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

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

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

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

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

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

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

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

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

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

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

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

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

Hell if I know.

So hard, in fact, that it has given up and is shuttering its Google Health service, after just 3 years being open to the public.

Now’s a good time to review Google Health and why it may have never been the roaring success Google had hoped it would be. Perhaps this can act as a warning for future companies who think that (a) there’s a huge, pent-up demand for personal health records and (b) implementing them in a way that is engaging and helpful is easy.

Let’s start with Google’s statement about Google Health’s failure to capture any significant component of the electronic health record space:

In the coming months, we’re going to retire two products that didn’t catch on the way we would have hoped, but did serve as influential models: Google Health (retiring January 1, 2012; data available for download through January 1, 2013) and Google PowerMeter (retiring September 16, 2011). Both were based on the idea that with more and better information, people can make smarter choices, whether in regard to managing personal health and wellness, or saving money and conserving energy at home. While they didn’t scale as we had hoped, we believe they did highlight the importance of access to information in areas where it’s traditionally been difficult.

Of course, when you shut down a product, you have to put as a good a face on it as possible. It’s not a failure — it was a “influential model” for the entire industry! Despite have zero data to demonstrate that Google Health actually helped “people make smarter choices [about their health],” they promote the claim to make it seem like Google Health made a difference.

Objectively, it’s hard to exactly see what kind of difference — for better or worse — Google Health may have made. Since they’ve never publicized numbers of total or active users, it’s hard to gauge whether it had any impact whatsoever. But we know how it helped move the needle in at least better understanding the complexity and difficulties of medical and health data.

That’s because of our own e-Patient Dave, who took Google and his hospital up on the promise of Google Health. As he he detailed a year after Google Health launched, he had a difficult time using it with actual real-world data from his doctor. He had good reason to believe Google Health could help him gain better access to his health records, because that’s what the hype machine suggested:

When Google Health launched last May, my hospital’s CIO blog said “we have enhanced our hospital and ambulatory systems such that a patient, with their consent and control, can upload their BIDMC records to Google Health in a few keystrokes. There is no need to manually enter this health data into Google’s personal health record, unlike earlier PHRs from Dr. Koop, HealthCentral and Revolution Health.”

Sadly, it appears Google’s QA team never actually tried to do what they and their partners said was readily do-able with Google Health — use it to view and interact with their medical and health data.

When it launched to the public in 2008 (after being in development and private testing for two years), Marissa Mayer, who took over the Google Health initiative from Adam Bosworth, was very optimistic about the product’s potential and future:

Google Health, Ms. Mayer said, represents a “large ongoing initiative” by the company, which she said she hoped would eventually include “thousands of partners and millions of users.”

She had good reason to be optimistic. Because, after all, people already use Google to search for health information. Why not help them even more?

“If you look at health care, there’s already a huge user need, people are already using Google more than any other tool on the Web to find health information,” Mayer said. “And the health care industry generates a huge amount of information every year. It’s a natural core competency fo us, to understand how to organize all that data.” [...]

While the focus will be on improving health care and making records more accessible and portable for patients, Google will also improve life for physicians, Mayer noted.

“The goal for a lot of doctors is how many patients can they see in a day,” Mayer said. “That means their minutes per patient has got to go down, and the less time they have to spend finding and going over patient records the better. Ultimately we will design a product that’s useful for users, and also helps doctors do their job more quickly and more efficiently.”

Great ideas. But they never materialized into a product that either doctors or patients (or just ordinary people) could readily or easily use and master.

My own review of the initial release of Google Health demonstrated a product that left more than a little to be desired in lack of bringing anything much new to the table. No cool visualizations. No engaging game component. Nothing other than your manually-entered data (if you didn’t want the nightmare e-Patient Dave experienced) and some boring graphs. Combined with not being a HIPAA-covered entity, it may have been enough to sink expectations as the product’s updates were few and far between.

RIP Google Health; I’m not sure how “influential” you were, other than to act as a role model of how not to role out an online personal health record without significant real-world testing ahead of time. You were not a good idea ahead of its time; you were simply an idea tried many times before and coming up against the exact same problems of prior efforts — nobody is much interested in data for data’s sake.

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

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

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

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

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

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

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

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

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

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

What will they find?

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

Well, it seems, not a whole lot.

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

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

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

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

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

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

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

That’s just plain wrong. You shouldn’t get away with pretending to be patient-centered, any more than you should get away with pretending to be in love. So let’s get specific.

My view is that shifting to patient-centered care entails cultural change, which is difficult. Getting there requires a multi-faceted approach. Part of this involves spreading the meme, but this must be followed by education of all stakeholders in the healthcare system. One way to accomplish this is by providing concrete examples (“you know your practice is participatory if…”). Then we’ll be able to measure practices against this list of attributes.

Let’s crowd-source it. How do you separate the participatory from  “empty words” people? Here is my starting list of the most important attributes.

• Do you use an electronic medical record?
• Can patients can see their records online?
• When the EMR is being used in the office, is the screen is oriented so patients can see the record while the clinician is using it?
• Are there internet-connected computers and/or free wireless access available for patients/families?
• Do you have a patient/family advisory board?
  • Do you listen to them?
• Do you provide online patient services: education, tools, prescription requests, appointment requests, etc.?
• (Hospitals) Do inpatients have free, reliable and modern entertainment systems?
• Can patients/families contribute to the medical record?
• Are patients encouraged to seek health information on the web, offered advice, and given helpful answers to questions about what they find?
• Are intake forms online, prefilled when possible? (Not handwritten on clipboards)
• Do providers appreciate that most care takes place outside the office/hospital? (See Doc Tom Ferguson’s famous “steal these slides“)
• Are providers comfortable saying “I don’t know—let’s find out together”?
• Do providers practice shared decision making with patients and caregivers?
• Are patients encouraged to interact with their providers using secure messaging and other tools besides the telephone?
• Are patients always informed about test results?
• Does every encounter end with the provider asking if there are other questions or concerns?

What do you think? What issues would make you say “BS – you’re not participatory”? Comments please.

(Also: join the Society for Participatory Medicine to support the movement; participate in meetings of the Person Centered Health Community.)

That led me to ask him to offer email subscriptions. He did, I signed up (you can, here), and holy COW look at ONE DAY’s delivery:

• Lower EHR use in Hospitals that care for the Poor
• Guest Article: Open Source EMRs for free clinics
• Participatory medicine and health data rights on NPR
• The Health Internet vs. the NHIN — A Matter of Control, Cost, and Timing
• Electronic Health Records Not Yet Making Impact, Patients Turn To Web For Advice
• London SCR roll out announced
• California community health centers to go digital
• Is cost finally moving the needle for EHR adoption?
• Patients Turn To Online Buddies For Help Healing
• In Home Elder Care Robot Trials Begin

Lower EHR use in Hospitals that care for the Poor Posted: 16 Nov 2009 01:47 PM PST “Hospitals that treat large numbers of poor patients utilize electronic health records (EHRs) less frequently and provide care of lower quality, according to a study by Harvard scientists. However, the scientists also found that when such hospitals do use EHRs, the quality gap disappears. Ashish Jha and colleagues used the Medicare disproportionate-share hospital (DSH) index as [...]

Guest Article: Open Source EMRs for free clinics Posted: 16 Nov 2009 01:30 PM PST “Kevin Clifford and I were chatting about his experiences in taking a Michigan-area free clinic live on an open source EMR and I was very interested to share it with others. Kevin said he volunteered at the free clinic because he wanted to serve his community and said that there are many other such free [...]

Participatory medicine and health data rights on NPR Posted: 16 Nov 2009 01:20 PM PST “NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights. Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you. I’ve already started answering questions on Twitter about [...]

The Health Internet vs. the NHIN — A Matter of Control, Cost, and Timing Posted: 16 Nov 2009 10:50 AM PST “There is growing tension within the Obama administration’s health team over who will control health data exchange: everyone (including consumers and their doctors), or just large provider organizations. The public debate will be framed in terms of privacy, security, and the adequacy of current exchange standards. But what really matters is who gets to make [...]

Electronic Health Records Not Yet Making Impact, Patients Turn To Web For Advice Posted: 16 Nov 2009 10:06 AM PST “As the United States launches “an ambitious program, backed by $19 billion in government incentives, to accelerate the adoption of computerized patient records in doctors’ offices and hospitals,” a new study of 3,000 hospitals “has found little difference in the cost and quality of care,” The New York Times reports. “Dr. Karen Bell, a former [...]

London SCR roll out announced Posted: 16 Nov 2009 09:58 AM PST “The Department of Health has announced that the Summary Care Record is to be rolled out across London from this week. The Princess Street Group Practice in Southwark will be the first GP practice in the capital to upload SCRs, with this scheduled to happen on 19 November.” Article Fiona Barr, e-Health Insider, 16 November 2009

California community health centers to go digital Posted: 16 Nov 2009 09:54 AM PST “Neighborhood Healthcare, which serves communities in Riverside and San Diego counties, will automate both the clinical and business sides of its health centers for its 115 providers across 11 locations. The 40-year-old organization has selected technology from Westborough, Mass.-based eClinicalWorks. Neighborhood Healthcare will deploy both the unified electronic medical records system and the practice management solution [...]

Is cost finally moving the needle for EHR adoption? Posted: 16 Nov 2009 12:46 AM PST “The biggest barrier to electronic health record (EHR) adoption has always been the upfront cost of implementing the system and the productivity lost during the learning curve. The rapidly changing healthcare landscape, however, may make cost the reason why physicians adopt health IT. Come again? The Centers for Medicare and Medicaid Services (CMS) recently announced a [...]

Patients Turn To Online Buddies For Help Healing Posted: 16 Nov 2009 12:45 AM PST “When Americans go looking for information on health, they turn to the Internet as one of their first sources. According to a recent survey by the Pew Internet and American Life Project, 61 percent of adults say they look online for health information. There’s a term for them: e-patients. Most e-patients go online to read about [...]

In Home Elder Care Robot Trials Begin Posted: 16 Nov 2009 12:44 AM PST “GeckoSystems Intl. Corp. announced today that they are starting limited in home evaluation trials for their first product, a personal companion home care robot, the CareBot(TM). GeckoSystems is a dynamic leader in the emerging Mobile Service Robot (MSR) industry revolutionizing their development and usage with “Mobile Robot Solutions for Safety, Security and Service(TM).” “Practical, cost effective [...]

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.

Technology is always framed as an end and it is not. It is a means. The “end” for most people is getting the information and care they need.

The group went on to talk about how convincing docs to track their patients with electronic medical records is really not the point. Better health outcomes is the point.

Can we break that down a little further? If you had one minute to address the nation on the topic of health, what would you say? Put another way: What would your headline be?

But what really concerns me is the increasing connection between real people and the health information they post online, with apparently little understanding or concern about the real-world effects of sharing such information in public, searchable databases.

For instance, yesterday I blogged elsewhere about how Facebook’s latest privacy intrusion was actually much worse than it at first seemed. Some people don’t connect the dots, though. If Facebook — the most popular social networking website online at the moment — can do this and get away with it (even if it’s only for a week or two before they roll it back and roll it out later on under a different name with different controls), guess who else will be trying out these new technologies soon enough?

Well, everybody online. And that includes all these health companies encouraging you to sign up for their own personal health record or electronic medical record. Because while everybody likes the nebulous idea of an electronic medical record, very few people are actually managing their own. And for good reason. It’s hard work and requires inputting a lot of data manually, consistently, and reliably. Over time. For each member of your family. Last time I checked, most of us weren’t up for the additional part-time (free!) task of data input analysts.

But here’s the real kicker. Once you actually input all that database into a single company’s online database, you have zero guarantees about what happens to that data once entered. You heard me right — zero. You may be thinking, “So what? Who cares who sees when I last got a flu shot?” You may also be thinking, “Really? They have a terms of use or something on their site that says they’ll never share that data…”

First, about that flu shot. You’re right, many people won’t be interested in when you got your last flu shot. Except people who sell flu vaccines. Or researchers needing research subjects of people who get flu vaccines. And of course, the flu is the least of your worries. What you should really worry about are more serious health data, like high cholesterol levels or high blood pressure, simple everyday data that could mean you could pay double your annual premiums if a health insurance company ever had access to that data. Even if that data was “anonymized,” companies have an amazing ability nowadays to cross-reference multiple databases to pinpoint the individual identities of people without access to their names, DOBs, or social security numbers.

You’d think this was crazy if it weren’t true. But it is. Look no further than online health websites that also try and sell you health insurance (and, at the same time, ask you to fill out a free health profile!). Why else would an informational or social networking health website be in the insurance business?

Second, about that terms of use and privacy policy that is supposed to shield you, the user, from bad stuff being done with your data. I can tell you point blank that everyone of those terms of use and privacy policies don’t shield you from the company being acquired (which happens all the time to Internet startups) and having a new terms of use and privacy policy posted that offer no such guarantees. Guess what most consumers do when they get a notice about updated terms of use or privacy policies? They ignore them. We did an informal survey last year on our own website about how many of our members actually read either the terms of use or our privacy policy before agreeing to them. The number was staggering — less than 5%. So if nobody is really paying attention to them, then companies can get away with all sorts of privacy shenanigans.

Which is exactly what Facebook tried to do and what others will constantly try to do as long as their is the incentive for increased revenues and therefore increased profits from doing so.

It’s harmless information when it comes to buying shoes or knowing you like fly fishing. It’s potentially far more harmful information when someone outside of your “social network” discovers you’ve been treated for depression 4 times in the past 6 years.

What’s the answer? I’m not certain. But my advice is to tread very carefully in who and where you share your personal health information with for a few years, and to err on the side of caution rather than ‘sharing’ with these services. Because unlike fly fishing, your health is your very life.