality and efficiency. At the same time they are barriers to really knowing our patients.
• It is about information. The better we understand the clinical pathway, the greater our opportunity and responsibility to explain it to our patients. If we listen as we do so, we have the opportunity to understand what alterations or modifications are needed to meet each patient’s unique needs. In doing so, we have a chance to increase patient ownership and responsibility for recovery. If we leave the patient out of the information loop the best we can hope for is a passive partner in the process.

I understand the difficulties those of us in healthcare face. Short length of stays, pressures on productivity, the complexities of our professions are real challenges. My lifelong experience in healthcare management tells me pressures like these make it hard.

So I will leave you with just one question: How well do you really know your patients?

Now cheer yourself up with the latest article from the Journal of Participatory Medicine: “The Cancer Supportive Care Model: A Patient-Partnered Paradigm Shift in Health Care Delivery,” by Elias Anaissie and Tara Mink.

I have a special fondness for Table 2, which lays out elements of “patient dignity,” “patient empowerment,” and “patient safety.” (You know you’re a health geek when you start to see poetry in black-and-white gridlines.)

The patient stories section is also a gem. For example:

An empowered patient saves the day.
On December 27, 2010, a 25-year old male patient with Castleman’s disease was preparing to leave his hotel to take a flight home to North Carolina when he accessed the UAMS Patient Lab Portal system and identified significant abnormalities in his laboratory results. These results were still pending during his initial consult with the MIRT oncologist, preceding the decision to initiate therapy under the care of his local physician in North Carolina. Concerned, the patient canceled his flight and returned to MIRT for followup. Upon evaluation, it was determined that these abnormal results indicated a need for immediate initiation of a highly complex treatment regimen, and the patient had an excellent outcome.

And to round out This Week in Participatory Medicine, please read my other favorite article, which was highlighted on Twitter by Gilles Frydman:

A combination of giving patients more information about their conditions and better managing their medications can slow the revolving door of Medicare patients in and out of hospitals by about 20%, a study released Monday by Harvard University shows.

- “Better-informed patients can help cut costs, study shows” (USA Today, June 13, 2011). Press release (PDF).

What was the highlight of the week for you? You know, besides all the great stuff that’s been posted here on e-patients.net.

A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:

I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.

JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)

You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task!

I – and many other patients – know exactly what Dr. Brook means when he says:

…both of these approaches [physicians who acted "half full" and "half empty"] deprived me of being truthfully and fully informed about my prognosis, which is essential for making logical choices concerning treatment. I preferred those who told me the truth about risks and my prognosis, even if it was not rosy. I always voiced my preference to the physicians so that they would be aware of my wishes and so we could, hopefully, develop a trusting relationship.

When his radiation oncologists failed for five days to get the machine fixed or send him somewhere else, he asserted himself and did get sent elsewhere. He writes, “This lack of initiative left me feeling that they were indifferent to my plight.” That too will sound familiar to some.

Then, when he reported side effects and needed to be cared for:

“I needed the doctors to be there for me but, instead, they left me feeling like I was pestering them with trivial issues and complaints. Everything was so new to me. I was concerned and worried about my symptoms and looked to them for advice on how to cope. I also needed reassurance that these were expected symptoms and that they would go away afterwards. Fortunately, I found receptive ears and helpful advice from the clinic nurse.”

In my speeches I often start by saying, “Patient is not a third person word. Your time will come.” What a great example this narrative is.

There’s much more in the full article. Please, patients and providers alike, read the whole thing and think about when your time will come.

The most interesting statement I found in this brief news article was, “The e-mail did not indicate why the company decided to terminate its PHR service. The company advised users to download their PHR as a .pdf file and save the document for their records.”

Ah, a PDF. Yes, that’ll make it extremely easy to get that data into some other PHR (sarcasm alert).

And that led me to understand the underlying problem with all PHRs today, and the problem PHRs have always had — nobody trusts the companies who offer them, and few people understand what they are or why they should care.

I kind of chuckle when I hear a company describe that a part of its business strategy is the personal health record. I first heard of a PHR back in 1999, when I worked for drkoop.com, at that time competing for the #1 spot as the leading consumer health website with WebMD (drkoop.com lost). Drkoop.com’s management had this brilliant idea that everybody would want — and pay for — a personal health record online. In fact, this was the founding principle of the company that eventually became drkoop.com (as seen in one of their SEC 10k filings from that time):

Our company was founded in July 1997 as Personal Medical Records, Inc. During 1997 our primary operating activities related to the development of software for Dr. Koop’s Personal Medical Record System.

To say that the idea of a personal health record (or personal medical record, as they called it) has been kicking around the Internet for a long time would be an understatement. (Drkoop.com dropped the idea altogether after a falling out with their PHR development partner, HealthMagic.)

But nobody pays much attention to history on the Internet. One of the most frustrating components of consulting for companies today is their inability and unwillingness to listen and to learn from the companies who’ve come before.

Had the folks who were running Revolution Health at the time really dug into the market for personal health records, they would’ve seen exactly what we’ve seen now for well over a decade — nobody’s clamoring for them. Nobody is going to their doctor and saying,

“Gee doc, if only I had some way where I could manually enter in all of this data and try and keep it updated on a regular basis, and ensure that the company I choose to enter all this data in with is (a) going to be around 5 years from now and (b) is going to allow me to export it in a way that is actually helpful, I would be so much happier and healthier!”

Of course, let’s assume that I’m wrong. Let’s assume the 2011 IDC Health Insights’ survey of 1,200 consumers done earlier this year showing only 7 percent of respondents ever having used a PHR, and less than half still using one — which is virtually unchanged from when they conducted the same survey 5 years ago. Let’s say consumers are chomping at the bit for this kind of personal tracking ability.

What will they find?

Poor quality systems that haven’t undergone real-world testing with real-world data. As we discussed back in April 2009, PHRs simply don’t work as intended with real-world data. If one of the largest companies in the technology world with some of the brightest engineering talent on Earth can’t get this right — Google Health, in this case — what hope do we have?

Well, it seems, not a whole lot.

A March 30 article over at eWeek describes how Google is unlikely to move forward with Google Health. Instead, it’s likely to be relegated to the backburner, along with all of its other failed experiments. Of course, Google won’t comment on this, and they never will. Every company trumpets to every media outlet possible when they release a product, but mum’s the word when it comes time to acknowledge the product was unsuccessful and they’re shutting it down (or worse, putting it into a static state with little future development).

This is exactly the lack of transparency and openness consumers are fed up with, and one of the primary reasons patients are leery of trusting their personal health data with a single company. You don’t know whether it’s going to go under, sell your health data (even in aggregate form), or simply decide to quietly stop supporting its service in any meaningful way (without actually shutting it down). You may get your data out, but it may only be as a PDF. Today, there are still no widely-implemented standards for sharing health data records (although that is changing, slowly).

There are some notable exceptions, which I should call out here so that we can end on a positive note. PatientsLikeMe.com — which just opened up to everyone for any health condition — is quite transparent about what they do with your data. They aggregate it, they sell it, that’s how they make their money. And apparently it’s working, since they’ve been around now for many years.

Electronic medical records, like Microsoft’s HealthVault, are also a different animal, because they have tended to focus on addressing more of the needs of the provider, health care systems and hospitals, rather than just consumers. Paying attention to both sides of the equation — how data enters the system and how data gets out — is so important, yet something a lot of products in this space underestimate or pay nothing but lip service to.

I think it’s time to finally put the idea of a global personal health record to bed, permanently. We already have lots of individual personal health records floating around out there, tied directly to our personal health interests. And while it would be nice and more convenient to have them all somehow communicate with one another, companies who own all these individual records seem reluctant to explore the possibilities of enabling such communication. There are a lot of reasons — some valid, some not — for this reluctance.

Perhaps this will change in a more open and transparent future. But I won’t be holding my breath.

Also check out Denise Amrich RN’s article on the Google Health rumor mill, Have rumors of Google Health’s death been greatly exaggerated?

This is a guest post by Jessica Mark, healthfinder.gov and Outreach Program Manager, Health Communication and eHealth Team in the Office of Disease Prevention and Health Promotion at the U.S. Department of Health and Human Services

We all struggle with complex health information. In fact, as many as 9 out of 10 adults experience limited health literacy skills at one time or another. How does this affect the way we find, understand, and use health information on the Web? This is a critical question for the e-patient era.  After all, it’s only a matter of time before we are all e-patients.

Designing for Health Literacy Online

Susannah Fox recently highlighted the health information divide in her February 1 post. As we work to expand access to the Internet for all Americans, we must work in parallel to improve the quality and usability of health information on the Web. For many information seekers, the Internet can be stressful and overwhelming—even inaccessible. Much of this stress can be reduced through the application of evidence-based best practices in user-centered design. As health communicators and public health professionals, we have much to learn from the field of usability. (For starters, how about the fundamental belief that the problem lies with the Web site—and not the person using the Web site?) As more health information and services move into the online environment, Web developers and health professionals must find new and better ways to engage with the public in more meaningful ways.

At the Office of Disease Prevention and Health Promotion (ODPHP), we have taken this to heart. For the development of healthfinder.gov, ODPHP conducted 15 studies over 4 years with more than 750 people age 18 to 84, many with limited literacy skills. Findings from these studies drastically changed the way we present health information on our Web sites. For example, we learned valuable information about simplifying navigation (”back” and “next” buttons work great), keeping content in the center of the screen (many users ignore text in the right-hand margin), and offering multiple search and browse functions.

More research is needed to better understand how people with limited literacy skills and limited health literacy skills use the Web.

A National Priority

On December 2, 2010, the U.S. Department of Health and Human Services (HHS) unveiled Healthy People 2020, thereby setting a 10-year agenda for improving the Nation’s health. The goals and objectives included in Healthy People 2020 will determine national public health priorities for the decade—influencing everything from public health research to resource allocation. For this reason, I am both excited and optimistic about the increased focus on improving health communication and health information technology (IT) in Healthy People 2020. The Health Communication and Health IT topic area outlines 13 objectives for the year 2020, focusing on improving health literacy, patient-provider communication, and accessibility of online health information.

• In the coming months, ODPHP will join with Health Literacy Missouri to host a series of Twitter chats about improving health literacy. During a recent Twitter chat, the discussion focused on what Healthy People 2020 means for health communications and health IT. A summary of the conversation is available from Health Literacy Missouri.

• We encourage you to explore the Healthy People 2020 Health Communication and Health IT topic area and to share your feedback with us through the Healthy People 2020 LinkedIn group.

Moving Forward

Over the course of the decade, the e-patient community will have opportunities to influence developments in health IT that will lead to more productive patient-provider interactions, enhanced access to evidence on the effectiveness of treatments and interventions, and personalized tools to promote health and prevent disease.

One area of opportunity is where health and digital literacy meet—much of this lies in yet unexplored territory.  We encourage exploration and research in order to:

• Fully define digital literacy and understand its influences on health literacy.
• Improve our current understanding of how people with limited health literacy use and apply the technologies of our digital age.
• Discover more ways to make information accessible—regardless of Internet experience, comfort with technology, and online search and navigation skills.

Ultimately, the evolution of information and technology should be driven by users. We need to be listening to them, working to better understand them, and co-designing the next generation web-based health guidance. My colleagues at ODPHP and I support this charge. With your help, we can build a truly patient- and public-centered health system.

Resources:

• Health Literacy in the Digital Age
• Health Literacy Online: A guide to writing and designing easy-to-use health Web sites
• Health Communication, Health Literacy, and e-Health

How can this be? Some cynics say hospitals and doctors are all driven by money, but if that were the case, we wouldn’t see some doctors prescribing things seven times less than others, would we?? But we do. (There’s nothing data to give a sense of what’s actually going on.)

Last night the CBS Evening News had a great short segment about the latest Dartmouth Atlas report (PDF, 11MB(!)). See how compellingly the data tell the story: (There’s a 30 second commercial at the start)

Appearing in the video are FIMDM president Mike Barry, and Kate Clay, Program Director of Dartmouth’s Center for Shared Decision Making.

I love concise visual depictions like this, but evening news sound bites are necessarily limited. There’s much more data in the nice interactive data graphics at DartmouthAtlas.org.

Chronic disease is exploding in the U.S. The number of primary care health professionals is declining. Behavior change is difficult. But what are we going to do about it? Here are three ideas I’ve brought back from my travels: robots, enchanted objects, and networks.

The most radical idea I’ve heard was proposed at one of the most staid events I’ve attended: the Connected Health Symposium. Roll the tape:

Joe Kvedar also blogged the speech: “Emotional Automation: Bonding with Technology to Improve Health.” Check out this idea:

Can we set up systems that are extensions of our providers that will allow patients to feel cared for by their doctor but be interacting with a piece of software or a robot?

Continuing this theme of interaction with inanimate objects, watch David Rose talk about GlowCaps and other enchanted objects at Mayo Transform 2010:

Or just read his fantastic summary in 131 characters:

Smartphone health apps won’t be used daily. Self-report fails. Texting programs annoy. Enchanted objects will have the most impact.

Now for the third idea: Hands-on care by health professionals can’t scale. One-on-one advice from professional intermediaries, like librarians, can’t scale.  Networked peer support, research, and advice can scale. In other words: Altruism scales.

My inspiration for this idea comes directly from the work of Nicholas Christakis and James Fowler, who observe that altruism spreads in networks, but I’m adding my deep knowledge of consumer behavior online, which most recently got pushed and prodded on a panel about patient communities.

So:

Can a mobile device be a comfort object, akin to Joe’s pet rocks and Tamagotchi? (See also: the teens example in The Power of Mobile.)

Is it possible to quantify the return on investment on love, whether it’s delivered in person, over the phone, through a screen, or… who knows what’s next?

Is it time to bond with technology to improve health?

• “To improve health and health care, we need to start asking…”
• “To improve health and health care faster, we must…”
• “My bold idea for transforming health and health care is…”

You can see the results of this thought experiment on Flickr, on Twitter (#ideapowered) or on YouTube. Here’s what I said:

The sound isn’t perfect, so here’s what I meant: Acknowledge the power of networked patients and caregivers.

Many people talk about how consumers are the greatest untapped information resource in medicine, but the Pew Internet Project’s research shows that patients and caregivers are already accessing that knowledge via social media (and less whiz-bang technologies). The health care system just needs to tap into the parallel system that has sprung up.

What do you think?  Which of the questions would you like to answer?  Please tell us in the comments.

Sadly, academia and broken peer review are also linked to our tenure system. We need to fix that.

I hate to condemn with a broad brush: many academics care deeply about better patient care and believe – genuinely – that tenure is a good thing. As Wikipedia describes it today, tenure “protects teachers and researchers when they dissent from prevailing opinion, openly disagree with authorities of any sort, or spend time on unfashionable topics.” But sadly, the vast majority of academics acknowledge that an even more powerful benefit of tenure is pretty damn good job security. Tenure has much more to do with money (lifetime job security) than academic freedom.*

Tenure and traditional peer review are joined in a pernicious union that should be smashed if universities are to be trusted to promote the public interest through good, published science and medicine. In the “publish or perish” environment of academic medicine, candidates for tenure are generally ranked not on how much information they create (by research or invention) or how well they teach (which counts for just about nothing), but by the prestige of the journal where they publish. It’s a system that might have made sense when a journal’s reputation was regarded as a proxy for an author’s scientific rigor and integrity. No more.

With the Internet, information is distributed efficiently and effortlessly. Reputations are created – and destroyed – quickly. Crowdsourcing experts review articles to improve their quality. Articles themselves aren’t published and forgotten, but continually curated over time. The old publishing and peer review model is obsolete in this environment.

In an excellent article this week in The New York Times, journalist Patricia Cohen describes a number of experiments to improve peer review:

• Katherine Rowe, a Renaissance specialist and media historian at Bryn Mawr College, worked with the prestigious 60-year-old Shakespeare Quarterly to crowdsource/review articles by a panel of invited experts. The reviewers “were invited to post their signed comments on the Web site MediaCommons, a scholarly digital network.” Others could add their thoughts as well, after registering with their own names. “In the end 41 people made more than 350 comments, many of which elicited responses from the authors. The revised essays were then reviewed by the quarterly’s editors, who made the final decision to include them in the printed journal, due out Sept. 17.”
• “Today a small vanguard of digitally adept scholars is rethinking how knowledge is understood and judged by inviting online readers to comment on books in progress, compiling journals from blog posts and sometimes successfully petitioning their universities to grant promotions and tenure on the basis of non-peer-reviewed projects.”
• “Clubby exclusiveness, sloppy editing and fraud have all marred peer review on occasion. Anonymity can help prevent personal bias, but it can also make reviewers less accountable; exclusiveness can help ensure quality control but can also narrow the range of feedback and participants. Open review more closely resembles Wikipedia behind the scenes, where anyone with an interest can post a comment. This open-door policy has made Wikipedia, on balance, a crucial reference resource.”

Journalist Cohen also nails the tragic and under-reported association between traditional peer review and tenure:

• “The most daunting obstacle to opening up the process is that peer-review publishing is the path to a job and tenure, and no would-be professor wants to be the academic canary in the coal mine. The first question that Alan Galey, a junior faculty member at the University of Toronto, asked when deciding to participate in The Shakespeare Quarterly’s experiment was whether his essay would ultimately count toward tenure. “I went straight to the dean with it,” Mr. Galey said. (It would.)

Well, good for the University of Toronto: Mr. Galey can get “tenure credit” and participate in an experiment to create high quality information. What a concept for a university!

Medicine isn’t a total laggard when innovating in this space. PLOS, several journals within the BioMedCentral group, and others, are experimenting with open, pre and post publication peer review. A growing group of medical publications – but still a tiny percentage – embrace open access, which makes articles freely available. U.S. federal law that mandates open access for research published with public grant money is speeding the trend exponentially.

Still, when you consider what’s at stake – healthcare, and at times a life-saving treatment – we should hang our heads in shame when one considers how slow medical publishers have been to improve peer review and access. And shouldn’t academia be leading the charge for better information rather than obstructing it through a system as self-serving and public-interest-damaging as tenure?

In more naïve times, most of us believed that the system of peer review used by trusted, traditional publications like The New England Journal of Medicine was our best bet for trusted sources of current medical information. Now we know better: numerous experts have provided extensive evidence that traditional peer review is unreliable. And using tenure to prop up the bad system is a black eye on our universities.

I have proposed³ that online Reputation Systems could be created to help assess the reliability of crowdsourced information, medical evidence, and pre and post-publication peer review. It’s just one idea, my horse in the race. Regardless of what we wind up with, here’s hoping that everyone who wants to improve health and patient care will innovate to fix our broken peer review system. And while we’re at it, let’s fix tenure, too!

^{* When you think about it, academic freedom and tenure shouldn’t even be linked: there are other ways (transparency, public exposure, good journalism by people who write about universities, even political pressure) that influence academic freedom more powerfully than tenure.  Return to reference}

Suggested Readings, Podcasts, and Websites

1. Cohen P. Scholars test web alternative to peer review. In The New York Times. Published: August 23, 2010. Retrieved 20:38, August 25, 2010
2. Smith RW. In search of an optimal peer review system. J Participat Med. 2009(Oct);1(1):e13. Retrieved 20:40, August 25, 2010
3. Frishauf P. Reputation systems: a new vision for publishing and peer review.  J Participat Med. 2009(Oct);1(1):e13a. . Retrieved 20:42, August 25, 2010&npsp; Return to reference
4. Frishauf, P, Smith, RW, Gruman, J, Green, L. Participatory evidence: opportunities and threats.  Podcast for J Participat Med. 2010(Aug); Retrieved 20:45, August 25, 2010
5. Frishauf, P, Smith, RW, Wager, L, Jadad, A, Adler, T. Peer review and reputation systems: a discussion. Podcast for J Participat Med. 2010(Aug); Retrieved 20:51, August 25, 2010
6. Rothwell, PM, Martyn, CN. Reproducibility of peer review in clinical neuroscience. Brain 123: 9, 2000 (Sept)
7. MIT Center for Collective Intelligence. http://cci.mit.edu/
8. Tenure. (2010, August 17). In Wikipedia, The Free Encyclopedia. Retrieved 19:28, August 25, 2010, from http://en.wikipedia.org/w/index.php?title=Tenure&oldid=379372335
9. Adler TB, Alfaro, L. A content-driven reputation system for the Wikipedia [PDF]. ACM 978-1-59593-654-7/07/0005. Accessed October 17, 2009. [Google Scholar]
 The group has released a WikiTrust extension for the Firefox web browser based on its research that is now available in beta and available at https://addons.mozilla.org/en-US/firefox/addon/11087 accessed October 2, 2009. A review of the extension may be found in Wired magazine at http://www.wired.com/wiredscience/2009/08/wikitrust/ accessed October 2, 2009.
10. Priedhorsky R, Chen J, Lam SK, et al. Creating, destroying, and restoring value in Wikipedia. ACM 978-1-59593-845-9/07/0011. [Reference to come.] Accessed August 12, 2009. [Google Scholar]
11. Frishauf, P. The end of peer review and traditional publishing as we know it.  Medscape J Med. 2008;10(11):267. Retrieved 21:35, August 25, 2010

Case in point:

Julie Thoren is an active practitioner of Participatory Medicine who’s seen first-hand the tremendous value informed e-patients share with each other. This morning she wrote to me about a post, How online patient communities make money from patient data, on the blog of KevinMD, a neighbor of mine in Nashua NH.

Kevin pointed out, correctly, that patients need to have their eyes open about what might be done with their data, etc. Commenter “Doc D” cited the chestnut “The plural of anecdote is not data,” and Julie responded about Participatory Medicine and the value she’s found in online communities.

Here’s my comment (with a few edits), reflecting on the realities I’ve personally seen and what others have written in JoPM (the Journal of Participatory Medicine):

_________________________

This is a complex and multidimensional subject. I couldn’t agree more with Kevin’s basic assertion that patients need to be on guard.

On the other hand, I know first-hand (and second-hand many times over) that Julie’s got her facts straight that many many many patients have suffered at length because they presumed the right/smart thing to do was whatever their physician told them, and who only learned of other options – sometimes life-altering – from an online patient community.

Patients and caregivers (and, I’d assert, physicians and insurers and policy people) simply need to wise up about the difficulty and skills and knowledge and risks that health and healthcare involve. In my view, only when someone realizes all of that, can they make truly informed decisions without blinders on or their head in the sand. JoPM editorial board member Trisha Torrey has written a well documented book about this: You Bet Your Life: Ten Mistakes Every Patient Makes / How to fix them to get the health care you deserve. Those are not imaginary stories – including her own, where the physicians, in whom she of course had faith, told her she had six months to live due to inoperable cancer, when in fact she didn’t have cancer at all, and she only found it out through her own research.

I couldn’t agree more with Doc D that the plural of anecdote is not data. Any patient community that doesn’t understand this is being unscientific. On the other hand, it’s equally unscientific to think that our established channels are reliable sources of information – especially to think they’re the only reliable source. I won’t take time here to go into that in depth, but I’ll quote this from the Journal of Participatory Medicine:

“…evidence on the upside of peer review is sparse, while evidence on the downside is abundant. We struggle to find convincing evidence of its benefit, but we know that it is slow, expensive, largely a lottery, poor at detecting error, ineffective at diagnosing fraud, biased, and prone to abuse … most of what appears in peer-reviewed journals is scientifically weak.”

Was that said by an angry disillusioned patient, mad at publications like the British Medical Journal? Why no, it was written by Richard Smith, after 25 years as editor of the British Medical Journal.

Then we have the recent news that the PatientsLikeMe community beat Lancet to the punch, by a long shot, regarding lithium, after a peer reviewed journal had published a ludicrously inept paper (contradicted by both PLM and Lancet).

No smart patient will unthinkingly trust a patient community (nor a physician), online or off. We all need to wise up and be smart consumers. And based on Smith’s writing, I assert that no smart physician or consumer will unthinkingly trust evidence from medical journals.
_______________

Thanks to Julie for bringing this stimulating topic to my attention. Kevin, I suspect I don’t see entirely eye-to-eye with  you on this, but as I said, I think we share a common sense that people need to wise up.

(Another “wise up” tool, btw, is Gary Schwitzer’s Health News Review site, supported by the Foundation for Informed Medical Decision Making.)

The health plan’s surgeons don’t have much experience or success with the repairs, so doing the right thing would require costly – but necessary – out-of-network surgery. The family fought for years, researching and documenting, and won.

Yesterday Diane sent this update:

Great news about Hilary’s heart! She had an echocardiogram and follow-up cardiology appointment a couple of weeks ago – a year and three-quarters post cardiac surgery. Her cardiologist said that Hilary’s heart valve and the heart itself are both now “normal” and that she can expect the repair to last a very long time.

It may, indeed, last until she’s a little old lady. At that point, she may then have a bit of leakage such as other little old ladies her age might experience.

No guarantees, of course, in any of this, but we both felt enormous relief to hear that she’s likely looking at a very normal life and life span.

Congratulations to both of you!

Trisha Torrey wrote about the Engelmans yesterday on the About.com Empowered Patient blog, proposing that the difficulties the Engelmans faced constitute a new kind of “medical error,” and ought to be classified as such. I can’t disagree: in most of my speeches I say it’s a fundamental human right to know what your options are and pursue them.

That proves patient empowerment is a real trend, driven by a powerful force: the desire to help oneself – or, often, one’s child – in any way possible, using every possible resource, which today includes the internet and social connections. (Yes, real medical value from connecting with non-MDs.)

In this case a large health plan was out-thought, outresearched and outmaneuvered by one of the most potent e-patient subtypes: the “Mama Lion.” The plan’s own cardiologists unanimously said Diane’s daughter Hilary needed mitral valve surgery, but the staff surgeons repeatedly said no – largely because, one suspects, they didn’t have adequate expertise for the appropriate surgery and didn’t want to pay to have it done out of network.

Instead they urged Hilary to hurry up and have babies while she could, wait excessively long for necessary surgery, and accept their claim that they were adequately qualified to do it when they clearly were not.

This is a long, true, inspiring story of an empowered patient/family using the internet to drastically alter the outcome for the better. She’s had this story written for a year and has been looking for a place to publish it. So glad you found us, Diane – and mazel tov, Hilary!

Through the Land of Oz:
Self-Advocacy in Today’s Health Care System

by Diane H. Engelman and JB Allyn

In January 2003, the cardiologist declared, “You should have your babies right away. Your heart valve will need replacement and it will be difficult, maybe impossible, to have kids after your operation. You have the choice of a pig valve or a mechanical valve.” My daughter, Hilary Engelman, was 23 years old, not married, and not yet thinking of having children. After the cardiologist’s pronouncement, we cried, not for the only time on this medical odyssey.

Hilary had been diagnosed at age seven with mitral valve prolapse (MVP). Since she had no symptoms, doctors relied on echocardiograms – sound waves that create a moving picture of the heart – to give an accurate, quick assessment of her overall heart function. Initially, they thought her condition was a benign heart murmur, the case for many people with prolapsed mitral valves. Three years after first diagnosis, though, a pediatric cardiologist at our health maintenance organization (HMO) said, “Your daughter’s MVP is not trivial and may require surgery someday.” With a hint of sadness in his voice, he pointed to a photograph of a vibrant-looking teenager on his bulletin board and added, “A patient of mine died from a leaky valve like hers.”

I had been a member of this HMO since before Hilary’s birth. Both my children were born there and we had received great care. I trusted them to follow her condition vigilantly, but this physician’s deadly comparison irritated me. It also got my attention and started us on our long journey toward understanding the exact nature of her heart valve problem and how to fix it. I did what any mother, any consumer can do – I stubbornly sought every piece of information available on MVP. For three days following that appointment I read and cried, cried and read, relieved to uncover facts but fearful for the future.

I found that the medical phrase “mitral valve prolapse” referred to a condition more than a diagnosis, describing a range of heart valve variation, from benign to malignant. The mitral valve controls blood flow between the upper and lower chambers in the left side of the heart. Blood should flow only one direction, from the upper chamber into the lower. If these valve flaps do not work properly, part of the valve may “balloon” into the upper chamber and regurgitate, or leak.

Over the years, doctors applied a dozen descriptors to Hilary’s malfunctioning heart valve, including deformed, flailing, floppy, and, her least favorite, ugly. For consumers like us, this list did not cast more light on her condition. We knew only that her valve was “prolapsed,” and a prolapsing valve does not necessarily mean anything medically important. Many people walk around with prolapsed mitral valves and never need treatment, much less open-heart surgery.

Cardiologists, who treat disorders of the heart that can be managed non-surgically, followed my daughter’s case over the years. With no symptoms and semiannual passable echocardiograms, we slipped into a shared, dangerous illusion of good health. But with the 2003 warning that Hilary should have her babies right away, surgery suddenly hung over us again. I arranged for several surgical opinions, and during this round of consultations, a cardiac surgeon first uttered the dreaded words, “Your daughter’s valve is probably not repairable.” But at the time, cardiologists and cardiovascular surgeons said she did not need an operation, at least not yet.

Then, in December 2007, two HMO cardiologists warned that surgery should happen within a month. Although we had long expected this day, its arrival overwhelmed us. Hilary said to one doctor, “You have no idea how hard it is agreeing to surgery when I have no symptoms. I feel fine!”

Compared with her echocardiogram from six months earlier, her valve now leaked severely, creating two jets – an ominous finding. Blood pressure increased in the arteries supplying her lungs, and her heart muscle showed signs of exhaustion. If leakage forces the heart to work too hard to pump blood, its function will eventually decline. Damage to a heart muscle is irreparable and permanent. Her primary cardiologist warned that shortness of breath, dizziness, and fainting on exertion were not far away and immediately referred her to our HMO’s cardiovascular surgery department to schedule a heart operation.

Her heart murmur had turned out to be more than a variant of normal. It was on the severe end of the MVP spectrum, and, uncorrected, a valve like hers may lead to a heart transplant or even death. Hard enough to think she would require open-heart surgery, but knowing she had the kind of valve that her doctors considered too difficult to repair left us numb.

Clinging to the life raft of current literature, most of it available on the Internet, I discovered critical information. Her defective valve might actually have a name: “Barlow’s valve,” a consequence of “Barlow’s disease,” first written of in the 1960s. None of the HMO physicians had mentioned this label, though it fit uncomfortably well with their many descriptions of her troubled valve. I was relieved to find a possible diagnosis, hoping that a specific label for her valve might also mean a specific treatment.

Second, I found that the likelihood of successful childbirth lowers after mitral valve replacement. When I initially understood that my daughter’s heart condition might require surgery, a friend, a cardiac-nurse specialist, had mentioned that mitral valve repair, not replacement, was the best surgical treatment. She said that too many patients with severely-leaking heart valves receive replacement valves instead of repairs. With mitral valve repair superior to replacement, the choice between the two matters to all patients and is a crucial detail for a woman, such as Hilary, who is yet to have her children.

Third, and perhaps most significantly, I discovered why physicians had not given Hilary’s prolapsed mitral valve a more specific label. The reason stemmed from uncertainty in classifying valve problems. Even among cardiologists and cardiac surgeons this confusion can keep doctors from understanding each other and patients from knowing how to choose a qualified surgeon. Hilary’s specific difficulty would identify the type and complexity of lesions that her surgeon would likely encounter in the operating room and the level of surgical skill needed. And, critically, choice of surgeon would largely determine whether her valve was repaired or replaced. But so far, cardiologists and cardiac surgeons had focused solely on the state of her valve, not identifying choice of surgeon as a key issue in whether her valve would be repaired.

I also found expert opinions supporting mitral valve repair over mitral valve replacement. Dr. Bernadine Healy is a cardiologist and former head of the National Institutes of Health and the American Red Cross. She discussed severely leaking mitral valves like Hilary’s in US News and World Report, October 8, 2007. Paraphrasing, this article said that patients with repaired valves live longer, with better heart function and less risk of complications; that in the right hands, more than 90 percent of leaky valves can be repaired, though those in the U.S. actually getting repairs is lower, closer to 50 percent; and that most cardiac surgeons do only a few mitral operations each year, primarily replacements, mainly because replacements are what they know how to do well. Dr. Healy also said that repair surgeries require extraordinary knowledge and judgment; that tougher cases of mitral valve disease require the skill found in high-volume heart centers; and that if done properly, the fixed mitral valve functions almost as well as a normal one.

In 2006, the American College of Cardiology/American Heart Association (ACC/AHA) had published their Guidelines for Management of Patients with Valvular Heart Disease; they recommended MV repair over replacement for the majority of patients requiring surgery for severe, chronic valve leakage. The same year, surgeons in England drew the same conclusions (Ray et al, 2006).

With this encouraging information in hand, we focused on finding a surgeon who was skilled at repairing a severely deformed valve like Hilary’s and who could also advise us about timing her surgery. According to the British surgeons, to improve a person’s health, valve repair must eliminate valve leakage before onset of symptoms leading to heart failure. If a patient waits too long, even “normal” echocardiograms can mask significant heart muscle dysfunction and onset of symptoms may go unnoticed. Once a heart begins to fail, even if a successful repair follows, the patient’s life span is likely shortened. And when an operation occurs either too late in the course of the disease or as an emergency, repair is less an option and replacement more likely. Timing my daughter’s surgery required walking a very fine line.

Following our meeting with the cardiologists who told Hilary she needed surgery right away, HMO staff had stressed that the cardiovascular surgery department was “remarkably sophisticated.” But our choice of surgeons narrowed dramatically when we learned that only a few of them actually operated on heart valves. We selected the only plan surgeon who, by reputation, was skilled in mitral valve repair, with more experience at valve surgery than the others. His staff told us that patients came from all over the country for him to operate. With three long weeks until our appointment with this surgeon, and anxiety a permanent companion, I moved things forward from another direction.

I sent copies of two of my daughter’s most recent echocardiograms to a cardiac surgeon in New York City. Dr. David Adams is affiliated with a specialty, high-volume heart center such as Dr. Healy mentioned in her article, the Mitral Valve Repair Reference Center at The Mount Sinai Hospital. I chose Dr. Adams because I appreciated the quality of his writings on mitral valve repair. I asked if Hilary had Barlow’s disease, whether he thought she needed surgery, and if so, when? Most important, I asked if he considered her valve repairable. He responded quickly: Yes, it was a Barlow’s valve, she needed surgery, and, yes, in his opinion her valve could be repaired. He also said: “This is an operation for 2008, not 2009.”

I felt agitated that surgery seemed truly upon us, but calmed to know my daughter’s valve might be repaired. I admit to feeling a bit hesitant about his response, however, since Dr. Adams’ assessment countered numerous other physicians who had told us that her valve would likely have to be replaced, not repaired.

When we entered the most-experienced HMO cardiac surgeon’s office in January 2008, I looked forward to his estimate of best timing for surgery and fervently hoped to hear him say that she had a repairable valve. We had been told by experts that Hilary’s was not garden-variety mitral valve prolapse, but would this surgeon confirm Barlow’s disease? I assumed he would not only be familiar with Hilary’s records but also sensitive to a young woman facing open-heart surgery.

Wrong on all counts. He appeared not to have reviewed my daughter’s medical records. He fumbled through chart notes and could not make his computer work to study her echocardiograms. We sat expectantly. He gave her records a cursory look, then said she did not need surgery and should schedule another echocardiogram in six months. We stared at him. His statement contrasted sharply with other experts, many within his own organization who said she needed surgery now. He then said she had no symptoms and grimly added that surgery had many dangers and she “might have a stroke or die” during or as a result of surgery.

He reviewed a series of catastrophic possible outcomes in extensive, insensitive detail – failed surgery, death, loss of biologic function from stroke, heart or kidney failure, additional surgeries with unexpected outcomes, and on and on. We had lived with the fear of those possibilities for many years, but he spoke as if he was giving us new information. No one in her right mind would voluntarily undergo mitral valve surgery after his litany. Yet, in the face of these possibilities, and all too soon, Hilary would have to muster the emotional courage to tackle what only she could face: open-heart surgery.

Why did he focus on the risks of surgery, not the benefits? Delaying surgery, too, carried potentially grave hazards, but he said nothing about them. All the HMO cardiologists seemed concerned about my daughter waiting too long, but this surgeon did not. Did these people ever talk to each other? I felt stranded in the Land of Oz, baffled by the smoke and mirrors of the Wizard, invited to trust the man “behind the curtain” and give up what I knew to be true. I felt his opinion begin to erode my own judgment, based on knowledge from several sources, but forced myself to speak. I asked about “Barlow’s valve.” At first, he did not acknowledge the question, but a few minutes later, said off-handedly: “It might be a Barlow’s valve.”

Determined, I forged ahead with other questions prepared in advance – the what, when, why, and how. Surgery – when and why and how long does it take? Valve repair – what chance in Hilary’s case? Repair versus replacement – how many of each did he do in a year; what was his repair rate for Barlow’s valve? All important information to ask of any valve surgeon and essential to understanding what lay ahead. Certain responses would most likely lead to a timely and successful valve repair, others to delay and a replaced valve.

The surgeon’s answers all pointed toward delay. “If and when” Hilary needed surgery, he said, he was qualified to do it and valve replacement was a possibility – her valve defect was “complex and maybe too difficult to repair.” He spent time discussing the “several choices” we had for replacement valves. He then said she had only a 60% chance of successful repair, at best, and that he operated on two to three Barlow’s valves per year.

We knew that expert mitral valve repair surgeons at specialty centers repaired valves like Hilary’s two or three times a week, not two or three times a year. And their success rates were close to 100%, far above his predicted 60%. In addition, the surgeon’s focus on her lack of symptoms was a serious distortion, since lack of symptoms does not necessarily mean that a person’s heart is healthy. Even when a patient has no symptoms, the 2006 ACC/AHA Guidelines recommend mitral valve surgery in the following case: when her heart still functions well-enough, but she also has chronic, severe mitral valve leakage and elevated blood pressure in the arteries supplying her lungs. Since Hilary met all the requirements of these Guidelines, I had assumed that referral to a mitral valve repair center would be a mere formality, once the surgeon reviewed her records.

But as a result of his decision that she did not need surgery, the HMO would not approve referral. His short-sighted perspective checkmated our ability to seek outside surgical help and, perhaps, was not coincidental. We discovered later that he not only knew about mitral valve specialty centers, but had visited one recently. He chose not to tell us that much better options for Hilary’s treatment existed, forgetting or ignoring the part of his Hippocratic Oath that mattered most at the time: “I will not be ashamed to say ‘I know not,’ nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.”

Why did he give us misleading information? Was he careless in his assessment of her heart condition or simply out of touch with current medical thinking represented by the ACC/AHA Guidelines? Was he not clear about what he did not know? Alternatively, was he clear about what he did not know and, consequently, did not wish to operate on a 28-year-old woman with a severely-distorted valve he knew he could not fix? Was he motivated politically to use “lack of medical necessity” to deny referral and save his organization money? Ultimately, the reason did not matter. His lack of action protected his status and his organization, but put Hilary’s safety and well-being at risk. As a mother determined to protect her child’s health, I could not accept his judgment as final.

We now had two simultaneous challenges: first, to prove to our HMO that she needed surgery as soon as possible and, second, to search for a qualified mitral valve repair specialist who could mend a Barlow’s valve. All this while facing our own emotional reactions to her impending open-heart surgery.

I arranged for additional opinions from surgeons with four major mitral valve repair centers throughout the United States, each surgeon considered an expert at repairing Barlow’s valves. I asked them the same questions I had asked the HMO surgeon. Each confirmed that surgery should happen soon and that repair was likely. Hilary chose the hands she wished to fix her ailing valve.

We requested an out-of-network referral from the HMO’s Medical Center Review Committee. Our request cited supporting medical and surgical opinions, both inside and outside our HMO. It accompanied a labeled, cross-indexed binder, containing our previous correspondence with the HMO, letters from the consultants that clarified Hilary’s deteriorating condition, and copies of literature documenting the need for surgery with a qualified surgical team. The Review Committee, a group of administrative personnel and physicians who are not cardiac surgeons, would decide if open-heart surgery was “medically necessary” and whether to grant referral to an out-of-network facility. The reviewers consulted the cardiovascular surgery department at the HMO, but did not consider the opinions of the HMO cardiologists – the ones who said Hilary needed immediate surgery.

Within days the HMO Review Committee officially and firmly denied our request for out-of-network referral. They said there was “lack of medical necessity” and that their organization had “appropriately privileged and credentialed physicians available to provide this service,” if and when necessary.

The Committee referred us to another surgeon inside the HMO’s cardiovascular surgery department for a second opinion. No surprise that the “second opinion” was in concert with the first. Surgery wasn’t needed, he said, adding that he, too, was qualified to perform valve repair, if required. When I asked specifically about his statistics for Barlow’s valve repair, he said irritably, “My statistics are great.” I persisted, and eventually he said he did not know for sure what his statistics were, because “if the surgery didn’t go well, I wouldn’t know because the patient wouldn’t return to me, would he?” Presumably the patient died. If this comment was meant to be funny, it failed – we knew that this cardiovascular surgeon had even less experience with mitral valve repair surgery than the first one.

The Chief of Cardiovascular Surgery gave a third opinion. He never met with Hilary, and he agreed with his colleagues.

After three denials that spanned seven months, I felt stumped and again doubted my own hard-won understanding. Had they seen something in the data that I had missed – something that proved Hilary’s situation was not so bad and that she should wait? For my own sanity, I put together a simple chart of her heart measurements, from age seven to the present. The changes were unmistakable, even to a non-M.D. like me.

I contacted San Francisco attorney Arnold Levinson, who had guided our communications with our HMO and, in his unlimited graciousness, not charged one penny for his help. I told him we’d had our final rejection from the HMO, that my newly-created chart of numbers showed we were right about the changes in Hilary’s heart, and I guessed it was time to contact the State Board of Managed Health Care for an Independent Medical Review. “It’s premature,” he said. “Why are you letting the word ‘final’ get to you? If you have new information, your HMO is legally required to consider it.” He then asked about my chart of numbers and whether I could think of one more person in the HMO to meet with – one person to show my numbers, who might be willing to help.

The chart by now had become a folder; here are a few of the relevant numbers.

1. Echocardiogram 12/27/07: LVID, d 6.5 cm
2. Echocardiogram 01/08/08: LVID, d 6.2 cm
   
3. Echocardiogram 02/25/08: LVID, d 5.80 cm
   
4. Echocardiogram 05/21/08: LVEF: .55 or 55% – moderately severe mitral regurgitation
   

^{“LVID, d” = Left Ventricular Internal Dimension. When the heart is working too hard the muscle grows thicker, and the internal dimension shrinks. This reduces the ventricle’s capacity, which is not good.}

^{“LVEF” = Left Ventricular Ejection Fraction, a measure of how well the heart is pumping out the blood.}

I mentioned a retired surgeon. “Go see him,” said Arnie.

We told the surgeon that we had gotten such a range of opinions we didn’t know what to think. Initially, he stonewalled. But as he saw Hilary’s clear distress and, finally, looked at my chart of numbers, he paused.

I said, “We need to know whether this is the time for surgery.” He nodded. “It’s time?” I asked. “Yes, you are in the window when it needs to happen.” Hilary and I both dissolved in tears. After a moment to gather myself, I then asked the second big question: “Should her surgery be done by the HMO?” “No,” he said, “we cannot do that surgery.” He said referring Hilary to a specialty center focusing on Barlow’s valves would be comparable to referring heart transplant patients to an outside center specializing in transplants.

Within hours of submitting the new information, my chart summarizing years of data and the retired surgeon’s opinion, the HMO rejected it, saying, in essence, “What part of ‘final’ don’t you understand?”

This event triggered our last appeal, to the State Board of Managed Health Care. The board referred it immediately to the Center for Health Dispute Resolution (CHDR). Within ten days of receiving my request for an Independent Medical Review, the CHDR overruled our HMO’s denials. They cited the extensive case file, including all the letters, expert opinions, and research materials that no one in the HMO seemed to have read. The CHDR then said that due to severe Barlow’s disease, Hilary needed a complex repair, that only a specialist was qualified to perform it, and that the surgery was medically necessary.

Against all odds, we had succeeded, through stubborn perseverance, self-education, and self-advocacy.

Within days, the HMO contacted Hilary about travel arrangements and lodging while recovering from surgery. Less than a month later, Drs. David Adams and Ani Anyanwu, at the Mount Sinai Medical Center in New York City, successfully repaired Hilary’s mitral valve. Her heart valve function is now essentially normal. It no longer leaks, and she has her life back. You might say Hilary found her pair of ruby slippers, in spite of the Wizards’ misguided attempts to keep them from her.

Dr. Adams has referred to the increasing opportunity for mitral valve repair as a “revolution.” The late mythologist Joseph Campbell said, “Revolution doesn’t have to do with smashing something; it has to do with bringing something forth.”  If mitral valve repair ‘brings forth’ the patient’s ability to live a healthy life, with her own repaired valve, then they are both correct.