• What is the role of coaching in sparking and supporting increased participation over time?
• What can we learn from research on how social norms shape behavior—with the idea of developing hypotheses on whether social networks could serve as a coaching tool?

A recent two-day meeting convened by the Legacy Foundation’s Schroeder Institute focused on similar questions, asking an interdisciplinary group to discuss the following opportunities:

• Smoking is the leading preventable cause of death in the U.S.
• Nearly half of American adults use online social network sites such as Facebook, MySpace, and LinkedIn.
• Networks magnify whatever they are seeded with, for good or for ill.

A monsoon swept through DC on the morning of the first day and nearly prevented me from making it to the event, but I arrived in time to hear Nicholas Christakis’s keynote speech. He, along with James Fowler, wrote the book Connected, which is the source for the third bullet above.

Christakis talked about two ways to intervene in a social network: rearranging connections (isolating bad apples, for example) or changing the information flows (termed “contagion manipulation”). Christakis is betting on contagion manipulation as the most promising path for sparking health behavior change. Good thing, too, since most people who want to quit smoking probably aren’t ready to drop spouses and friends who smoke in order to succeed.

He also provided evidence that altruism spreads in networks. Experiments have confirmed what we have all seen in our daily lives: the more help you get, the more likely you will be to help someone else.

The rest of the morning’s presentations were dominated by other social network theorists and smoking-cessation experts, each of whom had evidence to share about the opportunities and pitfalls in their fields.

The turning point in the day came when a group of ex-smokers took the stage. It was as if all the charts and graphs and Ns had come to life to talk back to the assembled researchers.

Naturally these were the success stories, the ones for whom QuitNet and other online social support programs worked. But I appreciated hearing about their experiences with this or that intervention or treatment, what they liked or didn’t like.

One after another talked about how metrics motivate them: “I quit 193 days and 8 hours ago” and “I’ve been smoke-free for 2,000 days and not smoked 50,000 cigarettes.” And to a person they talked about the kindness they receive from strangers on their favorite online social network and their own motivation to contribute to the community.

It was Christakis & Fowler’s assertion come to life: Altruism spreads. Or, to bring it back to Kibbe & Kvedar’s question: If you have benefited from peer coaching, you are more likely to become a coach. And coaches not only stick to their non-smoking regimen, but stick around the network to spark this behavior in other people.

Jeri, for example, said she keeps an eye out for new users and tries to help two people each day. If someone hasn’t received any responses to a question or “crave” comment, she will respond and, even more powerfully, she will follow up the next day to see if the person was able to resist smoking.

During Q&A, someone asked what is the “pixie dust” for successful communities. Alan, a QuitNet admin, responded, “Our users come to us knowing they are dying, in the throes of a fatal addiction.” They are motivated to join, participate, and play by the rules. His metric of success is the ownership felt by members of the community.

One researcher asked a follow-up question: What is the longevity of the pixie dust? Will you need the community forever? The panelists answered, essentially, yes, but only because they want to give back what they received. Their friends are part of these smoking-cessation networks, whether engaged in on-site discussions about killing the crave for cigarettes, poetry, or skin care. The social life of health information is not restricted to a single topic, but rather is as diverse as the people who participate.

A third researcher asked how they “combat untruths.” The answer: The network heals itself. Their advice: Don’t build in too many controls, or you will crush the adaptations that squash falsehoods.

This brought up another theme: Who’s in charge? The answer: Everybody. Whoever is available at the moment steps up to support a fellow member who is dealing with a cigarette crave – and you may never hear from that person again on the site.

I was struck that day, by the fact that the Schroeder Institute event embodied the principles set out by Kibbe & Kvedar:

[T]he task at hand is to understand the value of individuals’ active, informed involvement in their health and health care, and what it will take to ensure that they are able to act on their own behalf. We believe that the answers will come from interdisciplinary research that calls on the knowledge and skills of patients, clinicians, behavioral and social scientists, and health services researchers.

I look forward to many more events like this one, whether they are large conferences or small meetings. The presence of a diverse group of discussants — including ex-smokers — changed the conversation for the better.

In a day or two I’ll be submitting the next entry in the series, on disruptive innovation – patient driven disruption. It’s a wonderful moment in our history when two of the best minds in health IT predict this is what’s coming.

But it means we have work to do. So if you’re into health IT, please catch up on this series – it’s clearly written:

The opening post is here; it introduces their seven observations. Nowhere have I seen it segmented this way:

1. Hospitals are grumbling but are playing in the game; success is not guaranteed. (April 2)
2. Key physicians will sit on the sidelines (at least for now). (April 5)
3. ONC got it right on the 3 major policy issues: Meaningful Use, Certification, Standards (April 14)
4. While most attention has been focused on demand side incentives (will doctors and hospitals buy EHRs?), the supply (vendor) side of health IT is already transforming. (April 19)
   —– Next up: —–
5. “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation.

I encourage you to dive into their series, with gusto. They’ve plowed through hundreds of blog posts and digested all the regulations, and what they’ve written is clear and goes down easy.
* ^{HITECH: Health Information Technology for Economic and Clinical Health act. HITECH is part of the 2009 ARRA economic stimulus bill}

Vince Kuraitis and David Kibbe are running an excellent series, “Is HITECH Working?”* In last week’s entry they linked to this slide deck by Wes Rishel and David McCallie of IT consulting firm Gartner. See discussion before watching.

Simple Interop for Healthcare (Wes Rishel)

“Interop” (interoperation, interoperability) is about how your health data will move from one doctor to another. It’s a big deal, because it affects how well doctors can coordinate our care, and in an emergency whether everyone can see what they need to know … to save your life.

Or your mother’s life. Or your child’s.

This is getting increasingly personal to me, because people have started coming to me and talking about the unnecessary death of a family member. I’m starting to see the pain in people’s faces from a premature death, and it’s starting to hurt. But keep ’em coming, because this is real and it needs to be out in the open.

At a policy meeting last winter I heard a tale – perhaps apocryphal, perhaps not:

A man’s having a great time in Las Vegas. He runs out of cash so he goes to the casino’s credit window. They pull up everything about his finances: his income, his credit card balances, which bank has his second mortgage, when he signed on it, everything. They find out what they need to know, make their decision, and give him the cash.

He goes back to the table, hits it big, and falls over with a heart attack. He’s rushed to the emergency room, where they know… nothing about him.

That story corresponds to the “use case” (the scenario) at the bottom of slide 15: “E.D. gets medical records for exceptional case.” When you’re thinking out how a standard will work, you need to think through a bunch of scenarios: who’ll need what information, and how it will get to where it’s needed.

And that gets complicated, which is why so much work is going on in Washington. It’s hard to get this work right, and you usually find strong differences of opinion. For one thing, the people who are already selling systems usually want the new standard to match what they’re doing, and the people who think they can do better want a wide open door to innovation. Understandably, just about everyone wants to maximize their own revenue.

That’s fine in ordinary commerce, such as the print industry where I used to work, where skull-knocking is just plain business. But I assert that in healthcare lives are at stake, and provincial concerns must be subordinated to human survival. Save lives first – then compete.

I think it reprehensible if a vendor wants to withhold medical information from another care provider in an emergency. Reprehensible. And “withhold” includes not actively finding ways to share the information.

Added 10:43am ET My sentiment here applies to providers, as well, who simply don’t want to adopt methods that keep patients safer. Paul Levy, CEO of Beth Israel Deaconess, drove this home persuasively in his speech this month to the hospitalist association, talking about the paradox of these smart people who went into this work to help patients, and who (paradoxically) are the fourth largest public health hazard. (That’s from Brent James of Intermountain Health: death by medical error is the fourth leading public health hazard.)

Why? Resistance to change. This must stop. And we, we all, must stop empowering the excuses. End of addition.

I say, if your top priority isn’t finding more ways to save lives, you ought not to participate in the billions of taxpayer-funded incentives – whose entire purpose is better care.

Lives first – then compete.

And that’s where this slide deck comes in. Its 45 slides reflect a lot of thinking, a lot of work; in the parent blog post author Rishel says he harvested many earlier posts about specific items, bringing it all together in this deck.

This is the first thing I’ve seen that, more or less, makes the issues clear to a lay audience. Here are a few definitions you may need if you’re new to such things:

• Structured data is the computer equivalent of filling out a form: you write “Dave” in the First Name box,  “deBronkart” in the Last Name box, “21″ for age, 03063 for zip code. Computers can track, summarize, and analyze structured data.
  • The opposite is free text: the kind of box in a form where you can write anything you want, and the computer won’t know or care whether it’s your age or your zip code.
    • The ultimate unstructured data is a fax. It conveys information, but only when a (falliable) human reads it. The same is true for all unstructured data.
    • BUT, unstructured data is better than no data – like the guy who went from casino to E.D.
  • The ultimate, the goal, is when the sending computer uses structured data and the receiving one does too.
    • Imagine if airlines had to work with unstructured data, with fax-like blobs of text. Structured data is information; unstructured blobs convey information only when read.
  • The trick, the difficult part, is that today everyone’s system stores the structured data differently, so it won’t transmit same-to-same.
  • And THAT is where we get into hairy details that can take forever to resolve.
  • Plus, the more complicated the details are, the harder everyone has to work, to write software that complies. That slows things down and raises costs for developers. And that raises costs for the physicians who pay for the systems.
• MIME is the data format tht systems use today to send email. It can be used to send anything, not just email; its great advantage is that it’s as simple and common (already in use today!) as sending and receiving email. These slides propose using MIME as the way for one system to send your record to another one.
  • Simple! “Simple interoperation,” as the title says.
  • Requires little or no software development or testing.
  • Free text can be sent as the body of an email.
  • Structured data, including PDFs or images, can be  sent as attachments.

Particular slides to note:

• Slide 7: What simple interop can do (handoffs of care to another provider, lab data (already in fields)
• Slides 9 mentions PHRs, noting “patient uses PHR to collect their own data from multiple sources and disburse it as they see fit. (Yes!)
• Slide 13: The use case of a primary doc referring you to a specialist – how does  your information travel? Considers cases where either doctor does not have a structured data system yet.
• Slide 17 gives several more use cases for patient engagement.
• 28: Minimum functions for PHRs (Personal Health Records): receive information from mulitple providers; attach it to the right person; deliver info to others as directed by the patient.

Don’t worry if some of these slides are unclear; you’ll still get the picture: even for a lay reader they explain the  pragmatic issues we’re facing, and they describe a clear and pragmatic pathway to encourage users  to adopt, i.e. to start using these systems.

There are people, with good intent, who don’t like simple subsets; who want to figure out a complete specification and then implement it all at once. But that’s old-school, it takes forever, and it creates a very long “time to value” outcome. (i.e., it takes forever before anyone earns back what they invested.) We don’t have time for that. People are being harmed unnecessarily. (Plus, as I said, it’s technically risky to try that approach.)

I reject the argument that any vendor has a right to put higher priority on its commercial interests than on saving more lives by transporting vital information between clinicians who need it to do healthcare.

Save lives first – then compete. I believe simple interop is a good, practical, expedient step forward. Thanks to Gartner for the slides and thanks to David Kibbe and Vince Kuraitis including them in their excellent series. (More on that seies shortly.)

* ^{HITECH: Health Information Technology for Economic and Clinical Health act. HITECH is part of the 2009 ARRA economic stimulus bill}

I am afraid that by focusing so much on HITECH and on the definition of Meaningful Use and Certification on this blog we have been missing on the most important part of the “ARRA” stimulus package , the initial $1.1 bn. funding of Comparative Effectiveness Research (CER) to be spent by Sep. 2010. Specifically some of the $400 millions to be used at the discretion of  the DHHS Secretary that must be allocated to encourage the development and use of clinical registries, clinical data networks, and other forms of electronic health data that can be used to generate or obtain outcomes data. It certainly looks like the national  implementation of EHRs may become fully intertwined with CER.

The minimum definition of “Meaningful Use” as defined in ARRA includes e-prescribing, electronic exchange of medical information and interoperability. These are also the necessary elements to start implementing a national CER strategy.  There is just too much at stake this time to think it won’t happen.

e-Patients should become informed about the potential impact of CER for future care. Please read the summary of the “Listening Session of the Federal Coordinating Council for Comparative Effectiveness Research” from April 14, 2009 to get a better understanding why we, the patients & patient groups, must get directly involved in helping to develop the CER private/public infrastructure & activities.

The Administration’s Real Focus: CER

Peter Orszag, White House Budget Director, produced a study on CER (“Research on the Comparative Effectiveness of Medical Treatments“)  when he was director of the Congressional Budget Office (CBO).  He held that position during 2007 and 2008, where he emerged as a forceful advocate of controlling entitlement spending and improving the effectiveness of the health system. His current position puts him in the center of the Obama administration’s health policy circle.  Twice this week he has spoken about CER. First in an NPR interview on May 12:

Some of the cost-saving measures discussed by the coalition representatives involve computerizing medical records and coordinating care, but other initiatives are more controversial — including the use of comparative effectiveness research in patient care.

A few months ago, as part of ARRA there was controversy over the use of CER and yesterday at the meeting with the President the incoming head of the AMA and the representative of the pharmaceutical industry both embraced CER.”

This was followed by an opinion piece in the Wall Street Journal:

How can we move toward a high-quality, lower-cost system? There are four key steps:

1. health information technology, because we can’t improve what we don’t measure;
2. more research into what works and what doesn’t, so doctors don’t recommend treatments that don’t improve health;…

Why is this so significant? What follows are a few quotes from the 2007 CBO document produced under his supervision:

[..]The rate at which health care costs grow relative to income is the most important determinant of the country’s long-term fiscal balance; it exerts a significantly larger influence on the budget over the long term than other commonly cited factors, such as the aging of the population or the coming retirement of the baby-boom generation. Rising health care costs represent a challenge not only for the federal government but also for private payers.

In addition, because federal health insurance programs play such a large role in financing  medical care and account for such a large share of the budget, the federal government itself has an interest in generating evaluations of the effectiveness of different approaches to health care.

[..]Generating evidence that compares treatments is what research on “comparative effectiveness” does.

Orszag may have been the CER main proponent until now but there is clearly a concerted effort by the administration to ramp up public mentions of CER. During the Senate hearings on her confirmation, HHS Secretary nominee, Kansas Gov. Kathleen Sebelius, spoke of her support for the use of electronic medical records as a way of data mining patient information:

EHR data is crucial to conduct “comparative effectiveness research [CER] to provide information on the relative strengths and weaknesses of alternative medical interventions to health providers and consumers.”

AHRQ (Agency for Healthcare Research and Quality) is the lead agency of the federal government doing CER since 2005 and has been allocated $300 million for CER. Carolyn M. Clancy, M.D., Director of AHRQ has been speaking about CER for a long while. In a 2007 congressional testimony she said:

I would like to mention briefly the role of health IT, which will make it easier for researchers to gather information for their research and for users of research findings to get information in real time when they need it.  The health care system’s growing investments in health IT provide us with an unprecedented opportunity for redefining the possibilities of observational studies, accelerating and targeting the uptake of relevant information, and providing feedback to the biomedical enterprise itself.

Health IT will make it possible for research to answer the pressing questions facing the health care system more quickly and efficiently.  In the future, health IT will provide us with the vehicle for transforming our health services research enterprise so that we can evaluate the effectiveness of interventions and treatments in real time as a byproduct of providing care.

Why The push To Use CER?

There are so many more clinical options now than ever before, with new products and services flowing into the market, that questions about evidence of effectiveness, quality, and value have reached unparalleled intensity.

Until now most medical evidence has been derived from randomized controlled trials (RCT). However, there is growing recognition that most questions relevant to everyday clinical practice cannot be addressed by RCTs. There is a real need to devise other means of creating evidence in a timely manner. There is clearly a major interest by many to extract evidence from electronic health records (EHR) data and use that evidence to conduct CER studies. Integrated systems like Geisinger or Kaiser Permanente have not been waiting for Federal funding to start conducting such studies.

For Kaiser, “the goal is to figure out under what circumstances is a given therapy best for certain patients“. To achieve that, a team of pharmacists, doctors and other researchers have been conducting CER, “scouring the globe” for data on how well medications, devices and procedures work. To date, most of the comparative effectiveness research has focused on drug therapy. Research it has conducted on various cholesterol-lowering drugs, for example, has led Kaiser to recommend that its clinicians prescribe generic simvastatin as a first-line treatment for patients with heart disease or diabetes. If that doesn’t work, the dose is doubled. If that doesn’t get the patient’s cholesterol under control, the guidelines suggest adding other drugs.

By its own estimates Kaiser, using data from the CER, has saved so far:

• $70 million on treatments for high blood pressure,
• $80 million on antidepressants and
• about $100 million on cholesterol-lowering medicines.

And now it is expanding the CE program, using an in-house joint registry database with details about replacement hips, knees, and other similar surgical procedures. Clinicians and their patients can consult the database to help them decide which device is most appropriate, given each patient’s age and level of activity. A risk calculator tells patients what they can expect in terms of likelihood of infection and replacement joint failure based on Kaiser’s experience with a particular device. There is at least one clear advantage for this database. Before the registry, clinicians were getting the bulk of their information from vendors and manufacturers’ representatives.

The Public View On EHR/CER

A recent NPR/Kaiser Family Foundation poll shows that the American public is surprisingly more positive about the potentials of EHRs than most professionals. People already are familiar with computerized information and accept its risks.

People do their banking. They certainly do shopping these days by electronic means, and so in any of those cases you find people concerned about their privacy, but people are still doing it. They see enough of an upside for the convenience.

Mollyann Brodie, director of Kaiser Family Foundation’s Public Opinion and Survey Research program (NPR.org, 4/22).

It may be that the public is unaware of the kind of data mining that is already one with their financial information. It puts to shame any potential use of EHR data for CER! Read the NY Times article “What Does Your Credit-Card Company Know About You?”

When it comes to CER this poll also found that

• a majority of U.S. adults (55%) would trust a panel of experts from an independent scientific organization to make recommendations about which treatments should be covered by insurers, but
• fewer people (41%) would trust if the panel’s experts are described as being “appointed by the federal government.”

Mollyann Brodie said that people are concerned that their physicians would not have control over their health decisions.

People are really trusting of their individual doctors, and a lot of experts might say that that’s, you know, misplaced trust, that the doctors don’t have all the information they need. But it is the individual doctors that the public most trusts to make these decisions.

That corresponds to the data from the Pew Internet Project.

So, one thing is clear: the way comparative effectiveness research is framed is critical to how it is likely to be received. If it is seen as simply another attempt by payers to control costs, doctors, patients and the public at large are likely to resist the concept.

Although the final text of ARRA removed earlier drafts references to comparative cost-effectiveness we can be quite certain that this will come back. Comparative cost-effectiveness analysis, brings economics into the equation and seeks to establish which of several therapeutic strategies is capable of achieving a given therapeutic goal at the least-cost strategy. No wonder it has had such forceful opposition from most professional medical societies and the pharmaceutical industry!

You can be sure that we haven’t seen yet the big fight over healthcare reform. And you can be sure it will be directly related with the implementation of CER and it’s use to help us decide what procedures should be used to treat patients, individually, locally or nationally.

We (the US, and probably the world) are at a pivotal moment in healthcare, a turning point. The direction we choose now can have a lasting effect on how well healthcare works in the coming years – even for the next decade, I suspect. So as we consider this, I suggest that we think not in 2010 terms, but 2020 terms.

The issue at hand is the definition of “meaningful use.” You’ve probably heard of the $19B in the US “ARRA” economic stimulus package that’s set aside to encourage adoption of electronic medical records systems. (A Google search for “HIT stimulus ARRA billion” produces 25,700 hits.) Medical practices that have EMRs and put them to “meaningful use” will get higher reimbursement from the government.

When the stimulus package was passed by Congress, the term “meaningful use” was intentionally left to be clarified later. See David Kibbe’s comment here for three items that were specified. And here we are: the work is now underway to define and clarify that term. Many meetings are happening in Washington to get this done.

I believe, and many basically agree, that meaningful use should be defined to include full patient access to their data in EMR systems. Here’s why.

First, let’s look at the world for which we’re designing: 2020.
 

2020: The world for which we’re planning

The systems we design today will be in use a long time from now, so I suggest we look at the world as it will be in 2020, and how we’ll be using these systems then. What does that world look like?

• We will all be ten years older. You will be ten years older; your children will be ten years old; your parents will be ten years older.
• The internet will be ten years more advanced. If you think back to the dial-up world of ten years ago (1999), when browsers were just five years old, there’s been a huge amount of progress … and, significantly for this discussion, a lot of it’s related to having more access to our personal data online: banking, plane reservations, shopping, and more. Think how that will change in the next decade.
• Handheld computers (smartphones) will be ten years more advanced. (More advanced? Heck, the iPhone was only introduced 28 months ago.)
• Connected e-health devices will be out of their infancy: WiFi blood pressure monitors, bathroom scales, glucose monitors, you name it. It’s fairly certain that by then we’ll be able to use cheap devices that send routine data to some central storage place, where smart software (your choice of smart software) can send out alarms or reminders, your care team can view it … and you should be able to view it, too. And make notes on it.
• Doctors will be ten years older. Fast Company magazine’s Doctor of the Future Jay Parkinson will be middle aged (Ha!). Our oldest doctors will be retired (or dead). Today’s youngest doctors will be well into their careers and owning practices; a new generation of providers will be practicing who were born after Amazon.com (1994). They have never known a world without household email. They expect everything to be online.

In this world, what kind of data access do we want? We need to build that into our design choices now. Why?
 

The product development cycle

It takes time to plan, design, code, test, install, and train on systems. And once that’s done, the decisions that are made will be with us for a long time – until vendors decide to go through that whole process again.

Sure, a lot of code gets written and updated fast. But if I’ve learned one thing about healthcare IT since I got in the e-patient game, it’s that healthcare systems are big, complex, and slow to change. These are not things that get re-engineered frequently.

Docs/nurses etc: how old are the systems you use today? Some are new, but many of you are using systems designed in 2000, right?

And here’s where regulatory requirements come in.
 

The impact of regulatory requirements

Some regulatory requirements profoundly affect product design. If a law is passed saying you can get a tax credit for a computer where the “Q” key is colored orange, vendors will offer that, because customers will buy it. Similarly, if a law requires that a system have a particular feature, people will only buy that, so vendors put it in the product plan, right from the get-go.

That’s the case with HIPAA: many systems are required by the government to be HIPAA compliant. So vendors design accordingly.

And so it is today with the definition of “meaningful use.” Providers will only receive stimulus money if the system they choose meets the definition of meaningful use. So the definition we choose today can have a profound impact on what you can do with your data far into the future.
 

My principles

• Patient is a first-person word. Your time will come: someday it will be you, your child, your mother, your spouse on that hospital bed or at that roadside being tended by an EMT. The way to think about this is in the first person: when that time comes, what should be possible with “my data,” not “patients’ data.”
• It’s my data. It’s my life that’s at stake. I have a right to seek the best care in the world, and if that means exporting a copy of my data from your system and taking it somewhere else, I have a right to do that..
• Corollary: No more proprietary captive data. (Edited 11:20am EDT) We must put an end to the era where a system provider thinks the data they collect is their property. Lives are at stake. Whose data is it, anyway?
          Vendors must adapt to a world where they earn their margins by creating on-going value, not by holding data captive. This includes images (CT scans, MRIs, etc, at full diagnostic resolution) as well as lab results and everything else.
          Added 11:40am EDT: My opinion is that “whose data is it” applies to providers as well as system vendors. If you haven’t yet, consider what happened to Web guru Doc Searls last year when he couldn’t share his scan data with another MD.
• Enable participatory medicine – doctor-patient collaboration. Make it possible for each party to view the same data. (Ideally, I’d like to enable collaboration tools such as online discussion of my medical records – but that’s beyond the scope of this post.)
• Let each constituency say what works for them. Patients shouldn’t say what doctors need, and doctors shouldn’t mandate how patients should and shouldn’t describe things.
          Warning: experts on both sides should be able to comment on / warn the other about apparent errors. Docs must be able to say “Whoops, you overlooked this,” and patients must be able to say “Whoops, you overlooked this.” (See related discussion of “who will vet the vetters” in “Medpedia: who gets to say what info is reliable?”)

Recommendations

These are my personal recommendations, not necessarily those of e-patients.net or the Society for Participatory Medicine. (Hey you out there – what do you think? Participate in the comments! You count!)

• Grant patients full access to their medical records.
          Exception: the best minds I know have said doctors need the ability to store private notes, and I can grant that. But I want full access to all my data: all the numbers, all the test results, all the radiology reports, everything.
          Added 11:45am: Among other things, the records might contain errors, and we can help clean them up.
• Let me export my data and take it elsewhere. I have a right to seek the best care anywhere, even if it means going somewhere else. Systems must be designed to allow exporting data (and, of course, importing data). I know there are lots of details to be worked out. Let’s just start with this principle: it’s my data.
• Enable the most able. Don’t dumb down the data. Allow different levels of viewing – simple, medium, expert. (Hint: let each group participate in creating the language, and let users vote it up or down.)

This is our golden moment. It’s not fundamentally hard to give patients access to their data, not any more than it’s hard for banks to give us access to our banking information. It took banks two or three generations to get it right, but the technology exists, and now it’s widespread. Let’s encourage EMR vendors to get it right on the first try, by defining meaningful use to include giving us full access to all our medical data.

A great organization called the Markle Foundation has recently issued a paper that lays out their thoughts on this issue. I like it, and so do the rest of the people on e-patients.net who’ve voiced an opinion in the back room. More on that Sunday. My post on that is here.