The Wall Street Journal today has several articles of interest to SPM members.

1) Amy Dockser Marcus reports on Frustrated ALS patients creating/testing drugs

2) Lauro Landro reports on a “simple idea that is transforming health care“: quality of life – what patients care about:

“…now health-care providers are also adding a whole different, more subjective measure—how people feel about their condition and overall well-being. They’re pushing for programs where nurses or trained counselors meet with people and ask personal questions like: Is your condition inhibiting your life? Is it making you less happy? Does it make it hard to cope day to day? Then the counselors offer advice about managing those problems and follow up regularly.

The logic is simple. People are more likely to manage their condition properly when they have more accessible, personal goals.” (Emphasis added)

3) Amy Dockser Marcus again on “Patients as Partners.” Imagine that! the “power of collaboration” – about the C3N project at Cincinnati Children’s Hospital. (See intro below)

4) This is for [ACOR founder] Gilles Frydman: Melinda Beck writes: “Researchers Tune In to the Internet Buzz” - ”Message-board chatter and Twitter feeds may provide a road map to areas that deserve further study.”

============

Here’s the start of Marcus’s article. Notice the title and “the power of collaboration” -

Patients as Partners

An online network for sufferers of inflammatory bowel disease provides some clues to the power of collaboration
By AMY DOCKSER MARCUS

Doctors around the country have enlisted some new helpers in the fight against chronic disease—their patients.

A few years ago, a far-flung group of pediatric gastroenterologists set up an online network where they could share data and treatment strategies for children and adolescents with inflammatory bowel disease, in hopes of improving outcomes. It worked—up to a point. The remission rate jumped to 75% from 50% at some of the centers, but then hit a ceiling.

Some of the doctors raised a provocative question: Could they get even better results by bringing patients and parents into the effort?

Patients would experiment with new treatments and closely monitor how the regimens affected them day to day, then feed the data into the online network through computers or smartphones for doctors to examine. The patients could also use the network for things like social support, finding other patients who shared similar interests or lived near them.

“We were very focused on improving outcomes, but we were doing it without the families,” says Richard B. Colletti of the University of Vermont College of Medicine, director of the doctor-founded network. “Until parents and patients are true partners, you can’t get the best outcomes.” …

========

Other articles in the section – I love that people are finally seeing that value in healthcare can arise from somewhere other than the doctor’s office and more treatment spending:

• The Wireless Revolution Hits Medicine: half-page interview with Eric Topol, author of the great new book The Creative Destruction of Medicine - “Eric Topol talks about innovations that promise to transform the delivery of health care, involving DNA sequencing, smartphone apps that use biosensors and high-definition imaging.”
• The Y Takes On Diabetes: “A diabetes-prevention program at the YMCA is helping people lose weight and could help companies save money. It’s also demonstrating the potential for a community-based organization to deliver a nationwide health-care intervention.”
• Numbers, Numbers and More Numbers: “Insurers, pharmacy benefit managers and health-care providers are pushing data analysis to new heights.”
• Meet George Jetson, M.D.: “Today’s health-care industry is making increasing use of Web-based virtual agents and avatars—computerized assistants that not only perform clerical duties but also dispense medical information.”
• Drug Discovery Gets an Upgrade: “Pharmaceutical companies are using powerful computers to increase their chance of success, manipulating molecules to create custom-made compounds.”
• If Only Heart Attacks Were Predictable: “Boston cardiologist James Muller, who founded InfraReDx, finds his quest to develop a test has been both long and elusive.”
• All the World Isn’t a Stage, but Some Med Classes Are: “The latest in medical education: simulations that offer hands-on training, the intense pressure of hospital work, and none of the risk. Video: Medical Manikins Simulate Real-Life Emergencies”
• Treating Wounds—the Holistic Way: “New treatments for chronic wounds have flooded the market. But a New York medical center may show that the most effective approach is preventing small problems from getting out of control in the first place.” My snarky thought: What?? That’s bad for the provider’s revenue! :-)

With this newly discovered attentive audience, I did not miss the teaching rounds at all.

I discovered that people without any medical background can easily understand complex medical issues if you tell it to them in a language they understand.

Follow him on Twitter at @NabinSapkotaMD. You may also be interested in his book project “Symptoms and Diagnosis,” with the tagline “Ask not what the symptoms of a disease are; ask what the symptoms of a particular patient mean.”

Here is his post.
______ 

I visited Nebraska for the first time when I was in my third year of internal medicine residency at John H Stroger Hospital of Cook County in Chicago. We loved the small town Mid-Western charm of Nebraska so much that we decided to move there. I started working in the community hospital and I loved my job. It was a sharp contrast from the overcrowded Chicago hospital where we were used to patients not fully trusting the doctors and always testing the waters to see if they are not getting the treatment they really need. In the small community hospitals in Nebraska, people had so much trust in their doctors, it sometimes overwhelmed with a heightened sense of responsibility. As I explained the different treatment options to the family and asked what they would want, the most common response I got was, “Doctor, what would you do if she was your mother?”

When people trust you this much, every medical decision becomes personal and you want to give back as much as you can to the community.

During my residency, I loved the academic setting. I admired the teaching and learning but I was not very comfortable with the idea of somewhat impersonal nature of the doctor patient encounters in teaching hospitals. When you are rounding on your patient with five other doctors in the room, how can the patient identify with you and trust you to make the best decision for you?

I love the personal nature of my hospital rounds in Nebraska where I can talk one-on-one with my patients and make the best decisions for the patients without any barriers. I did miss the teaching rounds but slowly I started using the whiteboard again. This time it was the whiteboard in the patient’s room where the nurses write down the vitals and other reminders. I started teaching patients a little more about their diseases with simple anatomic diagrams. I was amused by how much interest they had in the diagrams and what I had to say. With this newly discovered attentive audience, I did not miss the teaching rounds at all. I discovered that people without any medical background can easily understand complex medical issues if you tell it to them in a language they understand. It was so much more satisfying to teach this new audience than teaching the crowd of overworked medical students in Chicago.

My main goal of these teachings was to try to involve the patients as much as I could in making the medical decisions. I was probably trying to teach them more so that they would not have to ask me the what-would-you-do-if-she-was-your-mother question. But, as I started this practice, I realized the patients were happier and were recovering sooner as they were actively participating in their care. I then started writing a short bimonthly medical column in the local newspaper to teach the same thing to more people in the community. I was surprised to find out so many people still read newspapers in this day and age. It was a great pleasure when when patients would recognize me from the paper and told me they liked my column.

I enjoyed this process so much I wanted to do more. I started a project to teach more people. I wanted to reach out to people like those in my community who get their health care in community hospitals and trust their doctors to make the medical decisions for them.

I think the best way to teach medicine is to start from the patient. That is what they do in residency trainings to prepare doctors for the real world. I believe that this same approach will work in the community as long as you tell the story in a language that does not involve any medical jargon. The people in the hospital room were very interested in what I had to say because they knew it was about the person in the room. If I start the story with a real person that my readers can identify with, I may be able to capture their attention and have them learn about otherwise mundane topic of symptoms and diagnosis. It is mundane and unimportant until it happens to someone you know.

As I was looking to spread the words about my project, I wanted to see if patients are willing or ready to actually learn more about their diseases and participate in making medical decisions. I then googled several terms including patients, participate and medical decision making and was very happy to learn about the participatory medicine movement. I was very happy to learn that more and more patients are demanding to actively participate in their care and learn more about their diagnosis. I was also excited to see many doctors embracing this idea and actively participating in participatory medicine. I will be very happy to join forces with you in promoting this idea. I can help spread the concept of participatory medicine from big city academic university teaching hospitals to community hospitals where more than 50% of americans get their medical care. Unlike the big city university hospitals, patients in these communities need more encouragement to participate in their care and that is what I plan to do.

Thank you

Nabin Sapkota, MD
Omaha, NE

There’s a new ending, at bottom. 

There’s nothing here that will be a surprise to any experienced patient advocate, but it may be useful to newbies. (If you’re not familiar with our movement, e-patients are Empowered, Engaged in their care, Equipped, Enabled… pick your e. We and our clinicians have a Society for Participatory Medicine, about patient-provider partnerships.)
________________

I noted two weeks ago that when I got a prescription for new glasses, the optometrist (eye measurement guy) said his eye-puff-tester found high pressure in one eye. Re-tests said yeah, I have high intraocular pressure, which can be a precursor to glaucoma, which can cause blindness.  Good example of a simple routine screening test finding something before it becomes a problem. Rx: go to the ophthalmologist (eye doctor, as in MD).

(The high pressure is often caused by failure to drain the fluid (aqueous humor) that’s constantly flowing into the eye… pressure builds up, and can damage the optic nerve, generally starting at the edges – the blindness often starts as a loss of peripheral vision.)

Well, I don’t really have an eye doctor, but the only shop in town (literally) is Nashua Eye Associates, so I called them. I got hooked up with a doctor, who did an exam with a fancier machine and said yeah, I have high pressure in both eyes. But my optic nerve looks  fine, and so does the “optical angle,” where the fluid drains. So, no problem yet.

She prescribes eye drops to promote drainage. $9 co-pay. We discuss the two additional tests I need, after which she’ll see me again.

Now:

Expression of e-Patient #1: gimme my data

My primary, Dr. Sands, had asked for a copy of my visit notes so he could incorporate them in his system. I asked the front desk, and they insisted that I sign a HIPAA release form. Privately I rolled my eyes; a HIPAA release is my permission for them to give my data to someone else – not to myself. But this one’s not a fight worth fighting; at least they didn’t resist giving it to me, as some practices do. Yay.

Expression of e-Patient #2: scheduling that works

I call in to schedule the two tests and visit. They say the first date available is May.(!!)  I say “If I’m progressing toward glaucoma, I really don’t want to wait three months for the next update.” Some dialog reveals the staff person’s sense that I’m supposed to have both tests and see the doc on the same day, perhaps to avoid multiple trips. But I live 5 minutes away and work at home.

Eventually I ask to speak to a manager. This guy’s sharp and quick; a few questions, and it turns out I can do them separately. Yay: by expressing my needs effectively, we break through the non-existent requirement and I get what I need.

Expression of e-Patient #3: expecting appropriate information

The drops burn the hell out of my eye – redness, itching, swelling. On the second day I say “Enough!” and call to get them changed. I come in, and the doc asks why I want to change, and I cite the burning. She says, “Yes, they do that for the first week.”

What???

Me, approximately: “Was I supposed to know that? … Was there some patient education flyer I was supposed to get, to tell me what to expect? Is there anything I was supposed to do if that happened?”

Her: silence; the look on her face politely suggests “What’s your problem?” And she doesn’t answer, just looks away.

Me, explaining e-patient: “I’m the kind of patient who likes to know what’s going on – I like to understand as much as I can.” She smiles, nods, chuckles a little and orders (online) another prescription. We briefly note my upcoming tests and I leave.

This one’s a $45 co-pay. “Nice of her to warn me,” I think to myself. It’s still not pleasant, but it doesn’t hurt. The eyes itch, but I’m also getting over a cold. I’m careful not to rub the eyeball itself; I have much experience over the years at safely getting grit out of my eyes, lifting the eyelid the right way, etc.

I go off to the HIMSS conference in Las Vegas – an eight day trip.

Expression of e-Patient #4: finding a doctor who’s a good match for my style

Two days ago (Sunday night) it got bad: I got really tormented, could not make it stop being uncomfortable. By bedtime I asked my wife to look. (Veterinarians make a lot less than MDs, but that’s because (he said ironically) they handle all specialties for multiple species :-), so she has plenty of experience at examining mammal eyes that have things in them.)

She sees that I now have a raised lesion on the white of the problem eye, which (with some difficulty) I can see in the mirror. She rinses it with copious amounts of saline solution, which we’d bought the day before.  I keep the eye closed and sleep well. In the morning, bang, immediately I call Nashua Eye and ask to see a doc stat.

Happily for me, this time I get someone different: Dr. Riddle. This is my kinda doc: fast, thorough, steady patter of information as he examines my eye, while the tech Holly enters what he’s saying into their EMR. (Which, btw, got upgraded over the weekend and is Not Working At All Well.)

Riddle is my kinda guy. A dye test (which Ginny suspected he’d do) says the eyeball is not scratched (good). He says the lesion is in fact a reaction to the first drops I had, even though I’d only used them two days, two weeks ago; it’s gotten irritated. Twice he asks whether my eyes were examined when I first returned with the burning, as he’d just examined them; no, I say, twice: she just gave me the other prescription. Hm.

He also notes twice that the visit wasn’t recorded in the EMR – they found the new script recorded as a progress note appended to the previous visit. I guess if there was no exam, that might be reasonable, but I don’t know the protocol in their practice.

He also says that whether to treat my level of pressure (25 & 26) [deleted 3/1/12 - see note at bottom] is up for debate; some docs do, but treatment always has costs & risks, so he wouldn’t. But considering my reaction to the drops, he suggests ditching the existing drops and just giving me something to treat the irritation.

To him, too, I describe my preference for information and engagement. He’s receptive enough that I progress to describing SPM.

Expression of e-Patient #5: communicating my concerns

I’m asking the practice to change me to be Dr. Riddle’s patient. My remaining test is Thursday, and I’ll see him again. Then I need to let the first doctor know what didn’t work for me, and let the practice manager know.

p.s. Crap, now I gotta get (paper) copies of all those records for Dr. Sands…. boy will I be glad when we have health information exchange, and nifty new software that pulls it all together so this isn’t such a chore! Thanks to the regulators at HHS who are finally carving out the stones that will make that a reality – a few years from now. And thanks to the innovators who will tie it all together – get to work, you guys! How are we supposed to be responsible engaged patients if this is so much work, for us and for the providers??

—

March 1 update

Today I had my final test (which had been proposed for May) and follow-up with Dr. Riddle. Short summary:

• Today’s pressure test was 15 and 13; my previous one as 17 and 15. It’s puzzling that four tests December-January tests all showed the left eye at 22+, but he said it happens.
• Today’s OCT test (evaluating the thickness of the nerve layer) was fine.
• He said there’s wide wide variation in how people practice, and he’s at the conservative end.

Well, wouldn’t you know it, life has provided me with a case study – myself.

Last week I learned I have a basal cell carcinoma, the least threatening kind of skin cancer. On my personal site I wrote about it, and said my approach would include …

• Connect with a patient community (skin cancer patients), if I can find one…. [Update: I've already had people submit four communities there]
• Learn what I can about the disease: what is basal-cell carcinoma, anyway? …
• Assess my treatment options. … what are my options for different providers?
  • I have $10,000 deductible health insurance, so this will come out of my own pocket, and you can bet I’ll be asking around: “Hey doc! What’s my cost going to be? What-all will I be billed for, line by line? And what’s your outcomes data? Thanks! :-)”
  • And yes, I will negotiate – like many Americans today, I pretty much have to. “Can you do any better on the price?” I won’t choose based on the cheapest bid (that can be suicidal), but price will definitely be a factor.
  • “Bidders,” note: I’m willing to travel if I find a great clinic at a great price. If I can save $3,000 with $1,000 of travel costs, you bet I will! This is the glory of consumer mobility: as we fall out of the insurance system, we can go “out of network” as much as we want, because we’re on our own. At last.

Then, Saturday morning I realized I want to do the same thing businesses do (including hospitals) when they want to buy something: issue a Request For Proposal (RFP).

With an RFP, the buyer (a company, or me in this case) doesn’t know from whom they’ll buy, but there may be differences that matter a lot. So they write a document that says what’s important to them and circulate it, hoping to find a really good fit for their needs.

A second post announcing my RFP, and linking to it in Google Docs, is here.

I must say I’m surprised at some of the reaction – a couple of people have referred to it as a “reverse auction,” which is a method purchasing agents use to get the lowest price. Price is important to me, but as it says above, I am not lookin’ for the low-price bidder!  I’m looking for the care I want. 

Please, before you comment on this idea, please look at what I wrote – both my rationale in the first post, and the RFP itself. Thanks!

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

• This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

• This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

“I don’t know, but I can try to find out” is the default setting for people with health questions.

• 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.

“I know, and I want to share my knowledge” is the leading edge of health care.

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare.

As always, I would love to hear from people about what’s missing or what they wish we’d study. I welcome comments (below), tweets (@SusannahFox), and emails (sfox at pewinternet dot org).

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

I’ll write more about it but for now I want to just get this started, because I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

• Top level hashtag #MLhw12 - 
• web page here
• feed & archive here
• participate live on Tweetchat here

• Project 1 – pain management including skin conductance and data-reporting pillbox (#MLpain)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 2 – asthma management with toy-like spirometer (#MLasthma)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 3 – cardiac rehab with a Microsoft Kinect and pulse oximeter (#MLcardiac)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 4 – Integrating MOTOACTV Fitness Tracker w Hypertension and Diabetes Management – with a hacked insulin pen (#MLdiab)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 5 – humanizing mobile health apps by tying people’s life goals to their medical metrics (#MLlifegoals).
  I especially love this one – I tweeted from the project’s description: “the problem is [most apps] focus on goals that lack true meaning to the user … apps focus on heart rate, when pt wants 2b able to play w/her grandkids for 5 min”
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 6 – management of post-op needs including a virtual pet that shows how well the child is doing (#MLpostop)
• description here
• feed & archive here
• participate live on Tweetchat here

What’s conspicuously different about this event compared to any other I’ve seen:

In this room, if what needs to get done isn’t getting done, it’s viewed as a system failure, not a “patient compliance” problem. These people are striving to make everything work better, in our hands.

After 150 events in two years (medical conferences, tech events, policy meetings), I’ve concluded that medicine’s single most important dysfunction is the idea that useful wisdom comes only from biology (or other medical innovations), and it’s up to us to use whatever they danged well give us, containing that received wisdom.

So when patients don’t do what they’re told, it’s a “compliance” problem – and people in healthcare bitch about how irresponsible we are. Even the October Health Leaders magazine had this near the start – in its “Patient Engagement” issue!

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations.

Meh! How about you guys get your act together and give us methods that work for us? 

I mean, seriously: in what other industry can they respond to “This is hard to use” and “I don’t like doing this” by saying “You’re just not good enough for our wonderful inventions”?

I used to work in software companies that tried that approach. They went out of business when innovators came along who understood that easy to use gets done better, and people like it more.

A great example is GlowCaps – a pill bottle cap that glows, beeps, or texts you when it’s time to take your pills. (Check out the “adherence” results from a clinical trial – nearly perfect! No change in patient “morality” – just a better freakin’ tool for us to use.)  (David Rose, formerly of that company (now sold), is in this event.)

Here’s to the people working on these challenges. If you’re a Twitter fiend, follow those hashtags and let the innovators know what you like.

p.s. Anyone who wants to complain about patient “compliance,” please remember that the shoe’s on the other foot with clinician “quality”: hospital workers only wash hands per protocol about half the time, physicians prescribe the standard of care only half the time. The result, as Susannah Fox blogged about Peter Margolis, is that “.5 x .5 = .25″ – the shared unworkability of everything means clinicians do what they’re told half the time, and patients do too, so healthcare on balance operates at 25% efficiency.

And we grouse about rising costs and fail fail fail.

Here’s to the geeks who understand what works.

My personal favorites among several quotable lines in this article:

“Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our ‘product.’ In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.”

and

“Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients.”

Happy New Year, dear readers! May 2012 bring us closer to attaining patient-centered care.

First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post:

• “Look at your medical record. … As health information exchanges, and collaborative networks enable the sharing of information – – – that can work both to your benefit, as well as  amplify the risk of harm.   Bad information in… bad information out.”
• “when your physician or healthcare provider is discussing their thoughts on your diagnosis, and a possible treatment plan, it is extremely important that you feel comfortable in questioning either the diagnosis or the treatment plan and asking whether other options or possible diagnoses are possible“
• “Although many patients do in fact seek second or third opinions from a specialist, they rarely seek second opinions, if ever, on diagnostic studies. …
• The very same holds true for pathology specimens. There are pathologists who are highly sub specialized in certain areas and thus are far better qualified to determine  whether or not a tumor they’re looking at is malignant, benign, and what subtype of tumor it might be – – – which could make the world of difference when determining what treatments are available.”

There’s more – hm, should we have a quiz on Friday??

The other was from Amy Romano (@MidwifeAmy) of Childbirth Connection, who’s appeared many times here: How to Get Good Maternity Care, on the Lamaze International Science & Sensibility blog. It’s got multiple resources – here’s one, a slide show of their ten pointers:

Also available on the post is a PDF of the tips and a short video, Childbirth with a Heart, that makes a great case in just 2:32 for being actively engaged in all aspects of birth – not just the naming.

Thanks to both of these professionals – a physician and a midwife – for sharing these empowering and enabling posts. Each supports patients being active, responsible partners in participatory medicine.

I hope to absorb it in the next day or two, and I invite people who know this history to do the same. It’s deep, and it’s connected to our roots here: when I went googling for the photo at left I discovered that our “Doc Tom”‘s Ferguson Report gave Weed an Outstanding Achievement Award.   In 1999.  To wit:

“Dr. Larry Weed is a pioneering visionary of Information Age health care. He deserves a Nobel Prize in Medicine–maybe two. After reinventing the patient medical record as the Problem-Oriented Medical Record and developing one of the first systems for computer-based patient records from 1956-1982, he set out to develop a computer-based tool, the problem-knowledge coupler, to provide just-in-time computer support to the provider and the patient as they work through the process of diagnosing and treating a n ew medical problem. His vision of a coherent health care system based on a new generation of computer tools points the way toward the next generation of medical thinking.”

In this new interview, 12 years farther down the road, computers are immensely more powerful than what he had then, and he has a decade more experience working with knowledge couplers. What has he seen, and what does he see looking forward? Wow.

(The other awardee in that Ferguson Report is none other than ACOR founder and SPM co-founder Gilles Frydman. Time capsule!)

A taste of the interview:

The true depth of the knowledge problem in medicine occurred to me when I found myself doing basic research in biochemistry at a university medical school.  As a scientist in the laboratory I was dealing with one problem at a time, making time and tasks the variable and achievement the constant. … I was asked to teach clinical medicine on the wards a couple months a year. It was at this point that the true nature of our predicament dawned on me. …

The multiplicity of problems the physician must deal with every day constitutes a principal distinguishing feature between a physician’s activities and those of many other scientists.

These realizations led me to develop the POMR [problem oriented medical record] so that medical students and practitioners could function in a structured, rigorous way more like that of workers in the scientific community. The POMR cannot change the multiplicity of problems that physicians face. But the POMR enables a highly organized approach to that complexity.

I cheated and skipped to the end of the piece, for his “look ahead,” and found these:

I have heard you eloquently make the case that the present practice of medicine is flawed in that it primarily depends on the physician’s limited memory and processing capacity when dealing with complex patient issues. What is your solution?

LW: I have spent more than 30 years developing and implementing what I have called “knowledge couplers.” Medical knowledge is used to select and analyze patient data, coupling the data in a matrix fashion with medical knowledge developed through research. The output of this coupling process is an organized display of options and evidence. …

… any automation that reliably couples patient data with the world’s medical research will be dramatically better than the unaided human mind.

The “knowledge couplers” are to be used, he says, in conjunction with the POMR and reform of medical education and credentialing. (I’d be laughed out of the discussion circuit if I proposed that – will Dr. Weed be marginalized for it?)

And this:

You have expressed concerns with both the type of individual accepted in medical school as well as how medical students are taught in their first two years. Could you tell our readers what you see as the issues and the implications to preparing these students to practice medicine?

LW: Today, students are recruited on the basis of how well they memorize and regurgitate facts. In the future because knowledge will be in information technology tools instead of in heads, students should be trained in the reliability of performance of given tasks that will be part of a complete medical care system. Students should be selected for their hands-on skills and interpersonal skills and not on the basis of their memory and regurgitation of facts.

And:

Your writings make a very compelling argument for these changes in medical education. Yet, such changes are largely absent from health reform debates. Why do you think there has been such a complete lack of a dialogue on the subject? If educators disagree, why aren’t they saying so?

LW: The system that I just described is very threatening to many educators who are now in the business of moving knowledge through heads instead of using information technology such as knowledge coupling tools. They are judging students on how much they know instead of how well they perform in a well-defined and audited system of care. …

Enough – if you’re interested in this examination of the very nature of a doctor’s work, please read the whole article, and we’ll discuss.

Hacía tiempo que teníamos en mente la posibilidad de llevar a cabo la traducción del Libro Blanco de los e-Pacientes al Español, ya que con más de 420 millones de hispanoparlantes en todo el planeta, nuestro idioma es ya la segunda lengua más hablada en el mundo, y la tercera más usada en Internet. De hecho hay casi la misma cantidad de hispanoparlantes en EEUU que en España.

Así fue como a raíz de la presentación de Dave deBronkart en las jornadas celebradas en Bilbao (España) Pacientes y profesionales en la Web 2.0, durante el pasado mes de julio de 2011, esta idea tomó fuerza. De este modo, un grupo de 7 españoles con diferentes profesiones y de distintas partes del país, pero con el interés común de querer fomentar y dar a conocer al mayor número de personas la revolución de los e-pacientes, nos organizamos a través de Twitter y, después de unos meses de trabajo en equipo, la versión Española del Libro Blanco de los e-Pacientes es ahora una realidad.

El movimiento de los e-Pacientes surgido en EEUU se ha convertido en un fenómeno en claro crecimiento gracias a la Web 2.0. Uno de los intereses más universales en Internet es la Salud, y por tanto, cualquier persona con acceso a Internet es potencialmente un e-Paciente independientemente de su nacionalidad. Buscar información sanitaria en Internet no nos hace e-Pacientes. Es un síntoma de un cambio más radical, hacia los ciudadanos más capacitados-empoderados y comprometidos con su salud. Si tomamos decisiones informadas al comprar una casa, ¿por qué no sobre nuestra salud? Los e-Pacientes están llamados a tomar decisiones sobre su salud en una estrecha colaboración con los profesionales sanitarios. Internet es sólo una herramienta más, una puerta de enlace para encontrar información y socializar. Los verdaderos e-Pacientes no se creen todo lo que ven en Internet, sino que adquieren un conjunto de habilidades para encontrar información de calidad, aprenden a separar el grano de la paja.

Y dentro de este contexto, la comunidad hispana en torno a la salud 2.0 está en plena ebullición. Es imposible mencionar todas las personas involucradas en la temática, desde las trincheras de la atención primaria a investigadores en centros de I+D. La Web 2.0 ya se está utilizando en beneficio de pacientes y los profesionales hispano hablantes. Por ejemplo, hay casos de blogs de pacientes en español con más de 600.000 seguidores (por ejemplo, Diario de Pedro), hay comunidades de pacientes con miles de miembros (p.e. EsTuDiabetes) y también hay comunidades donde pacientes y profesionales trabajan conjuntamente forumclinic. Los hospitales españoles también están comenzando a ponerse al día en el uso del social media (observatics). Todos ellos trabajando-soñando con mejorar nuestra salud y sistemas sanitarios usando la Web 2.0. Junto a las innumerables iniciativas, también hay un intenso debate sobre el impacto de la Web 2.0 en la atención sanitaria, tales como los debates twitter semanales #hcsmeuES desde España y #hcsmla desde América Latina. Conferencias y desconferencias se organizan cada vez con una mayor frecuencia. La comunidad ha creado también el directorio de recursos Españoles sobre la Salud 2.0 wikisanidad. También hemos de destacar el libro sobre e-Pacientes y Redes Sociales que en pocos días consiguió miles de descargas (disponible en: www.salud20.es). Otro evento de especial interés fue la realización de Manifiesto de Abla (www.salud20.es/manifiesto) que propone una serie de principios para conseguir una sanidad más participativa con el uso de Internet, un manifiesto que fue redactado por más de 70 autores de forma colaborativa usando herramientas como Google Docs y Twitter.

Pero todo esto no acaba aquí, hay muchos proyectos e ideas brotando de la comunidad hispana sobre la Salud 2.0. Pertenecemos a una comunidad global de personas que creen que la Web 2.0 puede mejorar nuestros sistemas sanitarios. Debemos unir esfuerzos con nuestros compañeros de viaje en los EEUU y del resto del mundo, pues hablando se entiende la gente y de esa manera aprenderemos los unos de los otros.

Elia Gabarron (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editores de la versión española Libro Blanco de los e-Pacientes

To read this post in Spanish, click here.

From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández Luque:

For some time we’ve had in mind the possibility of carrying out the translation of the e-Patient White Paper into Spanish, because with more than 420 million of Spanish speakers worldwide, our language is now the second most spoken language in the world, and the third most widely used in Internet. In fact, there are almost as many Spanish speakers in the US as in Spain.

After Dave deBronkart’s presentation at a conference held in Bilbao (Spain) last July, Patients and professionals in Web 2.0, this idea gained momentum. A group of seven Spanish people with different professions and from different areas of the country, but with the common interest of encouraging and showing as many people as possible the e-patient revolution, organized ourselves through Twitter. After a few months’ teamwork, the Spanish version of the e-Patient White Paper is now a reality.

The e-patient movement that emerged in the U.S. has clearly become a phenomenon thanks to the growth of Web 2.0. One of the most universal interests on the Internet is health, and therefore, anyone with Internet access is potentially an e-patient regardless of their nationality. To find health information on the Internet does not make us e-patients. It is a symptom of a more radical shift towards more skilled citizens, empowered and committed with their health. If we seek information to decide when we’re buying a home, why not with our health? e-Patients are called to make decisions about their health in close collaboration with health professionals. The internet is just another tool, a gateway to find information and socialize. Real e-Patients don’t believe everything they find online, they develop a set of skills to find quality information; they learn how to separate the sheep from the goats.

Within this context, the Hispanic community about health 2.0 is in full swing. It is impossible to list everyone involved in the issue, from the trenches of primary care to R&D researchers. Web 2.0 is already being used for the benefit of both patients and Spanish-speaking professionals. For example, there are Spanish patient blogs with over 600,000 followers (eg, Diario de Pedro), there are communities with thousands of members (eg EsTuDiabetes), and there are also communities where patients and professionals work together like forumclinic. Spanish hospitals are also beginning to get up to date with the use of social media (observatics). All of them, working-dreaming about improving our health and health systems using Web 2.0.

Along with the many initiatives, there is also an intense debate about the impact of Web 2.0 in healthcare, debates such as the weekly twitter chat #hcsmeuES from Spain and #hcsmla from Latin America. Conferences and un-conferences are organized with increasing frequency. The community has also created a directory of resources for Spanish Health 2.0, wikisanidad. In addition, we must highlight the book about e-Patients and Social Networks that has been downloaded thousands of times in a few days (available at www.salud20.es). Another very good example of collaboration towards participatory medicine and Web 2.0 is the Manifest of Abla, www.salud20.es/manifiesto, written collaboratively by more than 70 authors using tools such as Google Docs and Twitter.

But it doesn’t end here. There are many projects and ideas flowing from the Hispanic community about Health 2.0. We belong to a global community of people who believe that Web 2.0 can improve our health systems. We must join hands with our fellow travelers from the U.S. and from around the world, because the way to work things out is by talking.

Elia Gabarrón (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editors of the e-Patient White Paper Spanish version

Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:

“Should I refuse my dinner because I don’t understand the digestive system?”

It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”

The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order.

In the 1900s brutish early treatments (no more sophisticated than leeching) became more scientific. Inevitably some researchers then urged that we not try new treatments on humans until we know exactly what cancer is – basically, don’t move forward until we’ve got it figured out – with confidence. But meanwhile, people were dying.

As I wrote three years ago on my personal blog:

On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?

In my own case, my oncologist says there’s a 50% chance my disease will return, and there’s no way to predict which one I’ll be.

So we live, with uncertainty.

Participatory patients and physicians alike should accept that medicine is uncertain. Jerome Groopman MD’s excellent How Doctors Think even says 10-15% of all diagnoses turn out to be wrong, on autopsy. Fittingly, his epilogue it written to the (engaged) patient – how to discuss things anew with your doctor when the treatment isn’t working.

Science keeps pushing toward certainty, and disease doesn’t wait. Perhaps if we acknowledged the difficulty of diagnosis, and if more physicians were allowed and willing in our culture to express doubt, patient questions would be welcome and we could work more collaboratively.

By the way, the Wikipedia article on Heaviside has a different version of the quote: “I do not refuse my dinner simply because I do not understand the process of digestion.” Which to believe? Googling says the Wikipedia version is on 1,310 web pages and the book’s version is only on three.

What do you do in the face of uncertainty? How many sources do you check before you decide to move forward?

Forgive me for mixing my metaphors (or whatever it is I just did), but even though there are just a couple dozen words of regulations at issue here, this is a big deal.

When HIPAA established a federal right for each individual to obtain a copy of his or her health records, in paper or electronic format, there were a couple of types of records called out as specifically exempt from this general rule of data liberation, in the HIPAA Privacy Rule, 45 CFR § 164.524(a)(1): psychotherapy notes, information compiled for use in an administrative or court proceeding, and lab results from what is known as a CLIA lab or a CLIA-exempt lab (including  “reference labs,” as in your specimens get referred there by the lab that collects them, or freestanding labs that a patient may be referred to for a test; these are not the labs that are in-house at many doctors’ offices, hospitals and other health care facilities — the in-house labs are part of the “parent” provider organization and their results are part of the parents’ health records already subject to HIPAA).

(“CLIA” stands for the Clinical Laboratory Improvement Amendments of 1988, which established quality standards for certain laboratory testing.)

This carveout of lab results from patient-accessible records has long been a thorn in the side of the e-patient.  This month, the federales announced that they would step forward as Androcles to the e-patient lion (to jumble a reference or two), and pull out the thorn, by proposing to amend both the CLIA regs and the HIPAA regs.  The HIPAA regs include the exception described above: all records must be made accessible upon request except labs and a couple others.  The lab results exception will be deleted from the HIPAA regs if the change is finalized.  The CLIA regs prohibit lab delivery of results directly to patients.  The proposed amendment says that the labs “may” release the results directly to patients.  The net effect is that patients will have the right to request the results, and since labs will be permitted to release them, they will have to do so.

As some readers will recall, HIPAA regs were subjected to a state-by-state “pre-emption analysis” when they came out.  (Generally speaking, Federal law “pre-empts” state law unless state law is more protective of an individual’s rights or health.)  The feds note:

A number of States [most, actually] have laws that prohibit a laboratory from releasing a test report directly to the patient or that prohibit the release without the ordering provider’s consent. If adopted, the proposed changes to § 164.524 [of the HIPAA regs] would preempt any contrary State laws that prohibit the HIPAA-covered laboratory from directly providing access to the individual.

Thus, labs in most states have some work to do in figuring out how they will actually release results directly to patients once the regs are finalized and effective (which could be about a year, folks, so sit tight).

Here’s where it gets fun, folks:

While individuals can obtain test results through the ordering provider, we believe that the advent of certain health reform concepts (for example, individualized medicine and an individual’s active involvement in his or her own health care) would be best served by revisiting the CLIA limitations on the disclosure of laboratory test results.

CMS goes on to say that the HIT Policy Committee  at ONC, established by the HITECH Act, says that “CLIA regulations are perceived by some stakeholders as imposing barriers to the exchange of health information.  These stakeholders . . .  believe that the individual’s access to his or her own records is impeded, preventing patients from a more active role in their personal health care decisions ” … so we’re going to change them.  [Paraphrase and emphasis mine.]

Let me restate this, folks: the regs are being changed to give greater patient access to health data not because of a recent change in the law, but becuase patients and patient advocates spoke up, and the HIT Policy Committee got the message.

I had the opportunity to hear Dr. Farzad Mostashari (National Coordinator for Health IT), Lygeia Ricciardi (Senior Policy Advisor for Consumer eHealth), and Jodi Daniel (Director, Office of Policy & Planning) speak at an ONC town meeting at this week’s Health 2.0 conference and they are nothing if not passionate about promoting patient access to health data. (Please take a look at my mini video interviews with Dr. Mostashari and Ms. Ricciardi, if you need any confirmation.)

This change may improve patient access to lab results, but only if the right to obtain the results is ushered in together with an education campaign that alerts patients to this new right, and if the results are presented in a manner that includes some minimal level of interpretation (and I recognize that too much interpretation will cross the line into the communication that needs to take place between the patient and his or her clinician).  On the question of how lab results should be presented to patients, at Health 2.0, Thomas Goetz, of Wired magazine, presented a  patient-friendly lab report tool, to be rolled out soon by his company, 1 + 1 Labs.  Other approaches, of course, are possible, since numerous institutions already provide this data directly to patients.

A certain percentage of lab results never make their way to the patient — and the patient education piece of the rollout could result in that percentage being reduced, or even eliminated.

There is opposition to the proposed rule by some providers, who express a concern that a patient who receives lab results directly may well (a) misintepret a value that is “normal” for the population at large but that might not be “normal” for her and/or (b) fail to communicate with the clinician who ordered the test.  In our fee-for-service world, some cynics may say that some clinicians are being inappropriately incentivized to seek another billable patient encounter for discussion of results.  In the future of bundled, episodic, prospective payment systems, this would not be a concern.  In fact, since we will be asking the entire health care system to be doing more with less as a result of the nation’s fiscal and political environments, frictionless sharing of information should be welcomed by providers.  Providers will continue to receive lab results, and will continue to be expected to discuss them with their patients.

Comments on the draft rule are invited, and the Society for Participatory Medicine will be supporting this change.

One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:

It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.

So as you say, the power of patient groups works!

Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. The Wall Street Journal has a big megaphone and, in this article, used it to spread the word about this one patient network. Will it spark more coverage of other patient networks? Will it spark ideas for other clinicians and other patients who want to tap into the same zeitgeist of shared learning? Those are the questions that came to my mind as I read the comments and thought about the roadblocks and opportunities which face participatory medicine.

I was also struck by the following sentence, which began a lengthy comment about the need for universal health care:

I find it a disgrace that in today’s world, these women who are and have been so gravely ill, have had to become their own advocates in order to improve their diagnoses.

A disgrace? That is not a word that I would ever use to describe people with expertise who work together on a shared problem. But let’s hear more from this commenter:

There should be a protocol within the doctor’s practice, to assure these women are given what they need. They should not have to resort to online articles for their information nor should they be in the position of having to “band together to spur medical research.” Their job should be to get well. Their doctors and elected officials should be doing the heavy lifting.

As I stated at the top, I welcome the chance to read people’s unvarnished comments since I always learn something. Here, I’m learning about how people outside the world of patient networks might view this story and how far we need to go to communicate the reality of the situation. I don’t disagree that in a perfect world, there would be a “protocol” to get people the care they need. But sadly that is not always the case. People often do need to study up, talk with fellow patients and caregivers, search online, and otherwise do the “heavy lifting” involved in health care decision-making. In fact, I worry about the people who do not have access to high-quality information they can understand. For starters, please see: Internet access drives information access.

I’d love to hear what other people think about the WSJ article and comments. I’d also love to hear about other examples of pop-up comment threads related to peer-to-peer health care, participatory medicine, etc. What are you seeing? What are you learning?

Please, um, leave a comment!

My friend switched to another doctor who’s much more interested in partnering actively with patients – will discuss anything and even provided his cell number!

(My oral surgeon even gave me his home number. And he answers it.)

My friend said, “I’ve been thinking about e-patients a lot lately” as this unfolded. This is his/her first episode where the e-patient awakening (from past conversations) led to taking action in an empowered, engaged way.

I sent my friend a somewhat similar story from this blog, April 2009, about a longtime friend of mine, Elyse Chapman. It’s a classic. Please read it. This newly bereaved woman faced an apparent emergency, was absolutely respectful of her physicians and willing to do whatever it took, and then simply did what she could to explore her options. The outcome is inspiring.

Please read Elyse’s story – and the comment stream. It’s fascinating to look back and compare people’s views today (around here anyway) with how our community felt 28 months ago.

The FDA’s Risk Communication Advisory Committee has published a PDF book called  ”Communicating Risks and Benefits: An Evidence-Based User’s Guide.” It’s meant to help healthcare practitioners and researchers communicate their work with patients, care givers and the public at large. It’s a free download here (3MB) on the FDA’s website.

The 242-page book covers topics like goals of risk communication, evaluation, language to be used in the communication etc. Every chapter covers a summary of a chosen topic, drawn from multiple research papers on the topic, and includes additional resources for further research.

Some topics of interest to e-patients:

• The chapter about the language to be used in patient communications, written by Musa Mayer, the well-known breast cancer survivor and patient advocate.
• Chapter 17 is about Shared Decision Making, which we talk about a lot on this blog and on the SPM members listserv.
• Chapter 18 on health care news coverage is by Gary Schwitzer of Health News Review. He talks about how medical journalists tend to exaggerate the benefits and minimize potential harms.

This is a must read for all doctors and medical researchers. Please share with your friends and colleagues.

Participatory medicine depends on the availability of health information to all members of a care team. Communication – the exchange of thoughts, opinions, or information by speech, writing, video or signs including body language – continues to be a hotly debated, difficult to execute practice in healthcare. In this post I present some thoughts on the subject, and propose several concrete ways providers and e-patients can develop participatory methods.

There have been multiple studies over the years that reinforce the correlation between good communication among patients and providers and improved health outcomes. For example, Effective Physician-Patient Communication and Health Outcomes, a review of 21 studies revealed that 16 of the studies reported positive results, four reported negative (i.e., non-significant) results, and one was inconclusive. Among the key conclusions was that the quality of communication both in the history-taking segment of the visit and during discussion of the management plan was found to influence patient health outcomes.*

In fact, I contend that health information gathered from patient interviews, face-to-face exams and other communication between providers and patients, such as email or e-visits play a key role in treatment decisions, ongoing health monitoring, adherence and results.

Low expectations regarding teamwork and communication have for many years encouraged a culture where teamwork and collaboration are difficult to achieve. It’s ironic that ever since the publication in 2000, of the original IOM report, To Err Is Human, healthcare organizations have worked hard to improve patient systems and patient safety but most have failed to address poor communication habits that would enhance information sharing. It is clear that when health care professionals do not know what their colleagues are doing to manage a patient they are seeing, and when patients do not have the opportunity to share the information held by their providers, all the patient safety rules in the world cannot compensate.

For decades there has been a lot of talk about the need for training medical students in communication skills. It was not until June, 2004, that a communication skills component was added to the U.S. Medical Licensing Exam to test medical students on their ability to gather information from patients, perform a physical examination and communicate their findings to patients and colleagues.

The Agency for Healthcare Research and Quality (AHRQ) has developed CAHPS www.cahps.ahrq.gov (Consumer Assessment of Healthcare Providers and Systems), a public-private initiative to develop standardized surveys of patients’ experiences with ambulatory and facility-level care. CAHPS also publishes guidelines for patients to help them understand the important communication skills they need to improve their ability to share information with providers. Unfortunately not many patients know about these guidelines or access them. These guidelines include four areas:

1. Record Sharing- patient access to the electronic health record
2. Patient Question Lists – what to ask the doctor at a typical visit
3. Feed Forward – a questionnaire filled out by the patient prior to receiving care
4. Coached Care- teaching patients how to ask the right questions and be more assertive during a face-to –face visit with their physician

Health care consumers are by definition able to judge whether their clinicians communicate with them effectively. Many healthcare organizations including hospitals and health centers now strive to enforce good communication habits among their physicians and encourage their patients to participate in their care and collaborate with their providers. Many payers also work with enrollees to help them understand communication skills needed in their increased participatory role.

As e-Patients become more invested in the partnership model they may need to work at communicating with their providers. It is a two-way path where several things must happen:

1. Both patients and providers must improve their willingness and ability to share information.
2. For providers it begins with medical school training where a required course in communication skills should be mandatory. Additional communication skills training should be included in residency programs.
3. Providers also need to be more diligent about being absolutely sure they have full information on a patient at the point of care.
4.  Patients need guidelines regarding when and how to ask questions, be aggressive and speak up when they do not understand an explanation. They need to understand that there is no question too trivial to ask their provider when they are confused or unclear about a condition, treatment or medication.
5. Payers need to initiate and support programs that help providers and patients communicate more effectively so that some of the inefficiency and errors in medical care will be eliminated, saving time and money.

There is no industry where communication is not an essential component to keep things running smoothly and efficiently. In healthcare, however, communication can save lives and that is beyond essential.

* M A Stewart, Thames Valley Family Practice Research Unit, Centre for Studies in Family Medicine, University of Western Ontario, London, CMAJ-JAMC listed in Pub Med, (CMAJ 1995 May 1: 153(9) 1423-1433 PMCID PMC 1337906). www.ncbi.nih.gov/pmc/articles/PMc1337906/

See also Nancy’s November 2008 post here about a recent hospitalization.

One is Sue Woods MD MPH, a potent and high-energy advocate for patient engagement and full access to medical records, at the Veterans Administration and OHSU (Oregon Health Sciences University). The VA is one of the largest health systems with a personal health record, and they’re improving it every year. Sue’s blog is, fittingly, Shared Health Data. When I saw her post this weekend, I thought “This is how to introduce her. This exemplifies what she’s about.” See her bio on her blog.

Patient-Physician Communication: There’s So Much More To Do

A recent Commentary in JAMA, Patient-Physican Communication: It’s About Time, by Wendy Levinson, MD, and Philip A. Pizzo, MD, is a critical call for physicians to be taught how to talk to and engage patients. It may seem silly that promonent academic leaders need to say this even now, but it still rings true. In our current fragmented care, where provider time is at an all time low, it’s ever more important.

Just last week I worked with a resident who was clearly irritated by a patient. “He’s basically a healthy guy” he said, “but he brings in pharmaceutical ads, and he underlines all these words…..and it takes so long to go over everything and some of these aren’t that important.” Not lost on the huge teaching moment here, I thought carefully about how to persuade the resident that this engaged, activated patient is the goal in healthcare, and that listening to the patient’s concerns would not only help the patient-physician relationship, it would improve patient satisfaction and lead to better outcomes. I tried not to dwell on the lost opportunity to model the ideal conversation, or videotape resident encounters so as to offer feedback. So I talked about how important it is for providers to encourage patients to ask lots of questions, and said patients searching online (or offline) for answers is great, and that it’s OK to just reasure or re-direct. With residents needing “the evidence”, I assured him that research on this was ample.

Back to the JAMA commentary. Wendy Levinson is a favorite role model of mine, a fantastic researcher and leader in medicine. Years ago I had the privilege of practicing general internal medicine alongside her at Legacy Health Systems in Portland, Oregon. A key influence in my decision to head to Seattle for a research fellowship, Wendy left Legacy (Portland’s loss) and is now Chief of Medicine at the University of Toronto. She is a force in medical education, driving for better physician-patient communication. Her research, The Relationship With Malpractice Claims Among Primary Care Physicians and Surgeons, found fewer malpractice claims among primary care doctors who encouraged patients to talk, had more humor and spent a bit more time in visits. Her work is legendary, quoted by Malcom Gladwell in his book “Blink”.

Wendy’s Commentary is so important, I’ve excerpted some here:

Effective communication with patients takes time. ‘Active listening,” a core skill in effective communication, requires that physicians listen deeply to patients telling the stories of their illness and how it has affected them. Most physicians in clinical practice, as well as faculty members in academic medical centers, express a desire to spend more time with patients, but acknowledge that they are under intense pressure to be productive, measured in numbers of patients observed in units of time. Perverse incentives have contributed to physicians developing “efficient styles” that squeeze out time to listen because it is perceived to take too much time. Frequent handoffs in transitions of care, increasingly common today, make time to connect with patients even more challenging. Second, medical schools and residency programs provide relatively little education about effective communication skills compared with the educational time devoted to teaching science and technology. Furthermore, medical students and residents are rarely observed during their interactions with patients or given specific feedback to improve their communication.

The authors call on policy makers and accrediting bodies to remedy the situation. Here’s a few of their ideas -
- Reward faculty for patient-centered care innovations and science
- Have transparent peer and patient communication skill reporting
- Use validated measures on patient satisfaction
- Increase trainee communication standards, require competence
- Teach advanced communication skills
- Celebrate excellence in communication
- Have reimbursement that incents great communication

This list is critical but insufficient to achieve true Participatory Medicine. There is another key ingredient. Patients, consumers, family members and informal caregivers must be brought into the design of these changes – even (especially) in academic medicine. We don’t want just patient-centered care, we want patient-centered design. Organizations such as the Society for Participatory Medicine should position themselves to help academics and healthcare build a better design…and make sure we get to the right place – finally.

You, the patient, are a vital component of medical decision making. Believe it or not, it’s worth your effort to find out about your treatment options! This informal FlipCam vignette models a physician encouraging the patient to ask: “Don’t you want to know??” Cast: Pat Mastors as the empowering physician, and e-Patient Dave pretending to be passive. :-)

Watch:

At last December’s IHI Forum (Institute for Healthcare Improvement), through the generous support of the Cautious Patient Foundation, fifty patient advocates were brought together to participate in every session.  Numerous SPM members were there – Regina Holliday, Trisha Torrey, and others I apologize for not remembering right now.

One was Pat Mastors, a former New England broadcast professional and creator of the Patient Pod, which she created after the incredibly difficult experience (all too common) of watching her father die from a hospital-acquired infection. (Story) Like so many advocates, Pat has responded to her tragedy by applying her professional skills to improving healthcare.

With her TV background she had an idea for a PSA (public service announcement) to encourage people to be engaged in medical decision making – to ask questions. I said “Hey, let’s pull out my FlipCam and do a draft. Maybe somebody will grab it and do a ‘real’ version.” She was hesitant, professional that she is, but I talked her into it. :–)

Immense thanks to Cautious Patient, and to IHI for having the vision to realize that patients should be – must be - engaged in conversations to improve healthcare. Not all events do this – for instance, at the upcoming Medicine 2.0 conference, there’s only a single patient speaking. Patients are the most underutilized resource in healthcare – Let Patients Help!

And, ladies and gents, that starts with you, the patient. Ask your doctor questions – including when you’re presented with just one option, with no discussion of risks and alternatives. Ask.

For more on questions, see Questions Are The Answer, a great website from AHRQ (the Agency for Healthcare Research and Quality), with vignettes like “You ask your waiter about the side dish, but you don’t ask your doctor about side effects. Questions are the answer.” See AHRQ question PSAs here.