Man with defibrillator wants to know what his heart is saying

Photo: Laura A. Oda, San Jose Mercury News

Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.

All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.

But Campos had to step onto a national stage in his fight to see the data his body produces.

His David-and-Goliath campaign puts him on the leading edge of what’s called the “e-patient movement” — “engaged, equipped and enabled” — that seeks to harness data so patients can learn more about their bodies.

“It’s mine. I paid for it. It’s in my body,” asserts the tech-savvy 45-year-old, who since his sudden collapse at the Fruitvale BART station four years ago has devoted himself to studying cardiology textbooks, attending device symposiums and scheming how to access the electronics of his tiny defibrillator.

“I have a right to my own damn data,” he said. … (See Mercury News site for full text.) 

What better place for this story to land than in Silicon Valley’s premier newspaper?  Several of us have been saying for ages that it’ll be great when innovators can pounce on medical data streams and do something innovative with them – especially, make those streams into something we ordinary mortals can understand. Have at it, fellow geeks! (And writer Krieger clearly gets it about the significance of data streams.)

Fellow SPM member David Lee Scher, MD (@DLScherMD) is also quoted, with a perfect participatory perspective:

Campos’ campaign has a professional supporter.

“It is embarrassing to leave our patients in the dark, by design or technological necessity,” wrote Dr. David Lee Scher in his blog. The former cardiac electrophysiologist founded DLS Healthcare Consulting, which advises digital health companies.

He cautions that the data is very technical, even for physicians, and often irrelevant. He urges patients and physicians to work together on a solution.

And that perfectly spotlights the participatory medicine aspect:

Our Society’s definition of participatory medicine, at the top of the website, begins: “…a movement in which networked patients shift from being mere passengers to being responsible drivers of their health…”  When you listen to Hugo’s TEDx and NPR pieces, it comes through loud and clear: that’s exactly what he and his ICD User Group want to do. Be responsible.

But the next piece of the definition is what’s currently missing: “…and providers encourage and value them as full partners.” He’s asking for the device makers, too, to encourage and value him as a full partner – in saving his own life, for heaven’s sake.

On a cultural note, the article says he wrote new lyrics to a Sixties protest song by Malvina Reynolds, “It Isn’t Nice” – and last summer he blogged a YouTube of it. The lyrics won’t win a prize for grace and meter, but hey, folks, this is folk music – vox populi - the voice of the people! Are you listening??

For the full lyrics, see his ICD User Group blog.

And in case you haven’t heard Malvina’s original peppy civil rights protest song, here it is. Enjoy that good old twelve-string guitar.

Do I hear a “power to the people” blowin’ in the wind?

Remember, “patient” is not a third person word. Your time will come.

A conversation on the SPM listserve was started by Joleen Chambers, @JjrkCh, a patient advocate for patients with failed medical devices. Here’s her Failed Implant Device Blog. She made a plea to have our members support a petition on the ConsumersUnion site that would enable medical devices to be more heavily scrutinized by the FDA, and outlined the needs for a better tracking system of medical devices than which currently exists. This includes the ability to contact patients in the event of a device’s recall.

These are all critically important things to have in place. I have a vested interest because I happen to have a failed medical device.

The conversation broke out when Joleen’s reference’s were put to the test….in her email she mentioned “millions of medical devices” and at the recall rate of 700 per year. A list member shared a link from the FDA listing medical device recalls, whose numbers differed from Joleen’s, and there was much discussion of her assertion. I made the point that we, as patient advocates, need to be clear on our data to support our argument. Dubious data, with the correct intention or not, undermines our credibility as patient advocates. Others chimed in, producing a really engaging dialogue.

In a parallel universe, Hugo Campos, @HugoOC, a patient advocate, poses the question: Who owns the data from his implanted heart defibrillator, (an ICD)? because he has been struggling to get access to the raw data from his heart monitor, that collects a large number of data points around the heart and the clinical status of his body. Hear the podcast here, from on NPRs media.org, and his TEDx presentation. The manufacturers argue that he would not be able to understand the data. Hugo is a selfquantifier at heart (no pun intended). Through his own self monitoring activities, he learned that coffee and scotch whiskey were triggers for cardiac arrhythmias.

Joleen’s argument that we need to support an independent registry and better monitoring of medical devices is important for patients, as is my argument, that we should have the right to know what is implanted in us. (I have requested from my doctor the information on my hip implant parts without luck, so far. I have my operation report and associated medical records, and nowhere is there information on what parts were installed. Someone has to have this information somewhere…no?) This aligns with Hugo’s assertion that he (or any patient) should have access to the data that his implanted medical device is collecting and transmitting about him to some place somewhere. All these should be our patient rights.

The real underbelly of this issue, for me, is who has responsibility for when something goes wrong?

When there is an implant that has been recalled, what happens to us, patients? Who pays to fix it?

What if it is a critical function device, like a heart defibrillator? Who’s liable is hard to determine unless really obvious (as is in my case). What happens, as in my case, when 90% of my femoral bone has grown into a hip implant except the tip, (mind you it is quite an uncomfortable pain…like my leg is snapped at that point) and doctors are throwing around words like, “We will throw in someone else’s femur and wire bind it to yours”, or “We could try a controlled fracture of the femur and dig out the titanium stem and hope for the best.”

That is when I think “#WTF, what a mess!” I am the one living in pain, and no good solution, and I will be paying for the surgery, not the doctor (at least that is not how the system currently works as far as I know), and what is really irritating for me is that the reason why I am having an early hip replacement in the first place is because of a medication that I was given for a misdiagnosis. How’s that for a double whammy. (That’s a whole other story.)

The question remains: how is the medical machine positioned to manage these types of complications? What I do know is that recently in 2009, for orthopedic devices at least, the AAOS (the American Academy of Orthopedic Surgeons) has sponsored a implant registry to track devices. I have no idea how to access it, and I would really like to know if my problem is being tracked. I cannot even get the info from my doctor, which I am working on. Although, the AAOS does not list patients directly as a stakeholder, it does list patient advocates, and it does indicate that the registry should be transparent. I would really like to get some ortho’s response about the registry. With this post I will put out a tweet to my Ortho twitter list including: Howard Luks @HjLuks, Katherine Burns @KburnsMD, and Steve Mora, @myorthodoc among others.

I also think we as advocates need to reach out and partner, in the hopes of transparency, with groups like the AAOS to have at least ortho implants information available to the patient. Patients should be able to add their own experience of their device.

I think there is a fine line between what a doctor considers a failure and what a patient does. I think I would technically not be considered a failure, although I cannot walk very far without pain. I also think we need to support more stringent rules on how devices get to market and are monitored. As such I support Joleen’s legislative efforts and will add my name to her petition for better management of these devices.

Also, I think patients have an inalienable right to their own data. Ultimately, this is all about the same thing, which is being educated empowered engaged patients partnering to make healthcare better for each/all of us and more transparent.

Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”!

From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below …

———- Forwarded message ———-
From: Joe Graedon
Date: Sun, Jan 22, 2012 at 5:01 PM
Subject: Re: [SPM-MEMBERS] HUGO on “On The Media!”–LISTEN!!!
To: SPM-MEMBERS@lists.participatorymedicine.org

We just heard Hugo’s interview on “On The Media.”

It was FABULOUS! Hugo, great job mentioning e-Patients and explaining what it is all about.

Hugo has carried the banner beautifully.

Here is the link:
http://www.onthemedia.org/2012/jan/20/who-owns-data-inside-your-body/

And now….who is going to blog about this on e-patients?

Dave???

Joe & Terry

On Jan 22, 2012, at 4:57 PM, e-Patient Dave deBronkart wrote:

I spoke with @HugoOC today and he told me -

- MIT Technology Review interviewed him at TEDx Cambridge and did a big article on him. (I “ordered” Hugo to deliver the goods so we can post about it!!  Dork. :-))

- Then this week he was on NPR’s “On The Media”!   (Ditto on the above!)

Won’t it be great if this whole subject starts moving out to the general public???

And where, we might ask, is that more vital than in the heart?

SPM member Hugo Campos (Twitter @HugoOC) has a cardiac condition that makes him vulnerable to sudden cardiac arrest. Fortunately he has a device, an ICD – implanted cardiac defibrillator – a magical gadget that helps prevent arrest.  That’s good. But he’s also a geek – a data fiend – who would really like to make use of all the data in the ICD, and he can’t get at it. After all, he has a digital pedometer, Zeo sleep system, digital everything, and he tracks all that data – isn’t it ironic that the most important data is hidden from view?

So last fall at TEDx Cambridge, he gave this nine minute talk that makes the case – compellingly, I think – for letting him do as much as he can to use his heart’s data to save his own life. And tells the TEDx world about SPM, and e-patients “shifting from being mere passengers to responsible drivers of their health.” Spread the word!

Message Date/Time: 1/17/2012 10:00:06 AM
Read Date/Time: 1/18/2012 7:19:08 AM
From: OpenNotes, Study
To: deBronkart, Richard Davies
Cc:
Subject: Reminder: Review your doctor’s notes before your next visit!

---

Dear Patient,

You have a visit scheduled with your doctor soon, and you may find it helpful to review the notes your doctor wrote after your last visit.

The doctor’s notes can be found in the new “Notes” section of PatientSite.  To view your notes, …

I did, and my goodness, there’s a bunch of stuff in there that I’d forgotten!  (Shortly after my June visit I blogged that I’d looked back at the notes to remember a to-do, without having to call the office. Nice.)

Observations:

• It’s good that I can see it. Otherwise I would have been a less-prepared semi-idiot when I arrived.
• Now I’m hustling to follow up on some issues before we meet. Shoulda been doing this earlier.
• There’s more to patient engagement than just having access to the information.

Patients arriving unprepared might give doctors a sense that patients don’t know what’s going on. (Y’think?) It’s my responsibility to look at the notes and act on them, and honestly I’m not in that habit yet. My bad.

btw, my personal vision is for the shared medical record to be organized as a “shared issue tracker,” with dialog and entries about each item. Right now it’s a sequence of individual visit notes, unstructured, with each topic somewhere in each visit. So collecting the notes for a given topic is manual.

(On a separate note, some people freak out at my “disclosing” that I have a doctor’s appointment – and some people even wonder if it’s a HIPAA violation for me to talk about my own medical record. No, it’s my records, my info; HIPAA regulations affect custodians of my data.)

Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can.

(As I compiled the paste-ins for this post, I was struck again by how much I love blogging and social media. Just look at the great thoughts that are being spread, in mere hours!)

The post is The Trouble with Treating Patients As Consumers, by Augusta Meill and Gianna Ericson at Continuum, a design and innovation consultancy. Please read the post carefully yourself – my own first reading late last night was too quick. Here are some excerpts, then some comments already added by SPM members then I gotta run – busy day here, starting with voting in the New Hampshire primary.

The post begins:

To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat.

Two thoughts:

• Design – Continuum is a design firm, not healthcare. Design is great (healthcare needs a ton more of it!) but of course design initiatives need to be informed by a deep understanding of the dynamics of the space – especially the user’s space, the patient’s world.
• “Find themselves in the driver’s seat”: participatory medicine is about moving into the driver’s seat intentionally, not “finding ourselves there” like unwitting victims.

The unintended portrayal of “hapless patient” appears again in the cases cited:

Consider these cases: [a 61 year old woman who can’t deal with moving her data between doctors; a bariatric surgery patient who was inundated with incomprehensible information; New Jersey patients who kept calling 911 for trivial matters.

All are cases of patients who need to be shielded from anything that requires brains. For such patients, paternalism would be the natural answer. That perspective seems reinforced when they then discuss decision aids (for shared decision making, about which we’ve often written). These tools can be quite empowering to the patient, yet the post says “the intent is not to saddle the individual with the burden of the decision.”

In the Society for Participatory Medicine we feel it’s great (not a burden) for a skilled professional to explain our options and their consequences.

To be sure, many patients don’t want to be engaged in decisions, especially before they understand the reality of physicians’ unwarranted variation in practice. Unwarranted variation has been shown in decades of research to cause immense unnecessary surgery, with the resulting costs and inevitable percentage of errors and deaths after surgery that wasn’t necessary in the first place. So much for just doing what the paternal doctor recommends; this is where an informed consumer/patient can make all the difference.

But SPM members are broadening the perspective, in comments. Mine, then Trisha Torrey and another:

… the blog of the Society for Participatory Medicine. We define participatory medicine as “a movement in which networked patients shift from being mere passengers to responsible drivers of their care, and in which their providers welcome and value them as full partners.”

On the blog we have dived several times into the “I’m a consumer!” “Don’t call me a consumer!” (same with “patients”) debate – different people SPEAK those words in different contexts, and others HEAR them in different contexts. I appeal to people to please *specify* their context – which requires first being sensitive to the existence of a context.

Having said that – yes, we have a deeply dysfunctional healthcare system, in which it’s really hard for providers to get satisfaction and often really hard for patients to get what they need – but, if we’re going to wallow in that acrid reality, we might just as well drink hemlock and get it over with. In the e-patient movement we’re starting work at developing the methods of participatory medicine (very early stages) and, more important at first, raising awareness of the issues. Videos of some of my own speeches are atwww.epatientdave.com/videos.

btw, an excellent example of the dysfunction is the 61 year old you cite, whose potential efforts at autonomy and self-reliance are crippled by the archaic state of IT in most of healthcare. In finance her records follow her around whether she likes it or not; in medicine she generally couldn’t make that happen even if her life depended on it. And that’s not hyperbole. (New federal policy is expected to change that, but it will take years – and consider the implications of the fact that healthcare mightily resisted those policies.)

I humbly suggest that this piece – which is thoughtful and well reasoned – would be better titled “The trouble with expecting patients *in today’s system* to act like *fully empowered* consumers.” Too often in the conferences I attend, I see two missing realizations: today’s system is not healthy, and thus it’s not POSSIBLE for patients to be fully empowered. We who strive to be have a big, big uphill climb.  I think your post illustrates that.

And, in response to physician Omar Chugtai -

Hi, Omar – not sure what you mean by “can’t have it both ways” – if you mean “Can’t ask for power without accepting responsibility” (for knowledge and for consequences of their decisions), I couldn’t agree more. If one wants to step out from under paternal care, one has to pick up the shovel, do some work, develop new muscles, and no longer expect to be hand-fed by Mommy & Daddy.

The good news is that the literature in the related field of SDM (Shared Decision Making) shows repeatedly that when patients are fully informed about their treatment options, they tend to not choose *more* expensive treatment, but *less* invasive, less expensive treatment – and to have outcomes that are just as good, or better. Jack Wennberg’s superb book a year ago, Tracking Medicine, documents his 30+ years of work in discovering, researching, and refining unwarranted practice variation in medicine and how SDM (which includes providing decision aids – the Mayo cards are one example) can have this effect.

And yes, Omar, I’d agree the examples cited reduce patients to morons – people with zero competence, whom we must supposedly never overburden with knowledge. Later this week I hope to pull out counter-examples of patients who brilliantly supplement (as partners) the best physicians’ efforts, and in far too many cases (through social networking, online and off) even correct errors and omissions in their physicians’ knowledge.

Overnight “NW Angel” added this brilliant insight:

In those systems that are designed around the patients (like the 620,000 members of Group Health Cooperative) we don’t refer to them as either patients nor as consumers but as “members.” They literally own the system and the providers work on salary for them -

The result? They not only have a medical home model but an EHR that started with patients access, they have the highest quality and highest patient and provider satisfaction scores in the area (Washington).

So this article frames the question in the wrong way  – it isn’t a choice between patients and consumers but between people who are part of their care team and those that aren’t.

This morning SPM member and awesome advocacy expert Trisha Torrey of Every Patient’s Advocate added this, reflecting both her business experience and her broad knowledge of the patient reality: (emphasis added)

Patients cannot function effectively as consumers for at least three important reasons:

1. Because we do not control the money transaction.  If we have insurance, then the insurer defines and controls the transaction, but the transaction itself may have been driven by a greedy provider who knows he will be paid by the test or procedure. If we have a high deductible plan or no insurance, we have no real access to a specific provider’s pricing. Even if we can find a list of charges, we find out later that there were all kinds of hidden charges we knew nothing about.

2. No one ever teaches us to be patients. Studies show that when we have the information we need, we can make smart choices.  But when is that information forthcoming?  Who provides it unless we ask?  As Dave said above – many of us are more than willing to take the responsibility we need to take. But because we’ve spent a lifetime being buffeted by an opaque system, in too many cases we don’t even know the questions to ask.

Third – at the very time in our lives we are required to step up and take that responsibility for our decision making, we are highly vulnerable. Granted, some decisions are fairly simple, or have seemingly limited options to choose from. Emergency decisions are one thing – but being railroaded is another and too often, patients are railroaded without even realizing it. See reasons #1 and #2.

The key to success is not to redefine the role of the patient in an effort to jettison responsibility.  The key is to help patients become invested in the process, teaching them how to make the best decisions for themselves, for their health and their wallets, too. If we are to continue a for-profit healthcare system while trying to cut costs, we need to, at least, level the playing field.

If you have concrete examples you can post there of patients who did excel – against odds in an unsupportive system, with great results – please do post them there.

But please don’t attack the writers – like Trisha and “NW Angel,” shed light. Remember that there was a day when you were new to healthcare and especially the patient experience.

Thanks to Twitter cancer friend @Chaos2Clarity for the tip last night.

The worst part was THIS WAS MY OWN HOSPITAL where I had worked for the past 8 years, the last 3 as a section chief. I never ask for special treatment, and I was not going to get any special treatment — which meant I was going wrestle with The System like anyone else.

He also provides a great learned analysis of the problems he encountered, separating “system issues” from “people issues.”

Funny how his mood seems to match what was said of medical mural activist Regina Holliday, whose husband Fred’s hospital called her “Little Miss Type A personality” in a similar situation. Except Fred was dying.

Give us our damned data. Dammit!

Thanks to @tbtam’s @GrandRounds “Twitter edition” this week. A highly skimmable new format for medblogger Grand Rounds!

• 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.

What a rocket ride it’s been for Xeni. Tuesday morning we reported on the BoingBoing co-editor’s unexpected breast cancer diagnosis 12/9, and her odyssey reading her scan data. (CDs didn’t come with software; in a few hours with Twitter help she’d downloaded OsiriX and was pushing her way through it.) Then she discovered her bone scan included a distinctly male body part, because (as the comments told later), the doc’s system has a crappy UI, making it easy to mix up the images.

Nice, huh? But she did the right thing: she’s engaged in it, she’s doing the “gimme my damn data” thing, and she got it straightened out.

Her first MRI the other day was a horrible experience: she was given no warning of how loud and claustrophobic it would be, and the technician empathetically scolded her for not being a good patient. Sweet. This led to rapid crowdsourcing of a “#firstMRI project” to help people learn in advance what to expect. (See yesterday’s post here.) I suspect this is gonna be a big deal in 2012.

Well, for her second MRI Xeni took her business elsewhere – found a much better machine and nicer people. By now, in four days Xeni has gone from being a total newbie to a totally empowered data-toting e-patient. Here’s today’s harvest from her tweets. (This is aggregated using Storify, btw, which is a pretttty danged slick tool for harvesting content from all over creation, including tweets.)

Would anyone out there like to say, “Patients, stay off the internet”?

Here’s hoping Xeni’s fame and following will create a big honkin’ wave of newly engaged, empowered patients out there. Let’s move this movement out beyond our healthcare circles – take it to the streets!

This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does.

A famous blogger/journalist is discovering healthcare the hard way. At a time when she says she’s quite upset, she had a hard time Sunday opening the scan CDs her doctors gave her; she got help for that online. Then a few hours ago she tweeted that her doctors got some scan data mixed up, and it’s not pleasant to think of the implications for her “Q of service.”

Background

We’re known on this blog, and in the Society for Participatory Medicine, for advocating “Gimme My Damn Data.” We’ve advocated for it in Washington, we write about medical records often, and Monday night we posted the latest about this movement in the OpenNotes project and the VA’s patient health portal.

One important reason is to let patients be a second set of eyes, to check the quality – accuracy – of the data. Some doctors get huffy about it, saying it’s their business, not ours. Some say we’ll freak out if we see it. But in this movement, we say “Gimme My Damn Data,” which was the title of my first keynote speech, in 2009. (It’s got traction: googling that phrase gives zillions of hits.)

Our first big story about radiology data (scans) was in 2008, when Jon Lebkowsky wrote that internet visionary Doc Searls had a problem with his scan data; then we posted about DICOM viewers Doc might have found, given less time pressure. This October we noted that cloud scan storage is coming along.

But the street reality is that most of the world doesn’t know this – even the cognoscenti. This story is about how one of the hippest journos of our time, Xeni, discovered and is dealing with a cancer diagnosis, and with life as a patient trying to be engaged in her care.

About Xeni

To put this in context, you need to know who Xeni is. Wikipedia:

“…an American weblogger, digital media commentator, and tech culture journalist. She is known for her position as co-editor of the collaborative weblog Boing Boing, as a contributor to Wired magazine and Wired News, and as a correspondent for the National Public Radio show Day to Day. She has also worked as a guest technology news commentator for television networks such as CNN, Fox News, MSNBC and ABC.”

In short, this is no slouch of an observer.

Photo: BoingBoing

Her diagnosis

This month, out of nowhere, Xeni found out she has breast cancer. She was live-tweeting and instagr.am’ing [right] her first mammogram when the news hit out of nowhere, and she wrote a powerful, dizzying post about the experience. Having been through a similar discovery myself, when I read hers I felt: “Sister. I know what you mean.”

(Anyone who says “We’re all patients someday” has no idea until they’ve had this moment, where they realize their ass is on the line, now.)

SPM Secretary Deb Linton, self-declared fangirl of Xeni, posted  her reaction on the Health 2.0 blog.

Xeni gets her bytes on:

Well, this Sunday Xeni decided to plunge into her scan data. She’d gotten three CDs from radiology, but they apparently didn’t come with a built-in viewer. (The ones from my hospital come with a horrible 1995-looking viewer, but at least it’s a viewer, if you can figure it out.) So she went to where everyone goes these days when they don’t get answers from medical professionals: social media, which in turn sent her to Wikipedia and open source software.

Tonight friend Judson Dunn (@JudsonDunn) tweeted

@ePatientDave are you following @xeni? unfortunately a new high profile epatient, but already discovered an error looking at her radiology.

(e-Patient? Yes: a totally online patient; empowered and engaged – her post describes researching which mammography shop to use; and here she is, becoming equipped and enabled with her scan data.)

Indeed, Sunday night she live-tweeted trying to open the files. Here’s a transcript. (If you don’t know Twitter or other slang, don’t worry; you’ll get the drift.)

And now the tweets:

Sunday night

@Xeni: Trying to jailbreak my mammogram data files. They require proprietary GE workstation. Should be easiest call for hacker help ever. #boobs

@Xeni: So, seriously, if anyone knows how to open “MammoWorkstation” files from the proprietary GE healthcare format, @ a girl. Thanks. #boobs

@Somebadideas: @xeni did you ask technician if they can be saved in other file formats for other viewers? i had to do that once with MRI

@Xeni: @somebadideas calling tomorrow to do that. “Ah, yes, can you give me this mammo data in an open-source video codec please? OK ogg vorbis?”

@emp: @xeni LOL. shouldn’t be too difficult if they’re following the DICOM standard for mammography data. en.wikipedia.org/wiki/DICOM

@Xeni: @emp @robschmit thanks. That’s a start.

…

@Xeni: @coreplane they look like unix executables. I’m browsing through lots of oddly-broken-up files on a CD.

@Fracture98: @xeni Sorry if this is spammy, but in case you missed it: open source viewer: osirix-viewer.com

@Xeni: @Fracture98 thanks, peeping.

…

@Xeni: Whoah. I got some of the other scans to open. I am now looking at the equivalent of a 24-frame animated gif of my own beating heart.

@coreplane: @xeni Sounds like you’re making progress. You could try the ‘convert’ command just to see if it can make something of the files.

@Xeni: @coreplane yeah, I’m looking at 5 sets of files. The mammo’s still a mystery, totally different format. Will try that.

@deanputney: @xeni Oh my god, that sounds amazing.

@Xeni: @deanputney it’s actually blowing my mind. for real. I can hardly bear to look at it.

@deanputney: @xeni Send it here, I’ll look at it for you.

@Xeni: @deanputney will do.

@deanputney: @xeni I am glad I can relieve you of this burden, friend. I have developed a powerful resistance to mind-blowing animated GIFs.

@Xeni: @deanputney the bone scan one is OMFG. It’s like dividing you into a million prosciutto slices. Basically animated GIF output.

@Xeni: @justinsb thanks! cc @deanputney …dicom-viewer.e-dicom-com.qarchive.org

@chaircrusher: @deanputney @xeni btw slicer & osirix examples of open source research software paid for with yr tax dollars. bargain at twice the price.

@Xeni: @chaircrusher thanks. cc @deanputney slicer.org/slicerWiki/ind…

@deanputney@chaircrusher @xeni Wow! What initiative/govt department paid for these?

@Xeni: @deanputney thanks for the help.

@Xeni: Thanks for help, folks. Managed to open 4 of 5 scan sets (bone, CT, etc) w Osirix. But GE MammoWorkstation data still perplexing. Goodnight!

@Xeni: Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.

@Xeni: And this CT scan makes my butt look big.

@YellowJKT: @xeni i like big scans and i cannot lie. you other radiologists cannot deny!  Retweeted by xeni

—16 hour overnight break, then the discovery Monday:—

@Xeni: All: thanks for the kind replies about how to open mammogram and various medical imaging files. OsiriX FTW! I’m all set.

@Xeni: @collectSPACE hey pal! thanks for pinging BB about your AMAZING pix today. I was out of pocket today, glad you got through! cc @deanputney

@Xeni: So I figure out how to open my bone scan data. I look. WTF. What’s that dick-shaped ghost-shadow thing—it looks like I have a penis! [1/2]

@Xeni: I agonize about it all day. Do I have a hidden penis hanging out in my leg? Can female parts or colons look dick-shaped on bone scans? 2/3

@Xeni: I call a hacker pal. “That, Xeni, is a dick.” Look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS. 3/3

@Xeni: I don’t even know how I should feel. Today was a day of other new hard news, a Big Day in the fight. And—I have some other guy’s dickscan.

@Xeni: Called the clinic, they’re not open. Now calling an attorney to make sure I handle it appropriately. I don’t want anyone else’s data!

@Xeni: Any legal experts out there care to share advice on what I do, now that I’ve realized I’m in possession of someone else’s data?

@jffcrmr: @xeni Notify agency in charge of overseeing who you got data from, and party giving you the data. Do not contact party whose data you have.

@Xeni: @jffcrmr will do so as soon as they open in the AM. I tried phoning the clinic earlier.

@Xeni: So, the other thing that arises from realizing you’ve been given someone else’s medical imaging data is: does someone else have mine?

@pourmecoffee: @xeni I take it this means you don’t want to be sent pictures of that body part in general. Asking for a friend.

@Xeni: @pourmecoffee LOL

@Xeni: I spoke to several loved ones today re: how upset I was to see this mystery “ghost penis” on my bone scan (on top of my own mortal worries).

@Xeni: Big thanks to @tbias for helping me use deductive reasoning, hacker sleuthery, and occcam’s razor to uncover truth. #notmydickinthebonescan

@jose602: @xeni If dude’s name is mentioned in the metadata, is it alphabetically close to yours? Or was the scan on or near the date yours was done?

@Xeni: @jose602 I’m not going to look at the data again, only viewed accidentally, so I don’t know. :)

@deanputney: @xeni I really want to think that this tweet is the result of @tbias saying “Yup. That’s a dick.”

@Xeni: @deanputney @tbias bingo. that is exactly what he said.

@bashert54: @xeni most likely someone else does have your medical data.

@Xeni: @bashert54 horrified by that. Not even because it’d upset me that much if it were made public? But makes me lose faith in Q of service.

…

@Random_Tangent: @xeni mi madre the doctor is stumped. Says talking to ‘em is the only step she can think of. Was it a disc of your data AND ghost dong?

@Xeni: @Random_Tangent 3 CDs given to me, with radiologist’s written analysis. 1 of 3 CDs was Mr. Ghost Dick’s. Other CDs, correctly mine.

@minus1cjb: @xeni were all CDs labelled with your name?

@Xeni:  @minus1cjb They sure were. Only a careful inspection of the metadata revealed the truth.

@Xeni:  @Random_Tangent terrifies me that maybe the analysis I got (which said no bone metastasis!) might have been wrong. :-(

@Xeni: Forgive me, folks, if some of my previous tweets were not up to usual standard of logic. Received some shocks on my own case today. Rattled.

@Xeni: @Random_Tangent 3 scans were MUGA, CT, bone scan. The bone scan was Mr. G-D’s. The MUGA and CT were mine. I THINK.

@Xeni: I got some news today which frightened me. We’ll know more soon. But I am relieved to know I don’t have a secret penis hiding in my leg.

@warandpeace: @xeni As a not-attorney, I advise you to send the scans back with “VISIBLE PENIS” photoshopped overtop in Impact Bold.

@Xeni: @warandpeace LOL. I want to image macro these so bad, but yeah. Not even opening the files again.

@Xeni: My fear now: did cancer docs evaluating my case look at these scans (belonging to Some Guy), analyze my case on his data? I wanna throw up.

@Xeni: The forensics @tbias used: 1) “Do you have metal fillings?” 2)”Hips are too close for a woman” 3)”Yep, that’s a dick. I know, I have one.”

@Xeni: So, if anyone ever asks why having a copy of your medical data, and viewing it, is a good thing? You may now refer them to #ghostpenis tale.

————

I’m reminded of my 2003 chest x-ray: “53 year old woman.” At least in that case it was the right name on the scan – just the wrong boobage.

Items of note:

• Difficulty of reading her data
• Usefulness of the internet
• Yes, she was grossed out at first.
• It didn’t stop her.
• Lack of reliable workflow – i.e., having her name put on somebody else’s disk. (I had to type that word carefully.)
• Labeling problems happen all the time in laboratories – books like Mark Graban’s “Lean Hospitals” detail the many efforts to ensure that test tubes don’t get mislabeled, i.e. “lab results got mixed up.” It happens.
• The power of social media to share tools, experiences, and information like this. Without raising medical costs.
• The potential impact on patients – especially cancer patients – when data is mismanaged, and when it’s hidden from the patient.

I say: Let patients help heal healthcare. Give us our data – and make it easy to read.

Anything else? Discuss.

• OpenNotes article: “Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead” (Walker et al) – text, PDF
• MyHealtheVet article: “Patient Interest in Sharing Personal Health Record Information: A Web-Based Survey” – PDF
• Editorial: “Access to the Medical Record for Patients and Involved Providers: Transparency Through Electronic Tools” - PDF

We’ve written several times about the OpenNotes study, in which patients are given access to their physicians’ visit notes. Will the world come to an end? Will patients deluge their doctors with scared and confused questions? e-Patients think not, but such concerns have been cited as justification for keeping the records hidden.

The solution to rumors is data.

We’ve reached the end of this year-long study, funded by Robert Wood Johnson’s Pioneer Portfolio. The number-crunching has begun, and today we’re seeing the first published results: the baseline measurements of expectations and attitudes, before the access began.

At 5 pm ET today the Annals of Internal Medicine released

• an article about the OpenNotes baseline data
• a related article about data sharing by users (patients) of the Veterans Affairs (VA) PHR system, My HealtheVet. (SPM board member Sue Woods is an author on the VA paper.)
• an editorial about the entire issue of

As we said in November about OpenNotes, (emphasis added)

We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care. … The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons. … Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work…

I hope to post more information on these “before” numbers. In the spring we’ll see the “after” numbers – what actually happened during the year of the study.

Since the time that the Human Genome Project was completed in 2003, gene sequencing technology has moved rapidly, becoming less expensive and therefore more available. In the very near future, the cost of doing a whole genome sequencing will be under $1,000 and affordable to many individuals in the mainstream. What this means is that physicians will be able to tailor medical treatment to the individual characteristics of each patient, based on a unique molecular and genetic profile that indicates whether or not they are susceptible to certain diseases.

This will help physicians determine which medical treatments will be safe and effective for each of us and which might be contraindicated. It means that individuals will have to become even more engaged in their health care, because they will be faced with the dilemma of having to make decisions about their lifestyles, based on knowledge about what they might be physically dealing with as they age. It is in the nature of humans to want knowledge and information, especially about themselves. Ultimately many individuals, who can afford to, will make the decision to do whole gene sequencing.

There are already studies where findings based on genetic variations are initiating changes in options and treatment approaches. For example, researchers, using gene sequencing, have learned that not only does lung cancer vary in patients based on the specific genes that contribute to its onset and progression, but that different individuals with the same lung cancer respond to different drug treatments, also based on their genetic differences. Put into practice, this approach has resulted in more positive outcomes.

In cardiac disease as well, genetic tests which detect variations in the way people may be at risk of excessive bleeding, and other genetic tests that determine how people metabolize the drug Coumadin (warfarin) which is used to prevent blood clots, determine how the drug is administered to different individuals, and in what dosage.

Eventually gene sequencing will spread throughout the population. A study is underway at Inova Health Systems of 500 families whose newborns’ medical history includes a preterm whole genome sequencing to identify molecular markers and genetic differences. The goal of the study is to learn more about disease prevention and detection as the newborns mature.

While this is a tiny segment of the newborn population, there will be a time (perhaps in 25 years, or less) when all babies will have their genome sequenced and the results preserved as part of their digital health record. This genetic information will become a standard element of a person’s medical history, and will follow that individual through life. It will determine many aspects of the individual’s medical treatment.

There are many hurdles and challenges before whole genome sequencing will become ubiquitous. There are issues of bringing down the cost of whole genome sequencing so that it is affordable and perhaps even covered by medical insurance. There is a greater challenge of how to deal with the massive amounts of data that result from whole genome sequencing including who will pay for the analysis of the data, how will the data be stored and regulated and how privacy of health information will be attained.

Personalized medicine forces all of us to be more participatory in our health care because decisions about whether or not to opt for genome sequencing is one that we have to make for ourselves. We are also forced to make life altering decisions, based on the data, regarding:

• Whether we are going to address a potential disease that may be in our genetic markers, in advance of the onset of the disease;
• What we will do with this information;
• How the genetic information we receive might influence our decision to have children; and
• How to protect our children regarding what is revealed in their genetic history.

Personalized medicine is a revolutionary trend that deserves the attention of every individual who is engaged and educated about health care because the benefits are huge and the responsibilities, both on the part of the individual and society, to use this information for positive medical advancement and better personal outcomes, are daunting.

• The late 1960s introduction of Larry Weed, MD’s Problem-Oriented Medical Record, “…aiming to generate a record that would allow a third party to independently verify the diagnosis. Prior to this, a doctor only recorded his diagnoses and the treatment provided.” Jeeze.  (We posted about it recently.)
• Late 1970s: the inception of VistA, the VA’s system. As recounted in Phil Longman’s great little book Best Care Anywhere, this system was developed to suit the needs of its users, not accountants. Lots of people like to bitch about it, it’s still in use today… and it was the first system to support the Blue Button “gimme my data” initiative. (I loved that book, and blogged about it three years ago.)

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

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

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

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

A taste of the interview:

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

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

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

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

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

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

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

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

And this:

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

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

And:

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

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

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

This time, House, M.D. fans, it was lupus. The article “Evidence-Based Medicine in the EMR Era” published in the Nov. 10 issue of the New England Journal of Medicine might have read like a House television script, but it was a real-life glimpse of what the most optimistic health IT advocates are hoping will become commonplace in U.S. health care: Mining EHR data to arrive at treatment decisions.

In a Health IT Exchange piece (on TechTarget) EHR data spurs real-time evidence-based medicine, Don Fluckinger summarizes (and dramatizes, accurately) this early specimen of care being transformed – beyond the literature – by looking at past records. Faced with a 13 year old lupus patient with a complex problem (see article for details)…

In four hours, they did a retrospective study of similar patients in the hospital’s data warehouse…, and decided to move ahead with the treatment based on the previous results of 98 [similar patients] … The authors said they will never know if they made the “correct” decision, but they did know that — in absence of randomized trial research to support their decision — they acted on the evidence of the best data available, coupled with their experience.

“Our case is but one example of a situation in which the existing literature is insufficient to guide the clinical care of a patient,” the authors wrote. …

What are we waiting for, people??  Imagine if doctors were able to access all of our records, or at least those of us who opt in, so your doctors (your kids’ doctors, your mom’s) can go beyond the limitations of peer reviewed literature – and provide better care. Make better use of their training and experience.

So often we’re all hampered because the ideal information doesn’t exist. When the information does exist, isn’t it a tragedy to limit the quality of care because the frickin’ data is isolated in silos?? Let’s connect ‘em! Health information exchange! Aggregate! Summarize! Analyze!

Let’s get to work! Data liberación, as Todd says!

Congrats to these Stanford docs – and thanks yet again to @ICMCC for spotlighting this in their excellent daily newsletter. This was in their 10 Most Read for the week of 11/13.

p.s. And now let’s see House welcome contributions from engaged patients and families, bringing in the results of their research!

[Update 11/25: the data visualization that Ken created is so extraordinary that we're adding it here, four days after the original post. LOOK how he helped his physicians "get" his medical history! What an empowered, thoughtful, creative, participatory patient. - e-Patient Dave]

Dave deBronkart’s TED talk inspired me. I went on a “damn data” collection mission by ordering data from all the places where my Crohn’s disease had caught up to me. I ordered medical records, medical bills, insurance information, and pharmacy data. It’s a collection worth about 13 years, 600 pages, and came from nearly 20 sources. Impressive, no? But it’s not having the data that’s important, it’s what you do with it that matters.

My ambition was to condense that epic volume into something useful. I love infographics. They’re quick and clear, they’re memorable and they tell a story. Another great attribute of having something visual is that you can see your data under a new light. It becomes a narrative you can step back from. Having a different perspective can lend itself to insights. The first infographic I created is called “My Life On Drugs.” Take a look: http://bit.ly/szDvUs (and above). It’s a summary of all the drugs I had to take each year. I counted everything even if it was given to me once. It makes a story.

There’s dramatically more information there than meets the eye. Patterns emerge. I’ll give a few examples.

You can see I have a history of inflammatory diseases — first was eczema, then asthma, and now Crohn’s disease. When my asthma was developing my skin was clearing up and when my Crohn’s was developing my asthma was clearing up. You can clearly see this transition just by reading from left to right. Perhaps they’re related?

There’s another useful discovery — it’s the inclusion of the Vitamin B-12 injections. As soon as B-12 was prescribed I no longer needed depression medication. I didn’t even have depression, I had a vitamin deficiency. How often does this mistake happen? It’s a horrid oversight and I’m sure I’m not the only victim.

The last observation I’ll make is that the combination of Remicade and azathioprine lost its efficacy and it landed me in more trouble than just before I was diagnosed — which I assure you was an awful lot of trouble. And then there’s a big drop in the number of drugs I’ve had to take post surgery. In retrospect I’d have chosen to avoid the drugs and opt for surgery back in 2001. It’s not the conventional medical practice but it’s useful to see a case study where drugs are not an optimal solution.

Along the way of creating this first infographic I’ve had to learn a lot about data requests, organization, and trying to make my health records digital. It’s been tedious, fun, and frustrating but I now have my own Electronic Health Record!

In addition to the infographic I’ve also put together a how-to manual of what I’ve done so far. My quest isn’t complete but I feel like I’ve got enough to share. If you like, visit diyehr.com to see if there’s anything you might benefit from.

See the S4PM comment letter.

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

Hear hear! That’s from a new commentary published Monday in Modern Healthcare about the OpenNotes project, in which patients have full access to their doctor’s visit notes. We’ve written about it numerous times, dating back to our June 2010 “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? (Check out the Seinfeld clip on that post, in which Elaine tries to read her chart and gets marked “difficult” by the doctor!)

OpenNotes is funded by Robert Wood Johnson Foundation’s Pioneer Portfolio, which likes to study the frontiers, the real leading edge of medicine, to anticipate the future. It was a Pioneer Portfolio grant that funded our e-Patient White Paper, and OpenNotes seems a natural cousin, as it explores what happens when patients become more engaged as partners in care.

The full results of the study haven’t been published yet, but the principal investigators are starting to speak. In the Modern Healthcare commentary, principal investigators Dr. Tom Delbanco and Jan Walker, RN, MBA say: (Emphasis added)

We urge the government, other payers, clinicians and consumers to move even further forward. If consumers are to become truly active partners in their own healthcare, they should be able to retrieve their personal medical information readily, including their doctors’ notes. As doctors and hospitals increasingly use information technologies to embrace transparency and information-sharing, let’s move toward “open notes” and adopt them proactively and eagerly, rather than with mumbling and grumbling.

They continue:

As a primary-care doctor with 40 years of experience with patients, teaching and studying health services, and as a nurse who promotes the use of information technology to improve care, we understand that engaging patients actively in promoting health and managing illness is a long-standing but elusive goal of healthcare. We also believe that giving patients access to their own medical notes may help them manage their care more effectively and join in efforts to detect and prevent medical errors.

Importantly, OpenNotes was designed to include an urban academic setting (Beth Israel Deaconess in Boston), a rural setting (Geisinger in Pennsylvania), and a safety net population (Harborview, Seattle). This will allow detecting which outcomes and attitudes are the same across settings and which ones vary.

A hint of great news to come, for lovers of participatory medicine:

We are learning that patients are overwhelmingly interested in gaining rapid access to their notes and that many doctors appreciate the potential for open records to improve care. … The enthusiasm of patients appears to cut across all lines of age, health status and education. And while many doctors turned down our invitation to join the one-year project, citing fears that their notes would adversely affect their already onerous work flow and frighten or confuse patients, only one doctor who signed up for the study later dropped out, and that was for personal reasons. … Moreover, hallway conversations indicate that doctors have not experienced significant disruptions to their work…

That’s all I can quote here, due to copyright regulations. But clearly the authors are excited, and so am I. As my own physician Dr. Danny Sands has said, “How can patients participate if they can’t see what I see?”

Can’t wait to see the detailed results, as they unfold in journal articles yet to come.

(btw, the full article is behind a paywall, dagnabbit! Isn’t this supposed to be about patients seeing what the doctors see?? Last year’s article in the Annals of Internal Medicine was open access – can Modern Healthcare please do the same?)

This is not a new issue here: three years ago our Jon Lebkowsky wrote here about how internet visionary Doc Searls had a serious medical mishap, during which his ability to make a crucial decision was impaired because he couldn’t share his scans with another doctor.

Now, the Radiology Society of North America (RSNA) has begun what appears to be a real consumer-based image sharing project. From the magazine Diagnostic Imaging:

RSNA Image Share, the network designed to help patients take control of their medical images and reports, has enrolled its first patients, Radiological Society of North America officials said.

The network was designed to facilitate access to imaging exams for patients and physicians, potentially reducing unnecessary examinations, minimizing patient radiation exposure, and enabling better informed medical decisions.

The full article lists the five hospitals that are participating in the project.

Separate from this, I know of at least three systems that already let you upload your images -

• iCloud WebPACS
• HealthVault (3 minute YouTube on how to do it)
• Merge Healthcare’s Project Honeycomb (newly announced, not yet available)

Anybody know of any others? Comment below. Any personal experiences?

A personal note:

My own hospital gives me – free – a CD of any radiology image I want. That’s awesome. BUT, it’s not the full resolution in their system, and the software they provide is pretty stinky: it looks like something developed in 1997 – hard to figure out, and clunky to use when you do figure it out.

Why should the software be so out of date? Because we’ve never had the ability to (easily) use other software. I’ll predict that when we really can have our data – our families’ scans – there will be a ton of new software, to help us see the data.

A guru’s view:

Fittingly, this brings us back to Doc Searls, who for years has been advocating VRM: Vendor Relationship Management, in which the consumer (you) is in control of relationships. It’s the opposite of CRM (customer relationship management), in which the vendor calls the shots. You can see why, after his encounter, he wrote about the patient as the point of integration for the data.

A glimpse of the new ecosystem

Personally, I can almost taste it. It’s not here yet, but as a lot of data starts to become free – when there are 100,000 consumers who want better software – developers will find a market for good software, and doctors will have a competitive reason to use it. For the first time a real consumer-based ecosystem will start to arise, and the business of healthcare will veer toward the patient. And that’s a good thing.

Give a Scan, a project of the non-profit Lung Cancer Alliance, allows lung cancer patients to share their clinical data with the goal of assisting researchers in improving early detection and treatment. The site was launched in June, 2010 and includes 15 datasets to date.

Reader David Clunie, who mentioned Give a Scan in his comment, has also created a prototype called the Patient Contributed Image Repository, where patients can contribute their x-rays, CT scans, and other images. The site hasn’t formally launched, but it is fully functional and offers pointers for others interested in creating similar sites. He “struggled with the concept of the contributor retaining control versus relinquishing it, and came to the conclusion that a donation (irrevocable) to the public domain was a viable approach, even if it might put some folks off contributing.”