“I agree all the way I cannot get MY records unless I pay for MY records $1.00 per page WHY WHY these are MINE???????????”

Indeed, why? Whose data is it, anyway?

This spring I’ve been learning (slowly) about HIPAA - the immense and complex 1996 Health Information Portability and Accountability act - it’s become increasingly obvious that the law’s intent has just plain gone sour.

I’ve talked to people who were involved in creating it, and they say it just wasn’t supposed to turn out this way. But the way things have unfolded, your right to your data has gotten crushed under regulations that put unresponsive, unconcerned, unmotivated bureaucrats’ needs above your urgent medical needs.

No matter how desperate you might be, they don’t have to give you your data any faster than one month, and if they want, they can take a second month. And they can charge you whatever they want, subject to state laws.

In Regina Holliday’s case, it was 73 cents a page. In Judy’s case, it’s a dollar a page. In Texas, it can be $37 for the first ten pages. And so on.

I think this is revolting, and we should revolt. The law has been perverted, and it stands in the way of empowered patients trying to help their own cause. (And when I say “patients” I always mean caregivers, too. Patients’ rights to self-preservation certainly accrue to the ones trying to provide their care.)

As patient or caregiver, your time will come. It takes years for this industry to budge an inch, so you better speak up now. Add your endorsement to the Health Data Bill of Rights: click here.

Diagnosis: Revolting. Prescription: Revolt.

What is the risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?

Discussions about the reform of the system are clearly no longer directed to improve care, outcomes and  patient experience. On the contrary conversations have become almost exclusively about lowered costs. It is as though most of the people involved in thinking about the reform really don’t want to remember that medicine (the topic central to health care reform) is all about you and me, the current and future patients, not about saving an array of professionals whose income has become totally dependent on the accumulated and constantly growing dysfunctions of the system.

Health care reform should start with simply accepting that all human beings have the right to be treated as human beings, in sickness just as much as in health. As long as our bodies remain the best income proxies for millions of Americans whose business depends on extracting as much value from sickness as possible we will have a nasty case of Goodhart’s law and real reform will remain impossible.

Pay attention to how the politicos and the media are churning news, almost non-stop, about how much the reform will cost. Will it be $1 trillion, $1.6 trillion or $3.7 trillion? Ask the average person and they’ll almost certainly look at you with eyes filled with fear and guilt, because everybody knows something must be done but frankly, the more we hear about it the more we experience that it’s just too overwhelming.  We have been spoon fed sophisticated lies for too long. Because we have been used as the proxy source of income for all the participants of Opaque, Inc we have never been told:

• what is the real cost of care for each one of us and,
• how we have been brainwashed to believe that so called unlimited medical choices always result in better outcome.

Attacked by soundbites that include one of the huge numbers, we become paralyzed and unable to start questioning any of the statements made by each of the defenders of the established order, as well all the statements made by politicians who are almost always motivated by undeclared biases.

But when the dust settles, we will be left with one simple question. Are we getting better care than before? My theory is that you cannot reform the health care system as long as you fixate on the system. It is too broken and too dysfunctional for multiple reasons as noted by countless experts. But almost none of these experts live and breathe what the people in this blog are experiencing daily.

Health care is not about money, it is about care. It is not about RBRVS, it is about helping the patients having to make complex decisions about pros and cons of various treatment options. It is not about private insurance vs public plan, it should be about health and wellness. It is not about unnecessary procedures, it is about ending the paternalistic model of medicine. Truly empower the patients and they’ll be able to see through many of the dysfunctions and will force changes faster than any mandated reform.

A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, you will have quick and easy (and free) access to your health data?

Ummm, not necessarily.

It may seem like a no-brainer, but we need to make sure President Obama knows that we – as patients, future patients, caregivers, citizens, and taxpayers – really care about having access to our health information. On Wednesday, July 1, 2009, Obama will be holding an online town hall meeting on health care reform to answer some common questions. People can submit questions via Facebook, YouTube, and Twitter (twitter hashtag: #WHHCQ)

President Obama will answer common questions. If enough of us ask, maybe we will get a verbal commitment from Obama to support our health data rights.

Here are a couple of twitter examples:

Obama, will #hcreform support my right to access and use #myhealthdata ? #WHHCQ

Hi Prez Obama! Will #hcreform support humans’ access to their own health data, kinda like how they access their pet’s data? #WHHCQ

The newly drafted Declaration of Health Data Rights, created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs (in some cases, all attributes in the same person), states that its assertions are self-evident, basic, essential. The right to have information about oneself? – why the fuss? – this is America after all! Yet the practical and psychological impediments are so immense, and the impact on an individual’s failing health and the country’s economic troubles so potentially redemptive, we get why it’s so important to start spreading the news/ make a brand new start of it.

Much has been explained in the declaration’s FAQs, in the 30+ blog posts (see Gilles’ below, and e-Patient Dave’s here), and very succinctly in hundreds of tweets.

Here’s why I find this strikingly timely (and why I helped draft the document): I’ve been fortunate to work the past two years with a group of friends and colleagues formulating the Journal of Participatory Medicine, slated to launch this fall. We hope to show, through research papers and patient stories, that outcomes improve when people engage in decisions relating to their own health.

The Internet, high-speed connectivity, and the dawn of open-access publishing are innovations that have permitted entrée to the scientific literature by patients and caregivers in recent years. This, coupled with social networking in the form of community forums and support groups, has equipped many citizens with the ability to match or surpass their physicians’ knowledge of particular issues relating to their conditions and ailments. Participatory medicine postulates that combining patients’ commited research with health experts’ years of training and experience, brings a heightened level of critical analysis to the table.

Yet…. yet. For all the talk of the evidence-based approach to medicine, we are beginning to embrace the power of personalized medicine, where an individual’s numbers – be they systolic blood pressure readings or genetic propensity to stroke – may trump the double-blind, placebo-controlled study suggesting antihypertensive drugs are effective for 62% of the study population. Forget the bias of the funding institution, and forget the old-boys’ network of peer review. Assume the study belongs to the evidence canon that usefully informs 5% of physician decision making. It’s quite possibly not that important to me. Am I in the 62% of the population that will be helped by the drug, or the 38% that will not (and may be harmed by it or discomfited by the side effects). The truly enlightened, educated, empowered e-patient will be the one who knows and understands his or her numbers. The power of my data is how it quantifies me and informs my behavior and goals.

What’s exciting is that it’s not just about BMI and what you learn in health class anymore.  Kevin Kelly and Gary Wolf have made it cool with their Quantified Self blog (”Tools for Knowing Your Mind and Body”), and brought it to Wired Magazine as the theme of this July’s issue, Living by Numbers. 

That’s why making it easy for us to know, interpret, and track our numbers over time — based on lab test results, scans, responses to drugs, and anything quantifiable — is going to make medicine smarter, people healthier, and the healthcare system far less costly. And while the focus here is on me, top of the list, king of the hill (yes, I’m from New York New York), I need to depend on the wisdom of crowds to push this agenda. That’s you, so please join the legions and endorse the Declaration at http://www.healthdatarights.org/endorsements, because as obvious and as unalienable as it sounds to have ready and ongoing access to your data, obstacles abound. I’ll let the other bloggers on this subject tell you about that.

For ongoing discussion about why participatory medicine matters, stay tuned to this site, with engaging and disruptive posts written by my colleagues @epatientdave, @gfry, @susannahfox, @docjohng, and others. This is the source and inspiration for our coming journal and society. (And for more on the visionary educator Paulo Freire and his prescription for e-patients, see my earlier post: Participatory Medicine as Revolution! Think Critically! Communicate!)

Disclosure: I was involved in drafting the Declaration and my job with Keas Inc. involves developing content and tools to help people stay healthy.

A recent review in the Annals of Internal Medicine (June 16, 2009) reveals that statin-related muscle problems are far more common than most RCTs report. The connection between acid-suppressing drugs and fractures also went undetected until many years after the drugs were taken by millions. And it took the FDA years to recognize that severe bone, joint and muscle pain was linked to drugs for osteoporosis (Actonel, Boniva, Fosamax, Reclast).

That is why e-patients are essential to an early warning system about drug-induced side effects. A Research Letter in the Archives of Internal Medicine (June 22, 2009) gives the results of a patient survey conducted on the patient site askapatient.com. Over the course of three months, 367 people responded; more than 50 percent reported muscle and joint pain with fatigue associated with bisphosphonate osteoporosis drugs.

That is interesting enough, but the real point of the story lies in the contrast with data collected on a Web site frequented by physicians, sermo.com. One doctor posted a case of joint, bone and muscle pain in an influenza-like syndrome associated with a bisphosphonate. When other site visitors were asked about this reaction, more than half said other clinicians had never seen it.

That’s why patients feel so frustrated when they tell their doctors about a reaction and the doctors say, “It can’t be caused by the drug.” The author concludes, “Web sites such as askapatient provide a window into the patient experience and a potential resource for developing a better understanding of the true adverse effect profile of prescription drugs.”

http://archinte.ama-assn.org/cgi/reprint/169/12/1164

It was a provocative talk, because although “everyone knows” the Obama administration has mastered social media, there’s a real question of whether we out here actually use those blogs. And it had never even occurred to me to go there – I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about conversations, not one-way publishing or one-way reading. I commented that the thing about the administration isn’t just that they publish, it’s that they seem to listen.

Anyway, when Aliya published another piece today, Administration urged to engage public on e-health records, I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:

In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in. The core problem here is that there is no political power center for regular people to glom on to health care reform.”

(Emphasis added.)

Think about that: the only people who will live or die, depending on how reform goes, have no power center in Washington.

It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades!

Craig’s point is “The most visible and active ’stakeholders’ in discussions about HIT so far have been … commercially self-interested players who may not [or, to be fair, may] have patient rights … top-of-mind.”

As I often say, I have nothing against business; I’m in business. But I assert that something is terribly broken if we – the ones who stand to live or die depending on this issue – have no power center to “glom on to.”

Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. Where the hell is the voice of the patient?

Definition: Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable. Similarly, people upload video from their cell phone to YouTube because these individual video streams are computable.

The world in 2009 is very different from anything we have seen before. The connected age has invaded all societies and the possible repercussions are just starting to emerge, driving us into the age of consequences.

In the last 10 days we have witnessed how Twitter and YouTube have become the ultimate enemies of the Iranian leaders who tried to use the classical tools of democracy to hide a dictatorship. Once and for all we know that transparency trumps opacity! The Iranian  government’s tight control of media and the Internet has spawned a generation adept at circumventing communication roadblocks, making the country ripe for a technology–driven protest movement.

The helicopters, the Basajis and all the other tools of mass fear have failed because individuals in Iran have found a way to own and control the data that is important to them at this point. The demonstrators have been using simple text messaging and videos shot from their cell phones to collect, document and transmit the visual data elements that are helping us understand the health of a nation, in real time. Their tweets, use of hashtags and uploaded images have made all of us instant witnesses. In just a few days, they have shown all of us that citizens data rights are the defining rights of our era and that data hugging is no longer possible and will cause the failure of established systems trying to control & limit data flows.

At the same time, much action is taking place in Washington DC about healthcare reform. Not a day passes without the President or a very senior member of the administration mentioning that we, as a Nation, must reform the healthcare system this year or risk a future similar to GM. Pretty grim assessment, if you ask me.

There is a general consensus about the tools that should be used to succeed in this reform. Everybody talks about the Electronic Health Record and the need to create systems that in the end will be interoperable at some level, so that the data flows can be facilitated. The experts are talking about an horizon of at least 6 and maybe 10 years before these systems are implemented and active in most of the US.

I cannot help but be shocked that young students in Tehran have, today, the ability to transmit, freely, in real time and against all odds, instant reports, images & videos (just 3 types of data element), while we, sitting in a country that prides itself to be the most advanced in the world, cannot, in general, have access to any of our health data without delay and at no cost.

I cannot accept any longer, the excuses coming from within the system to explain why I am denied this access. And neither should you!

Too many of the blog posts I have written over the last year document failures of knowledge, science, medical care and recording of all medical events because the patients have never been given, as a matter of fact, access to their health data! e-Patient Dave data transfer story provided the last proof we needed to show that healthcare reform cannot happen as long as the patients are treated as anything else than the most important stakeholder! And healthcare reform in the contemporary world cannot happen until the most important stakeholder has access to his/her health data. Just today an article showed that patients are often not told about abnormal test results.

As a Nation it is time to stand up and call for the universal recognition of our rights to access, whenever we want, a copy of any or all parts of our health data. Read the Declaration and think about it, please! It is written to start a national conversation about a topic that is fundamental and often misunderstood or just unknown. The endorsers come varied horizons, from individuals, not-for-profit organizations and  corporations, large and small. We are all in agreement that these health data rights are basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient.

Please join us in making sure we have all the possibility to improve the healthcare system by taking ownership of our health and of our health data! Endorse these Rights!

Today I proudly join together with a group of leaders across health care working to establish this Declaration of Health Data Rights. The text of the declaration is clear, appropriate and extraordinarily important to us all.

A Declaration of Health Data Rights

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

My wife’s a veterinarian, and we sometimes compare notes. So this headline caught my attention. Excerpt from the article:

Economic Euthanasia On the Rise

Euthanasia can be the last act of love when disease or time has made death a greater comfort than life … But now euthanasia has taken on a new and unsettling meaning for some vets’ clients. Economic euthanasias are occurring at higher frequences in practices where the community has been hit hard by the down economy.

An increase in euthanasia when treatment is medically feasible leaves veterinarians to question how they can remain financially stable while helping clients and patients get what they need.

… [An Ohio emergency clinic says] “The worst part is more clients are taking their pets home to die when they’re in need of treatment.”

Now consider what the insightful, visionary Gilles Frydman wrote here a month ago today: Will the Great Recession Create Millions of e-Patients?

He pointed to a Wall Street Journal Health Blog post saying that nearly half of employers plan to shift more costs to us next year, and 20% of companies will switch to a plan that puts insurance out of the reach of many people. (I’m simplifying; read the post for details.)

Later that day, the Fierce HealthCare newsletter reported (see comment):

Survey of 505 family physicians…. “54% [of respondents] said they were seeing fewer patients since January 2008, and 73% reported seeing more uninsured patients. … 71% reported providing more uncompensated care. … Also saw signs that patients’ health was being directly affected by cost issues.”

Here’s my point, people: the forces of business in the healthcare industry are understandably defending themselves against revenue loss, but IT IS KILLING PEOPLE.

I’m in business myself. I have nothing against revenue, earnings, appreciation, stockholder value.

But this is not baseball, people. This is not car sales. Lives are at stake.

I urge the people who run businesses in this industry to find humanistic ways to accomplish their missions. I know you need to meet your targets. Please, please, do not turn us into targets in the process.

And I urge you [readers], yes all of you, to stand up and raise holy Hell about this. We are not carcasses to be mined for revenue. We are human lives. When healthcare becomes out of our reach, people suffer and die.

What’s happening in veterinary medicine - increasingly putting to sleep animals that could have been saved - parallels what’s happening in human healthcare. And as long as decision-makers prioritize preserving revenue instead of preserving life, the results will match.

You better think about where we’re headed - about what’s going to happen if we don’t rise up and demand that our interests be preserved.

Amen!

Just had an incident where my SS# was attached to a different patient’s name in the electronic med record. And the health facility will not tell me where the error occured, or how long someone else’s name was linked to my ss# and my medical record. Discovered accidentally when the lead attendant called me by the wrong name…. The hospital ethics person states only that they have taken care of it and counseled the individual involved!

Then try reviewing your own EMR. They act like you are neurotic even though the reason is that your record had been mixed up with another person…duh!

Lots of errors/lots of privacy issues.

This is a new comment that appeared Wednesday night on my April 1 post about moving my data from my hospital’s system to Google Health. It’s from Kate Bosch, a Pacific Northwest resident who knew nothing about my story; she ran into her own mess and decided to see what she could learn. Good ol’ Google Blog Search brought her here.

The front page Boston Globe article about my adventure focused on the newly emerging doubts about our data. (Aptly, it was titled Electronic Health Records Raise Doubts.) There are at least two aspects to that doubt.

The article talked about billing data, and how it’s a poor “proxy” (in engineering terms) for clinical reality. (When you can’t find real data for something, it’s sometimes valid to use an available substitute, which is referred to as a proxy.)

But a deeper issue in my original post, much harder to change, is that no system will produce good results by itself: tools must be used properly. Buying a new hedge trimmer won’t guarantee gorgeous hedges, and among all the people you know who own a computer, I bet some get better results than others.

More importantly, when it comes to putting data into a multi-user system, you will not get reliable data unless there are well controlled processes for how data gets into the system. That means teaching people to do things in a particular way. And in an established profession, that usually means changing people’s work habits. And that takes time.

This is not rocket science, and it’s not unique to medicine. When I worked in the newspaper systems business, as that industry computerized, I saw at close range that changing an industry’s work habits can take a full generation. (And I mean a generation of people, not generation of systems.)

Think about that. Because we’re talking about how well others have been managing your medical data. Are you ready to take responsibility?

(Mind you, this doesn’t mean they’re “bad people.” It’s not trivial to design and stick to a good clean process. I know; I do that stuff in my day job. My point isn’t that the people are evil or anything, it’s that we are misguided if we assume our data is probably correct; we should check it out. Another set of eyes never hurts, eh?)

In my original post I wrote “I suspect processes for data integrity in healthcare are largely absent, by ordinary business standards.” This suspicion was validated by the Information Quality Trainwrecks blog, a blog where data professionals talk about how to avoid such things. Reviewing the story, they said “problems that have been documented in the information quality literature for over a decade are at the root of an embarassing information quality trainwreck.”

What to do? You and I must take control of our own data, because the industry may take twenty years to get there. Kate nailed it in a subsequent email:

the deeper I question, the more of a mess it seems…In my estimation the EMR will only work if patients have full access to ALL their EMR and can catch mistakes as they happen. Also security and access should ideally rest with the patients wishes not the medical or  insurance facility…

A complete turnaround in medical staff thinking  will be necessary though & I don’t think this will come easily  judging on my own experience & how I was treated when I requested to review the EMR’s (something they claimed no-one had ever asked to do before).

Welcome, Kate. Have a seat - we got work to do.

In my view, it would be a bad mistake for the advocates of health 2.0 approaches to consider it an “either/or” proposition.  Rather, with the help of alliances with traditional medical providers, we can forge a brave, better new world of empowered, informed, e-patients.

Thanks, Tom Davenport, for singing our song.  In my view this is Participatory Medicine at its best: an equal partnership with patients and providers, with patients accepting responsibility for their health, but also relying on medical providers to provide quality health care services, each helping the other in ways for which they are uniquely qualified.  This is the health care system that I envision for the future!

The transcript of the commencement address is definitely worth reading because it is another powerful call for structural changes. But it has one particular advantage for me. I learned of the Positive Deviants, a concept that has been in existence since the 80’s. This concept can explain what I have witnessed with ACOR for 14 years.

Because Positive Deviants derive their extraordinary capabilities from the identical environmental conditions as those around them, but are not constrained by conventional wisdoms, Positive Deviants standards for attitudes, thinking and behavior are readily accepted as the foundation for profound organizational and cultural change.

That is definitely how you would describe every one of the most active patient advocates you find on Twitter. Most of them have created large followings because they demonstrate an exceptional ability to think outside the box and create solutions to their particular problems.

I believe that we have not been attentive enough to the many positive deviants out there, who probably stand by the thousands, if not more, and that have found on their own, a personal solution to their main healthcare problems.

The strong reaction to Kevin Kelly’s Quantified Self blog post about the Journal of Participatory Medicine is a clear indication that, as the system is breaking down a little bit more every day, people have found many adaptative solutions that have never been catalogued, let alone studied. Note that studies about Positive Deviants consistently show that the single most important element in their patterned behavior is their passionate commitment expressed through their mental model. However, they don’t usually know they have a mental model and it is difficult for the new person to grasp the model because it is both unconscious and defined using highly abstract thinking. That sounds remarkably like all the e-Patients I have met!

As we build the Society for Participatory Medicine, it is my hope that we will embrace all the deviants, as long as they are of the positive type!

…a quick scan through peer-reviewed journals reveals only a handful of articles, and no evidence-based guidelines, to guide doctors on the use of social media. It is unclear whether such engagement adds to or detracts from a therapeutic patient-doctor relationship, and clinicians are unsure about what constitutes good standards of care and professional responsibility on these platforms.

More physicians and hospital are using, or thinking about using, social media, such as Dr. Sean Khozin of Hello Health, a system that mixes office and online visits. He’s quoted in the Times article as saying “there are so many layers of bureaucracy between health care providers and patients.”

We can use social media to coordinate care with patients and with different specialists, all using the same platform. I can monitor my patients, and they can also use these tools to become empowered through a better understanding of their own disease state and active engagement.

Our own Danny Sands is quoted on the down side of social media for patient communication. “Maybe letting your patient get too close isn’t always good for the therapeutic relationship,” he says, and he goes on to note that busy physicians are not eager to add the new time commitments social media would entail without a clearer idea of the value. The highest-value healthcare application of social media may be in supporting patient communities, where, Sands says, “we can aggregate across space and across the world and create a safe environment for support.” He calls referral to a patient community like the Association of Cancer Online Resources an “information prescription.”

We spent a bundle of money on making this a random sample of the U.S. population, but guess who got a call on his cell phone? None other than e-patient Dave! He had never talked with me about the survey questions or reviewed a draft, so I decided to keep his interview in the mix, but he surprised the heck out of the interviewer when he finished the sponsor identification for her at the end.

It’s a long report, so here is a cheat sheet.

Comfort food

This survey once again establishes that 83% of internet users (61% of adults) in the U.S. look online for health information (I call these people “e-patients”). That tracks with every other survey conducted in the last few years – ours and others – so it’s just comfort food for data geeks.

Is Health 2.0 hip or hype?

Hip. There is significant uptake for Health 2.0-type activities online: 59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts. 20% of e-patients have posted comments, reviews, photos, audio, video or tags related to health care. People are tailoring their online information-gathering, targeting “just-in-time someone-like-me” health info and doing some sharing, too, especially young people (18-49 years old) and those with mobile internet access.

Anything in here for Information Therapy fans?

The primary relationships in health care are institutions which, in the words of John Seely Brown and Paul Duguid “will not budge” (hat tip to their book, The Social Life of Information, which was one of Tom Ferguson’s must-reads).

When asked, “Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources…”
• 86% of all adults ask a health professional, such as a doctor.
• 68% of all adults ask a friend or family member.
• 57% of all adults use the internet.
• 54% use books or other printed reference material.
• 33% contact their insurance provider.
• 5% use another source not mentioned in the list.

You read that right: The internet is tied in third place with books! Vive l’impremerie!

The good news: They like you! They really, really like you!

60% of e-patients (42% of all adults) say they or someone they know has been helped by following medical advice or health information found on the internet. That’s up from 2006 when 31% of e-patients (25% of all adults) said that. Just 3% of e-patients say they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006.

The bad news: We don’t have full participation

Only 25% of adults with less than a high school education go online for health information, compared with 50% of high school grads, and 85% of college grads. 27% of adults age 65+ are e-patients, compared with 59% of adults age 50-64, and about seven in ten adults age 18-49. 44% of Latino adults go online for health information, compared with 51% of African Americans and 65% of whites.

Further, two-thirds of e-patients ages 18-49 have done at least one of the Health 2.0-type activities listed, compared with one-half of e-patients age 50 and older. There are no significant differences when it comes to education – those with less education who engage in any health activity are just as likely as other e-patient to post and read comments, reviews, etc. Same goes for race and ethnicity.

Shout-outs to special interests

Mobile health fans: You’re the big winner here. We did statistical regressions and indeed mobile access is a significant, independent factor in health social media participation.

Facebook/MySpace/Twitter fans: You’re the big loser in this survey. There is very little evidence that social networks have become e-patient hang-outs. Health orgs may want to spend their resources elsewhere for now: just 6% of e-patients who use social network sites started or joined a health-related group.

Health publishers: The market for comments, ratings, and tags is ripening. If you’re not opening up to user-generated input, start thinking about it. Your audience is waiting.

Health professionals: Judgment Day is approaching and only a tiny slice of your patients are on the review committee. 35% of adults have looked online for information about doctors or other health professionals and, of those, one-third have consulted online rankings or reviews and only 7% of that group has posted a review!

Hospital administrators: 28% of adults go online in search of information about hospitals or medical facilities and, of those, 45% have consulted online rankings or reviews and only 9% of that group has posted a review.

VCs: There is steady and increasing interest in health: flip to the back to see which topics are hot, like fitness info which saw an an 88% growth since ‘02, a more rapid increase than any other health topic covered in the survey. But know this: few people do this stuff every day or even every week.

Pharma: 33% of adults have looked online for information about prescription or OTC drugs. What’s interesting is that people who look up drug info are not likely to also look at alternative or experimental treatments – your customers are pretty focused.

E-patients and caregivers: Contribute! People are listening.

The first signs that something was wrong with 11-year-old Connor Teare came when he was a toddler. His muscles were growing increasingly rigid and becoming more difficult to move.

He went from leg braces to a walker and, finally, a wheelchair by the time he was 5.”

Connor’s mother “spent months scouring the Internet for answers and, finally, came across an exceptionally rare disorder she thought might explain Connor’s condition.” Although he lacked some classic symptoms, soon Connor responded to the treatment. He’s now in school.

Annoyingly, the video on ABCNews.com doesn’t provide “embed code” so I can’t show it here. But the article with video is here.

Charles Gibson ends with the line “Moms, do not give up.” Dads too – in fact what the hell, let’s just go nuts and say “E-patients to the fore. Patients can help.”

“· On or after January 1, 2011, no person or entity is permitted to sell, offer for sale, give, furnish, or otherwise distribute to any person or entity in this State a health information technology product that has not been certified by CCHIT. A person or entity that violates this provision is liable to a civil penalty of not less than $1,000 for the first violation, not less than $2,500 for the second violation, and $5,000 for the third and each subsequent violation, to be collected pursuant to the “Penalty Enforcement Law of 1999,” P.L.1999, c.274 (C.2A:58-10 et seq.).

· The bill defines “health information technology product” to mean a system, program, application, or other product that is based upon technology which is used to electronically collect, store, retrieve, and transfer clinical, administrative, and financial health information.”

Based on this definition any electronic transmission of health data must be done through a CCHIT-accredited system. It certainly does not exclude tethered or untethered PHRs. Since CCHIT has not even started looking into the certification of PHRs in general it is highly doubtful it would be able to succeed in their accreditation by 2011. And so, will every NJ user of HealthVault, Google Health or Dossia incur a $5,000 fine? Interesting question.

Of course the bigger issue is the play by a NJ state assemblyman who is trying to create a state monopoly for CCHIT, an organization that has a very serious image problem (see my previous post).

We should always consider the law of unintended consequences and this rather scary effort in a single state has the great advantage of helping us consider what would happen, if indeed CCHIT became the monopolistic entity it is trying so hard to be.

The proposed law, Assembly #3934 of the 213th Legislature, is sponsored by Assemblyman Herb Conaway, Jr. Dr. Conaway, a practicing physician who has been very active as a state politician, sponsoring multiple HIT-related legislation. He:

• is chair of his state assembly  Health and Senior Services Committee.
• testified in the US Congress, on behalf of the National Conference of State Legislatures (NCSL), where he served that year as chair of the Standing Committee on Health.
• is also a member of the National Governors Association’s State Alliance for e-Health.

In short Dr. Conaway is, at a state level, a real powerhouse! And since medicine is licensed, in the US, at a state level, any new law about EHR introduced in a single state, can easily be replicated in other states, creating the de-facto monopoly that CCHIT is trying to achieve via multiple directions.

Now let’s go back to the thorniest issue about CCHIT. To this day Mark Leavitt, Chair of CCHIT refuses to address quietly and with civility the hard question about the deep connection between the non-profit organization he runs and HIMSS, the vendor-sponsored professional organization where he was CMO before chairing CCHIT. To repeat what has been said many times, including by David Kibbe MD,

“One has to question whether or not a vendor-founded, -funded and -driven organization should have the exclusive right to determine what software will be bought by federal taxpayer dollars,”… “It’s important that the people who determine how this money is spent are disinterested and unbiased . . . Even the appearance of a conflict of interest could poison the whole process.

I am not the only one with these concerns. Many other health care and health IT professionals have raised legitimate questions about CCHIT and its practices, its relationship with HIMSS, and yet to date these have not been resolved. A response that attacks me personally and labels me a liar is far from adequate, and so the questions will remain.

The stakes are too high to simply look the other way.

So, let’s look into appearances only. Dr. Conaway has

• written in various HIMSS publications (HIMSS HIWLights, an editorial in HIMSS Advocacy Center )
• speaks at HIMSS sponsored events. In particular, in 2008, he attended “The Healthcare Technology Evolution: Smarter Solutions for Better Patient Care”, a  300 attendees event from the New Jersey and Delaware Valley chapters of HIMSS .
• Dr. Conaway was one of four state legislators who spoke at this year HIMSS conference’s State Officials Forum.
• Dr. Conaway was one of two recipients of the HIMSS State Leadership Award in 2008.

During the 2008 NJ/DE HIMSS Chapter meeting Dr. Conaway said:

Building a national health care network after states have built their own may not be the best solution. What surprises me is that in some states such as Iowa, they are able to exchange data amongst health care providers. There are lots of opinions as to why they are able to exchange data. I think it will be up the states to test policies and build the best solutions that can reach across state lines.

These are all plain facts. You can make up your own mind about the motivations for introducing the new proposed state law.

For me, any state or federal legislation that will try to limit innovation by forcing an artificial monopoly is antipatriotic. The President is calling upon all of us to do our part to help healthcare reform. Dr. Conaway is doing his part to block innovation and to retain the status-quo.

Update: Mark Leavitt, Chair, CCHIT, sent the following answer to an AMIA listserv, in response to questions regarding his opinion about the proposed bill:

My deepest, sincerest thanks to Steve Findlay of Consumers Union, who invited e-patients.net to be on this panel. What a radical idea: have a consumer on a consumer panel! It’s so good to see the skies opening in this way.

The topic was whether “consumer pull” would encourage healthcare providers to adopt electronic medical record systems (EMRs). (Like, if you and I keep asking our doctors and hospitals to let us see our data online, will they be more likely to get off their butts and GET our data online??)

All I can say is, if I have anything to do with it, consumers (that’s you) will be clamoring to see their medical records, both to check their accuracy and for the reason I sent my data to Google Health in the first place: to get involved in their care, to be responsible, to participate.

Go thou into the wilderness and clamor for access!

Here are the slides I used, with a few more added to make it a self-running presentation. Some of the text is small, so take it to full screen:

The panel was videotaped. Here’s my talk. The sequence of slides (for instance the opening “takeaways”) is a little different from the above slides, but the flow is essentially the same.

For reference, here’s the full unedited video of the hour-long testimony including the other speakers. My portion starts at 34:09.
Full video of consumer panel at NeHC board, June 2, 2009

The other panelists were phenomenal; I learned a ton from their expert observations. Some of it was over my head until I listened a couple of times; they have years of experience in these policy discussions.  All I know is, I want us to have access to our own damn data. :–)

By the way, a big thank-you to SlideBoom.com, the free service that converted my slides for posting here, including my animations and slide transitions, which cause fits for most such services. Good tool!

This quote from Hans Rosling is part of a speech where he presented the following:

Database-hugging disorder (Dbhd): A well known ailment, Dbhd is the statisticians’ tendency to guard their data because of concerns about budgets or misinterpretation.

This definition should of course be broadened.  

Data-Hugging Disorder: A well known ailment of the medical professions, DHD is a strong tendency to guard the data collected from the rightful owners (the patients) because of various control issues.

Please join me in calling for a total ban on data-hugging disorder on the part of all the various professionals involved in the healthcare provision chain, including doctors, hospitals, pharmacists, test labs and insurance companies. Your life, or the life of a loved one, may depend on having immediate and full access to ALL your health data.

Gapminder Foundation Director Hans Rosling, modern statistician extraordinaire, gave an important talk at the Princeton’s Woodrow Wilson Center on May 26, 09. Almost everything he said about public health data applies to medical data in general. During his talk, Rosling stressed that access to data must be free, and admonished major International organizations such as the World Bank, the Organisation for Economic Co-operation and Development (OECD), and others for charging any access to their statistics.

These organizations say, ‘No, we can’t give the data to the people because they will make wrong comparisons, and they will make wrong conclusions,’ and I say ‘Yes, we call it freedom.’”

Hans Rosling

Rosling said something similar in a wonderful interview with the BBC.

Funny how this talk by Rosling parallels what we have been saying clamoring about patient data: “Free the data! It is mine and I want to control what I will do with it“. It parallels what Regina Holliday has been vividly saying for a couple of weeks, after being told she would have to pay 73 Cents per page and wait weeks for a copy (see below) of her husband’s paper-based medical record. A medical record that documents their ordeal leading to the late diagnosis of a very advanced case of renal cell carcinoma (kidney cancer).

73 Cents per Page!

Regina, a professional artist has started a series of murals in Washington, DC that are created to raise the awareness of the public about some very hard questions asked in very simple English:

• Why do we have more transparency in special education law then in medical care?
• Why do we have more access to information on a box of Cheerios than on a medical chart?
• Why isn’t there a medical counterpart of the Freedom of Information Act?

As Regina says: “People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.”

Regina and other patient advocates are launching a new advocacy, the “73 Cents” movement. If you are fed up with the system, if you have experienced the pain created by its dysfunctions, you can join Regina in her call: “Now is the time to call your congressman and demand your rights. The law is being made now. Do not be left out.”

Note: Following ePatient Dave advice I changed the title of this post from “e-Patients Do Not Suffer From Database-Hugging Disorder” to the current title

If the future of healthcare is electronic, someone in the IT department needs to ensure the computers providing these services are protected from simple things like electric surges. I think it’s called a “surge protector” and Wal-Mart sells them for $10.

Now sure, this was an isolated incident and the hospital was back up and running a few hours later. But still, it makes one wonder… If we can’t get something as simple as this right, how much luck are we going to have with the future of healthcare in the hands of people who can’t see the forest through the trees. Because no matter how unwieldy paper records are, they are there, even in the worst emergencies possible.

• The Certification Commission for Healthcare Information Technology (CCHIT) is currently in a monopolistic situation since it is, for the last few years, the only entity allowed to certify EHRs.
• The HITECH act of ARRA mentions specifically the requirement to use “certified” EHRs to be able to collect federal money to implement EHR at both doctor offices and hospitals. The next few months Dr. David Blumenthal will have to decide who will be entitled to do these certifications (Dr. Blumenthal is the National Coordinator for Health Information Technology. In his role he is charged with the implementation of HITECH). With at least $20 Bn. at stake, CCHIT will have enormous powers, if it remains a monopoly.
• Questions have been raised over time about the connection between CCHIT and HIMSS, the Health IT professional society, a vendor-sponsored organization.

This week the Healthcare Blog got on fire, thanks to an angry, vitriolic drive-by post from Dr. Mark Leavitt, former Secretary of the DHHS (innacurate) and current chair of CCHIT:

… I’m stunned by the level of dishonesty a few have stooped to in a desperate attempt to toss aside years of work by hundreds of public-spirited contributors.  Perhaps they want to bypass the challenge of supplying robust electronic health records and re-educating clinicians to use them meaningfully in transforming care, and just get unfettered access to some stimulus dough.

For months, I’ve been “turning the other cheek” to Dr. David Kibbe because I believe in devoting my energy to solving problems rather than to criticizing other people or worrying about what others think of me.  But his repeated use of falsehoods and innuendo to attack CCHIT have found an audience in the national media, reaching a level that can no longer be ignored.

David Kibbe, MD, an highly respected expert in EHRs and active supporter of patient-centered medicine responded:

“To clarify what I actually said, after a brief interview, quoted in the second of two articles in the Washington Post by Robert O’Harrow, Jr, a Pulitzer Prize finalist :

“One has to question whether or not a vendor-founded, -funded and -driven organization should have the exclusive right to determine what software will be bought by federal taxpayer dollars. It’s important that the people who determine how this money is spent are disinterested and unbiased . . . Even the appearance of a conflict of interest could poison the whole process.”

Raising questions and concerns like these does not reach the level of “falsehoods and innuendo.”  In my opinion, it is entirely appropriate to ask tough questions about whose interests are being served when $36 Billion of tax payers’ money is involved, and the future of health IT in the U.S. will be the result of certification.”

I am not the only one with these concerns. Many other health care and health IT professionals have raised legitimate questions about CCHIT and its practices, its relationship with HIMSS, and yet to date these have not been resolved. A response that attacks me personally and labels me a liar is far from adequate, and so the questions will remain.

The stakes are too high to simply look the other way.

Dr. Leavitt, nowhere to be found after shooting his arrow, has generated 58 comments, many asking where he disappeared after attacking an highly respected expert in EHR implementation.  Dr. Kibbe’s post has generated 30 posts, 10 of which are responses from David himself.

In other words, as expected, David Kibbe, one of the doctors most actively championing Participatory Medicine (although I think he doesn’t go far enough) has demonstrated once again the value of transparency, openness and conversation, while the defender of the monopolistic & paternalistic way of thinking could only respond to public questions with vitriol. Since both these individuals do represent the decision makers and opposite visions of governance, I’ll let you decide which governance method will offer better chances to succeed in reforming the incredibly opaque healthcare system.

“Tips for getting insurance when you have a pre-existing condition ”

The tips:

• Become a group of one
• If you’ve been laid off, get COBRA
• After losing your employer-related insurance…
• Find out whether your state has a high-risk pool
• See whether your professional organization offers group insurance