See the S4PM comment letter.

While the amendments required in order to make these changes are small, surgical edits, final action and implementation of this rule could take up to a year or more.

During my illness I heard from a long-ago co-worker. A cancer patient herself now, she recently wrote that while sitting in the chair getting chemo, she found this splendid and empowering tidbit :

What I think I learned is, you’re either 100 percent alive or 100 percent dead at any given moment,” says Meg Gaines, whom doctors gave a 5 percent chance of surviving [ovarian cancer]. “What statistics tell you is whether you’re in a great big fight, a medium-sized fight, or a little fight. People win and lose all three, so it just tells you what your fighting mind-set is.

“It tells you what level of risk you’ll take in treatment. It informs things. But I don’t think it’s very helpful on the ultimate question: Will I stay or will I go?”

Excerpted in Utne magazine, March-April 2010, pp. 71-73, from On Wisconsin (Winter 2009), www.uwalumni.com/onwisconsin.

“The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery.

“A division of Partners HealthCare, the Center for Connected Health works with Harvard Medical School-affiliated teaching hospitals, including Massachusetts General and Brigham and Women’s Hospitals.  I am also active in my specialty of Dermatology both as a clinician and educator.”

Dr. Kvedar is also on the Editorial Board of the Journal of Participatory Medicine.

His new blog, about connected health, is The cHealth Blog. Mazel tov!

Thanks to all of you who submitted comments on this week’s post, offering feedback. Here is the PDF I submitted today, which is being distributed to all members of the Meaningful Use workgroup.

Full text of original comments received here by the deadline were included in Appendix A, along with a link to that post so interested readers can see subsequent discussion and any later comments. Keep ‘em coming!

Want to know how cool this community is? We had several times more responses on this subject than were received by the similar post on The Healthcare Blog – and none of theirs had actual feedback! (Just the usual THCB kvetching.:–))

More importantly, consider how vital this work is. To quote from Matthew Holt’s post over there:

It goes without saying, but I’m going to say it again anyway, that Josh [Seidman]’s shepherding of the meaningful use criteria plus his earlier lobbying of the process from the outside HHS was very instrumental in making the consumer such a big part of phase 1 of the meaningful use criteria. However, you can be assured that there are lots of people wanting to put the brakes on any expansion of the consumer-facing meaningful use criteria.

You hear that? People wanting to stop our involvement?  If we want healthcare to become more patient-centric we must stop them, whoever they are!

Yet only two people added feedback on the government’s blog. That’s bad news!

So thank you for participating here. I’m proud that when the government finally starts asking, we here are speaking up. That’s the Society for Participatory Medicine.

In light of that, if you want to add more hollering, speak up and I’ll take your words with me.

When was the last time the government explicitly asked you while the rules were being made? Some of us are hardened and just get cynical afterward. Now’s your chance.

Thank you for participating.

Now that he’s become an MD and is teaching, he’s taking it to the next step, inviting e-patients to talk directly to his students via YouTube. He posted an invitation on his site, and he welcomes cross-posting it here and elsewhere.  Upload to YouTube, tagged with “med20course.”  (That’s a zero after the 2.)

Here’s famed SixUntilMe diabetes blogger Kerri Sparling’s contribution. It’s got almost 800 views already.

Some conversations are easier than others

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important. To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:

1) On a scale of 1 to 5, where do you fall on this continuum? 1 = Let me enjoy the holiday season in glorious solitude — just me, a mug of hot cocoa, and a good movie. 5 = Bring it on — the in-laws, the misbehaved children, and the mountains of dirty dishes!

(Continue reading…)

• Patients do keep their own medical records
• They want access to everything in their record
• Privacy worries “appeared to fade rapidly in the face of the desire to have records fully available in emergency settings and with multiple and new providers”
• “health professionals professed far more concern about maintaining privacy than patients.”
• They understand that their clinicians are busy/stressed, they want the information to supplement and make their (clinicians) work more efficient, not less

Boy do I wish we’d all known about this during the debates about meaningful use and medical records this summer! There was so much talk about “Well what do people want?” and “Won’t patients be overwhelmed? They won’t be able to understand it.”

And here’s the thing: it was published back in May, and the research was done THREE YEARS AGO, Nov. 2006 to Jan. 2007.

How’s that for a great example of the “lethal lag time” we talk about in the e-patient white paper?  That’s the delay between when new knowledge comes into existence and when it’s made its way through the publication system, for use by decision-makers. Three years, in this case.

Thanks to the always magnificent, e-patient-minded Ted Eytan, MD for highlighting this study on his blog Friday.

The “DocPatient” blog, by Dr. Louis Cornacchia of Doctations, has quite a tagline:

Internet healthcare is inevitable. Done right, it can initiate enormously positive change in the U.S. healthcare system. The only way for it to be done right is for doctors and patients to work together to make it happen.

Sounds like participatory medicine to me!

And my Google Alert just popped up a post he wrote shortly after the conference: “Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism.” Even I wouldn’t put it that strongly, but then I’m not an MD – and I’ve certainly never been through medical training, about which he says:

Every day, medical schools indoctrinate upcoming doctors with paternalistic behaviors. “Your patients don’t want to know the details, they want to get well, its your responsibility to make them well.” “You, doctor, should shoulder the responsibility.”

About paternalism itself, he continues: 

Paternalism … is the most critical problem underlying the healthcare crisis. Until we eradicate paternalistic behavior and form balanced, collaborative relationships with our patients, no federal or state regulations will be effective in improving quality or reducing costs. It takes two to do healthcare, and it takes mutual respect and recognition of the patient as a “partner” to do it right.

If you’re not familiar with what paternalism looks like, in healthcare, read his entire post. (It’s not long, and it’s clear.)

I was exposed to paternalistic doctors early in my adulthood, and I elected to leave them; I’ve always wanted to be listened to, respected, empowered and enabled in any professional relationship. So it’s felt odd to hear recently from so many people that paternalism is still so widespread. But I guess it is, and any patient who wants to wise up should be able to recognize it. Read the post for examples of what it looks like on the hoof – including a rather chilling example of how his wife was treated during chemo.

Dr. Cornacchia’s company (Doctations) offers a doctor-patient practice management system, so I suppose someone could say his words are colored by commercial interest. I think it’s the other way around: he saw the future and made a system to match:

The argument about which takes primacy—physician beneficence or patient autonomy—is over. It is now clear that “the right of the patient to act autonomously always outweighs obligations of beneficence toward the autonomous patient.” … The path to better healthcare starts here.

The author is Amy Romano @MidwifeAmy, a nurse-midwife and advocate for mother-friendly maternity care. An expert in research analysis, she manages the Science & Sensibility blog for Lamaze International.

Amy found us through social media, pure and simple: she was out there doin’ her job, chasing interesting chains of followers, and ended up here. She read the white paper and immediately saw that it’s a perfect fit for what she’s up to. Look: social media brought together a growing idea and a constituency that’s ready for it.

Running with the ball herself, she’s now written perhaps the most profoundly innovative post I’ve seen since I first discovered the e-patient movement: she observed that almost everything in the e-patient white paper is about disease. And as the Lamaze people are well aware, a whole lot of healthcare goes on in (what should be) the non-pathological area of maternity and birthing. And those moms-to-be just happen to be in the actively-engaged online demographic: a perfect setup for participating e-patients.

Hold onto your hats, folks. This is a good one. :–)

Update: Amy’s post is here.

In this case, the doctor picked up one of our classic posts, the Seven Preliminary Conclusions from the e-patient white paper, which was written before I’d ever heard the word “e-patient.” As we approach the October launch of the Journal of Participatory Medicine, I re-read that post and found renewed meaning. Here it is.

The e-patient white paper:
 
Seven Preliminary Conclusions

Originally published January 27, 2009

One year ago today I finished reading e-Patients: How they can help us heal healthcare, the e-patient white paper. It turned my head around because although I’d experienced excellent care in almost all ways, it showed that I as a patient have far more to contribute than I ever would have imagined.

The people who assembled that report (not me) are smart, perceptive, and insightful about the future. When I “synopsized” each chapter in posts on my own blog last summer, here’s what I wrote about chapter 2.

This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.

Remember, I didn’t read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, “How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!” So here we are.

From the introduction:

“John Seely Brown… notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm … We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view… But as Brown discovered, ‘Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.’ ”

The authors – mostly doctors, remember – said “Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before.”

See what I mean about how this had strong echos for me? They continue:

… many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.

Presenting their findings, they said “We modestly suggest that the tentative conclusions below are no more ‘anti-doctor’ or ‘anti-medicine’ than the conclusions of Copernicus and Galileo were ‘anti-astronomer.’ ” The preliminary conclusions:

1. e-patients have become valuable contributors, and providers should recognize them as such.
“When clinicians acknowledge and support their patients’ role in self-management … they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care.”

2. The art of empowering patients is trickier than we thought.
“We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects.”

3. We have underestimated patients’ ability to provide useful online resources.
Fabulous story of the “best of the best” web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!

4. We have overestimated the hazards of imperfect online health information.
This one’s an eye-opener: in four years of looking for “death by googling,” even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.

• “[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually” … [and other researchers suggest more than twice as many]
• We can only conclude, tentatively, that adopting the traditional passive patient role … may be considerably more dangerous than attempting to learn about one’s medical condition on the Internet.” (emphasis added)

5. Whenever possible, healthcare should take place on the patient’s turf. (Don’t create a new platform they have to visit – take yourself wherever they’re already meeting online.)

6. Clinicians can no longer go it alone.

• Another eye-popper: “Over the past century, medical information has increased exponentially … but the capacity of the human brain has not. As Donald Lindberg, director of the National Library of Medicine, explains ‘If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
• In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift – same for your interest in “participatory medicine.”

7. The most effective way to improve healthcare is to make it more collaborative.
“We cannot simply replace the old physician-centered model with a new patient-centered model… We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this.”

Great stuff! An awakening for all players in the “ecosystem,” as we say in the business world: patients, providers, equipment developers, everyone.

Wake up to the new world of participatory medicine: equip, enable and empower patient participation.

______

You can join the Society for Participatory Medicine. It’s only $30 for individuals, with scholarships available on request for people in hardship, and there are four levels of organization membership.

This is a tiny item, which we might normally put in our “Found On The Net” sidebar. But this is a big one, and a sign of things to come.

We missed it at the time, but Vince Kuraitis’s must-read blog related in March that a year ago…

Frustrated after an overnight stay in the ER which she said yielded “little treatment”, she requested a copy of her aunt’s medical records before leaving. When she was told that it was hospital policy to request records “in writing”, Dorothy escalated her requests for the records. Refusing to leave without the records, she was brought to the floor by security guards and arrested on charges of criminal trespassing….

Vince relates how today’s HIPAA regulations, written in the stone age (relatively), says providers must give you your records, but they can take a month to do it. (And if they want, they can say that’s not enough and take another month.) When someone needs care, that’s not enough.

Significantly, last Friday the Health Data Rights movement gained its 1,000th endorsement. A movement has started. Add your name!

Now, I know from business, if you offer something your intended users don’t like, guess what happens? Flopzilla.

(I say this strictly from a business perspective; I have never seen, much less touched, an EMR system.)

So here’s the question for doctors considering whether to get an EMR system:

If it were FREE would you take it?

If the answer is no, then I have a front-page WSJ prediction about how effective the stimulus incentives will be.

Please go read the comments over there.

For more info on data formats see our post on data vocabularies.

Here are some highlights of CPeH’s view. Meaningful use is when:

• Care is comprehensive, coordinated, personalized and planned
• Patients and their caregivers are full partners in their care, assisted with management of chronic illnesses and health care decision making
• Transitions between settings of care are smooth, safe, effective and efficient
• Patients can get care when and where they need it
• Patients’ experience of care is routinely assessed and improved
• Care is connected to and integrates community resources
• Continuous quality improvement and the elimination of disparities are a top priority

Don’t you love it? Wouldn’t you love to have that be LAW??

If you’re into this stuff, please read the rest of Josh’s post. More important info on CPeH and on Markle. Good contribution.

For those of us who believe the time has come for participatory medicine, the following quote is particularly interesting:

Empowering patients should be the first step in transforming American healthcare. The central question that policy makers should be asking is if we are missing something by leaving patients out of the current discussion. From our perspective we’re missing an important opportunity to engage patients, set a new standard for personal responsibility, and provide with them with the tools to make better decisions. Perhaps more importantly, a provider-centered approach to health information technology reflects an antiquated model of medical care where full responsibility for a patient’s health is placed on providers. For patients like … this is simply not enough. [Emphasis Added]

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?

No doubt about it, I am an e-patient. There are no handy-dandy pamphlets lying about a doctor’s office about my condition, Common Variable Immunodeficiency (CVID); it’s not well-known or fully understood. I rely on the internet to help me stay informed about my care. Not all physicians are receptive to patients doing their own research. One explained to me that he had spent years developing his skills as a diagnostician, only to have patients come in and tell him what they had before he even had a chance to examine them. So there’s a fine line between being an educated self-advocate and being the person who shuts down a relationship with another human who just may know what you need.

I depend on research and information gleaned through the internet: through NIH, through the US’s Immune Deficiency Foundation and the UK’s Primary Immunodeficiency Foundation; through pharmaceutical company sites; and even through individual blogs. I have learned the pros and cons of delivery methods for my gammaglobulin therapy; I have learned more about related autoimmune concerns. In return, I share a bit about my experience with CVID on my blog, as it may one day help someone out there who is struggling to come to grips with the diagnosis.

Additionally, when you receive a whopper of a diagnosis, you have to contemplate your existence within the world of health insurance. You now have a pre-existing condition, and if you lose your health insurance and don’t get picked up somewhere else after a certain period of time, you probably won’t get insured again, a devastating blow to anyone who relies on therapies which are otherwise unaffordable. Thanks to the internet, I was able to speedily discover the laws in my state about health coverage.

2) Were you always this engaged in your health care, or did your CVID diagnosis trigger it?

I have always been a researcher. As a mom, I have used those skills to investigate my children’s health issues online. But what kicked my internet health research efforts into high gear for me was an autoimmune condition, Idiopathic thrombocytopenic purpura (ITP), which landed me in the hospital for two weeks and which, I have since learned, is a common predecessor for CVID. One day I had platelets; the next day, I didn’t. And no one knew why. But I helped to put all the pieces together: family history (a member of my family has CVID), my own health history, and internet research. Although one doctor told me that he believed it highly unlikely for two family members to both have CVID, my internet research, coupled with my personal data, proved otherwise. Two immunologists later, I have been diagnosed, am in treatment, and am feeling better than I have in awhile!

3) In a previous stage of life you managed a prominent think tank’s website – how have you applied those skills and experiences to your current work? Was there anything else in your background that may have prepared you for what you are dealing with now?

I received a masters in Public Policy/Political Science from a program that emphasized operationalizing your strong quantitative and research abilities in real world situations. You were not going to spend your days locked up in the ivory tower of a higher education institution; you were going to go out into the world and make it work. My work experiences in education policy research gave me a solid foundation in analysis and advocacy, which are highly valuable skills when applied to health issues. For one thing, you have to be a very discerning consumer of the research on the web. You’ve got to know which sources are reliable and which are not, as erroneous information can sometimes be life-threatening. Some sites can tout data, saying something absurd like: “100% of the people surveyed said aloe juice is a wonder elixir.” When you find out 100% means one person interviewed out of a total pool of one person, well, that 100% doesn’t mean much, does it.

And once you know what you’ve got, you have to be your best advocate. For the past two years, I feel like I have become a professional patient. Because people with CVID are at higher risk for lymphoma, stomach cancer, lung and other issues, I must visit several different doctors each year and get scanned frequently. (I probably glow in the dark.) There was a time when I was a much more trusting patient. After being patronized and marginalized one too many times, I don’t accept that anymore: not for myself, and certainly not for my family. I am grateful for the doctors I have found who I feel are true partners in my continued health. And I will remain an advocate for my family’s health.

About 14 years ago, I moved away from policy work and started out life doing technical and content work on the internet. I still remember when my then-company was developing a site for health information, a place for people to meet others like themselves. I don’t think that site still exists, but I’ve never forgotten a lesson I learned from that and other sites I helped to develop and manage: community is powerful. You may not know people in your town or city who have your condition. And maybe you prefer a level of anonymity because of your condition. On the internet, you can find people who struggle as you do, and you don’t even have to tell them your real name. And the support is strong. I have seen people develop very real, long-term relationships with others, whether they are pregnant women who are all due to give birth during the same month or people battling cancer.

And reaching out via the internet is now an ingrained habit in our world. Even while managing a think-tank website, I had a lot of emails from strangers, strangers reaching out. They had read our research on health issues, or justice issues, or something else, and could I direct them to a place where they could find people who could help them? Like I said before, community is powerful, and there are a lot of people who are looking for their place to fit in and heal whatever ails them.

4) Was there a lightbulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of your family?

As I mentioned before, my lightbulb moment came while I was healing from the ITP hospitalization. The medical people I knew were mystified as to why this would happen (hence why it is called an idiopathic condition.) Something in me just knew that it had to do with CVID: it just seemed like this was how it played out with my other family member; and my ITP didn’t respond much to steroids, but it did respond to IVIg, also known as gammaglobulin, the blood product used to treat CVID. So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up with related autoimmune issues, particularly ITP. Suddenly, it all made sense to me. After blood tests and scans were completed with two immunologists, voila! I had a diagnosis.

While there’s nothing happy about being diagnosed with something like CVID, there is a certain sense of relief you feel when you know what is happening to your body. Would I have figured this out without the internet? Certainly not as speedily as I did.

(If you liked this interview, check out the interviews of the Stirrup Queen and Amy Tenderich.)