Note: This is two posts in one — scroll down to read Regina Holliday’s point of view.

From Susannah Fox:

For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into the spotlight and take a twirl. That’s how I see hashtags – spotlights on circles of people, talking about certain ideas. Create a hashtag and you call the tune. Add a hashtag to your tweet and you join the circle.

Over the last few days #whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.

It started when I tweeted a quote from Peter Margolis of the C3N Project:

“What if it was as easy to find out how to…find a medicine that’s right for you as it is to order exactly the book you want?” #c3n

His colleague Michael Seid tweeted back:

“new hashtag? #whatifhc what if everyone had the means & motivation to be part of the solution?”

I tweeted a few examples and the dancers began to whirl:

@produceconsume: #Whatifhc was focused on health, not just on care?

@GoalsGamified: What if more Americans accepted that shopping at farmers market costs less than food courts in the long term. #preventionisthrift #whatifhc

@cloudspark: what if we rewarded docs for choosing primary/family/internal medicine instead of specialties? #whatifhc

@klimaz: #whatifhc people actually took the advice of public health: stop smoking, get outside, eat fresh food, reconnect with friends…

@swertheimer: What if hospital bills showed actual costs? #whatifhc

@meganhatch: What if looking at my medical information and records were as easy as checking my email? #whatifhc

But a couple of people looked at #whatifhc and saw #wtfhc (“What the f… health care?”) in the jumble of letters. They heard a darker drumbeat, from a nightmare, not a dream.

@ReginaHolliday: What if your husband was dying and they would not let you see a medical record w/out paying 73 cents per page? #wtfhc

And the dance continued, spinning out in two directions now.

From Regina Holliday:

Looking back on the memory of

The dance we shared beneath the stars above

For a moment all the world was right

How could I have known you’d ever say goodbye

And now I’m glad I didn’t know

The way it all would end the way it all would go

Our lives are better left to chance I could have missed the pain

But I’d of had to miss the dance.

-Garth Brooks, The Dance

Susannah is right. Twitter is a dance. We often stay wallflowers surrounding the space until a new song is played. A hashtag catches our eye allowing us the chance to meet new partners or reunite with old ones. When I saw #Whatifhc, my dyslexic mind and injured soul saw #Wtfhc. I blushed to use this tag, as I am not one to curse. It made me uncomfortable.  What would people think?

I suppose a lot of things in health care are uncomfortable.

It is uncomfortable to lie on bedsores, whist in constant pain.  It is uncomfortable to have a catheter placed.  It is uncomfortable to be woken in the middle of the night because staff members think that is the best time to check your vitals.

It is uncomfortable to gasp for breath while fluid to fills your lungs as you lay dying.

I might have lost a few followers when I tweeted with this tag.  I seemed the angry patient.  I made them uncomfortable.

I paint about this discomfort frequently.  When you look upon The Walking Gallery you will see a great deal of #Whatifhc jackets.  Susannah’s jacket is mostly a #Whatifhc interpretation.  They are beautiful and hopeful, but you will see #Wtfhc jackets too.

Perhaps when I post a jacket, I shall use these tags.  Labeling each jacket with darkness and light.

What if a day came when I only had to use just one tag? #whatifhc

* * *

What’s your health care dream? What’s your nightmare? Please add it in the comments below or join the dance on Twitter.

The iPhone and iPad are changing the world of medical devices as we know it.

Thanks to their familiar interface, Web connectivity, and powerful
processing capabilities, with the right app and plug-in these iOS
devices can work as super smart medical devices that make sharing as
easy as the push of a touchscreen button. Consumers can now access
increasingly high-quality medical devices, making it easy to be more
actively engaged in their own health. And home and rural care givers
can benefit from the portability and versatility of iPad and iPhone
based devices.

Below I’ll discuss three examples of powerful iOS medical devices I’ve
found that already exist.

1) The Withings Blood Pressure Monitor

French company Withings
[http://www.withings.com/en/bloodpressuremonitor] developed this blood
pressure monitor that features an app and a cuff that fits most
average-sized people. Accurate data on your blood pressure can help
you monitor hypertension, which can lead to serious consequences for
your heart, brain and kidney. The Withings monitor can even work with
an iPod Touch, and runs at $129. You can use the device to share your
data with your doctor.

2) ECEM Pulse Oximeter

This device isn’t yet available to the masses, but given its utility I
imagine it will be soon. It features a small clip that attaches to
your fingertip. The clip beams a light through your fingertip to a
receiver on the opposite side; the amount of light received is used to
determine how much oxygen is saturated in your blood. Developed by the
Electrical and Computer Engineering in Medicine
[http://www.phoneoximeter.org/] research group together with the
Pediatric Anesthesia Research Team at the University of British
Columbia, it was originally created to help make anesthesia care safer
in the developing world, but can also be useful to patients with heart
of lung problems such as emphysema.

3) iBGStar Glucose Meter

From Sanofi-Aventis comes this glucose meter app and plug-in. The
glucose meter is a well-known device to anyone with diabetes. Today,
diabetics test blood sugar with needles and a clunky kit; the iBGStar
[http://www.ibgstar.us/] offers a small add-on to the iPhone that’s
said to give better, more accurate results. Plus, getting your data on
your iPhone means you can share it easily, and you can get reminders
on your iPhone when it’s time for another check.

For more discussion of the benefits of these iPhone and iPad based
devices, plus commentary on two more devices not discussed here and
commentary from an expert on medical devices, visit the Software
Advice blog for the original article.

4) iPhoneECG Electrocardiogram

This device has a simple setup: just snap a plastic case onto the back
of your iPhone and you’re ready to go. The case has two electrodes in
the back that, when you press the phone against bare skin of your
thumbs or–for a better reading–your chest, can measure and track
your pulse. It was built by Alivecor [http://alivecor.com/] and Oregon
Scientific. It’s not perfect, since it admittedly gathers a limited
amount of data on your heartbeat, meaning it can’t quite compete
against a real ECG. But for e-patients looking to get a good look at
their heartbeat or caregivers looking for a quick diagnostic, it might
just do the trick.

5) MobiUS SP1 Ultrasound Imaging Device

OK, with a price tag of around $7,500, it’s still not quite a device
for the masses. But this ultrasound peripheral and program still runs
lots cheaper than traditional machines, and does serve as a step in
the road to democratizing access to patient information. Though the
device, from Mobisante [http://www.mobisante.com/], doesn’t run on iOS
yet, I predict it will soon, since one major obstacle–the lack of a
USB port in an iPad or an iPhone–will be eliminated in the latest
upgrade to the iPad coming out soon. Wi-Fi and cell connectivity mean
images can be shared quickly from the device, meaning caregivers might
be able to more easily, frequently, or quickly share data with
patients about their joey in the pouch.

ABIM is the American Board of Internal Medicine, one of the two U.S. organizations that certifies internal medicine physicians. Their The ABIM Foundation’s Medical Professionalism blog just posted a new item, ‘Extremist Proposal Shocks the Medical Establishment. Here’s the lead: (caps & !! added)

I suspect many were shocked, even disturbed, upon reading the article, ”Professionalism, the Invisible Hand, and a Necessary Reconfiguration of Medical Education” by distinguished professor of medical education at Mayo Clinic, Fred Hafferty, and his two colleagues, Drs. Brennan and Pawlina. .. the authors call for all medical students to achieve competency in THE ECONOMICS OF CARE(!!) prior to seeing their first patients.(!!)

“There will be no traditional ‘patient care’ contact until students are fully able to decode and explain the highly cryptic billing statements that encumber patients. As students enter the bio-medical side of their training, patient meetings will begin to add explanations of diagnosis and treatment options to those of cost.”…

Bonus: the article they’re talking about is open access – free to all. Makes sense, eh? If we want patients / consumers to be engaged in healing healthcare, we/they need to be involved in the discussion, no?

Another takeaway: don’t fault clinicians for being uninformed about something, if nobody ever trained them to think that way. (Do you like it if somebody criticizes you for something you were never taught?)

Sarah is ahead of most of us. Only in the past six months did I begin to comprehend what she was talking about in her “revolution” post three years ago, cited below. So consider that what she says here will quite likely be accepted some years into the future, and we would do well to listen. (e-Patient Dave)

Here in London, ‘peerage’ has a special meaning: as the Free Dictionary puts it, “the rank, title, or jurisdiction of a peer or peeress; a duchy, marquisate, county, viscountcy, or barony.” So when I ran across a recent blog post about Peerage of Science (PoS) – a new peer review invention started in Finland by scientists, for scientists – I thought perhaps they were using the word naively, or tongue-in-cheek. But having now read the PoS-About page, it seems the service may represent a genuflection before that sovereignty which has ruled the research kingdom for the past century.

It was the subtitle of the Nature Network blog post by ecologist Mike Fowler Peerage of Science: A Publishing Revolution?  that caught my attention, as it hearkened back to a piece I wrote for e-Patients.net – Participatory Medicine as Revolution! Think Critically! Communicate! – some while ago. I’m on permanent watch for the “R” word, and though I’ve been on the sidelines of PM for a couple of years, I’m working with a true revolutionary of scientific publishing, Vitek Tracz, to help build his post-publication peer review (PPPR) service, Faculty of 1000. Arguably the originator of the open access publishing platform, Vitek believes there should be no gatekeepers for the deposition of research, and that all refereeing, debating, and revisions should be done transparently after publication. More about this in a minute.

What does the machinery of peer review have to do with participatory medicine (PM), and why am I disappointed in the newly announced PoS that some consider to be revolutionary?  To begin with, many argue that it’s not the concept of peer review that’s holding back scientific discovery, but rather its unrivaled status as the backbone and pre-requisite of journal publishing.  One of the best critiques of the current system was written for the Journal of Participatory Medicine, sister of this blog.  In its inaugural issue Richard Smith, MD, former editor of the British Medical Journal, summarized his observations:

After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value. Its downside is much more obvious to me than its upside, and the evidence we have on peer review tends to support that jaundiced view.

Not only does the current system delay valuable findings for months or even years, but it can prevent discoveries from ever seeing the light of day. Furthermore, studies have been conducted demonstrating that referees routinely miss serious errors. And in an editorial titled Is Peer Review Censorship?, Infection and Immunity editors Arturo Casadevall and Ferric C. Fang wrote:

If editors are overzealous in screening manuscripts for perceived newsworthiness or consistency with prevailing dogma, there is a danger of blurring the distinction between peer review and censorship. If a reviewer obstructs the publication of a manuscript because it competes with or questions his or her own work, there is an ethical dimension as well.

Yet worse than the delays, worse than the errors that creep through, and worse than censorship and obstruction of competition, is how pre-publication peer review limits what’s available to other researchers to build upon, and to all citizens, including patients who are on the front line, to broaden their perspectives and contribute to the armamentarium. Neuroscientist Bjoern Brembs states it vividly in his blog post Scientific Discoveries are Like Orgasms: You Can’t Have a Bad One. In today’s world of small-N clinical trials, genomic medicine, and a highly networked public, you can be sure that crowd-sourced knowledge will come from unexpected quarters, and will become critical to the discovery process.

Back to our “revolution”: Peerage of Science is assembling qualified peer reviewers and offering credits for their work, which can then be used to publish the reviewers’ own research. Articles are reviewed in a single round and participating journal editors can then track, accept, and publish the refereed content. I’m pleased that a ‘reputation system’ (explained helpfully by Peter Frishauf, founder of Medscape) for the work of peer reviewing is being tested.  But as stated on their website, PoS is (bold emphasis their own):

• not an open peer review service
• not a preprint server like arXiv.org or Nature Precedings – it is closed to the outside world
• not providing an alternative publishing model.

It’s a start, but is it disruptive?  Michael Nielsen, author of the recent powerhouse book, Reinventing Discovery: The New Era of Networked Science, gives a historical perspective in his essay The Future of Science:

The adoption and growth of the scientific journal system has created a body of shared knowledge for our civilization, a collective long-term memory which is the basis for much of human progress. This system has changed surprisingly little in the last 300 years. The internet offers us the first major opportunity to improve this collective long-term memory, and to create a collective short-term working memory, a conversational commons for the rapid collaborative development of ideas. The process of scientific discovery – how we do science – will change more over the next 20 years than in the past 300 years.

And his vision of the future:

 We should aim to create an open scientific culture where as much information as possible is moved out of people’s heads and labs, onto the network, and into tools which can help us structure and filter the information. This means everything – data, scientific opinions, questions, ideas, folk knowledge, workflows, and everything else – the works. Information not on the network can’t do any good.

Ideally, we’ll achieve a kind of extreme openness. This means: making many more types of content available than just scientific papers; allowing creative reuse and modification of existing work through more open licensing and community norms; making all information not just human readable but also machine readable; providing open APIs to enable the building of additional services on top of the scientific literature, and possibly even multiple layers of increasingly powerful services. Such extreme openness is the ultimate expression of the idea that others may build upon and extend the work of individual scientists in ways they themselves would never have conceived.

Recognizing that review and commenting is central to the discovery process, Nielsen bemoans the lack of incentives for sharing knowledge in the culture of science, and indeed the many disincentives:

The contrast between the science comment sites and the success of the amazon.com reviews is stark. To pick just one example, you’ll find ~1500 reviews of Pokemon products at amazon.com…Some people find this contrast curious or amusing; I believe it signifies something seriously amiss with science, something we need to understand and change.

Nielsen goes much further and I highly recommend his book. It’s encouraging that there’s now a vocal wave of enthusiasm from a growing enclave of publishers and scientists, to shed the vestigial processes of reporting research and embrace open collaboration as central to discovery (indeed, check out this brilliant Glowing Map of Science Collaboration created by Olivier Beauchesne at Science-Metrixm, described in David Dobbs’ blog at Wired.com).

Nature, Science, Cell, PLoS, Springer and others are testing the water, but a true revolution will take many more daring experiments; as Richard Smith has noted,

…experimentation inevitably means some failures. ‘In all science, error precedes the truth, and it is better it should go first than last,’ said Hugh Walpole…. It does, however, feel very bold for editors to abandon prepublication of peer review — like walking into the street naked. But if the emperor has no clothes, what’s to be lost? Nothing, but much is to be gained.

Meanwhile, this week we at Faculty of 1000 announce additional rebel fire in the guise of F1000 Research (@F1000Research).  In this open access repository for original research analysis and data, we’ll tackle all the “not’s” described above by Peerage of Science, with immediate publication followed by open review. Read more about it in the inaugural blog post penned by editor Rebecca Lawrence.

NOTE: Andrzej Krauze illustrated the Quixote drawing for the F1000 2012 calendar. His brilliant satirical art appears regularly in The Guardian, New Scientist, The Scientist and many other publications worldwide.

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?

Quick post from the media table at today’s Medicare Innovation Summit:

Deservedly famed surgeon & author Atul Gawande just put together a bunch of thoughts into a potent summary. Paraphrasing from memory:

There is a bell curve for quality – a wide gap between the best care and the worst.

There is another bell curve for costs – again, a wide gap.

Surprisingly, the two curves do not match.

And that means there is hope.

Because if the two curves did match – if the best care were the most expensive – then we would be talking about rationing.

Instead, we’re talking about what works.  [This one was his point, but not his actual words.]

This is immensely important, because so often we hear people say things that the data don’t support:

• “Costs are high because America’s care is so good.” But the curves don’t align.
• “We can’t afford to give everyone the best – we’re already spending too much.” There’s plenty of money already, if we can get all providers to do the effective things.

A major issue is the providers who aren’t even trying to do what works – and the consumers, employers and insurance plans who don’t react to this data by taking their business elsewhere, putting costly and ineffective providers out of business.

If patients and clinicians are going to be fully empowered, collaborating to create better outcomes, we need to share this awareness with each other. Be empowered and speak up – don’t act powerless, like “there’s nothing we can do – the system is a problem.”

You can watch the summit live here and follow the twitter feed at #cisummit. The event’s web page is HCIDC.org; agenda is here.

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!

“For decades baby boomers have been associated with movements
advocating equality, cooperatives and shared experiences. But far from
being some relic of the 1960’s, activist attitudes continue to be part
of our social fabric.”

Well, erm, Ellen – yeah, the society was founded by the “aging
boomers” you cite, but half our board is post-boomer. :-) (We don’t
have statistics on the membership at large, but the board we do know!)

And just for the record, this is the sign of a revolution that’s
succeeding: it’s being adopted by the next generation. Woot.

Another summary of the Project’s health research is the following tip sheet, compiled by yours truly. I plan to keep it updated, so bookmark Pew Internet: Health on pewinternet.org.

Internet access:

78% of U.S. adults use the internet (May 2011 survey). For more, see: Who’s Online.

83% of U.S. adults own a cell phone (May 2011 survey). For more, see: Gadget Ownership and Pew Internet: Mobile.

Online health information search:

80% of internet users, or 59% of U.S. adults, look online for health information.

• This is based on a September 2010 survey, but it is a remarkably stable trend dating back to 2002. For more, see: Health Topics and Who Doesn’t Gather Health Information Online?

17% of cell phone owners, or 15% of adults, have used their phone to look up health or medical information.

• This finding is of particular interest to those interested in trends related to young people, Latinos, and African Americans, since these groups are significantly more likely than other groups to have mobile internet access. For more, see: Technology Trends Among People of Color and Mobile Health 2010.

The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals. For more, see: summary charts of health topics.

Also, keep in mind that the typical search for health information is on behalf of someone else – information access by proxy.

Peer-to-peer healthcare:

Pew Internet is tracking overall trends in how the internet is changing people’s relationships with health information and with each other.

“I don’t know, but I can try to find out” is the default setting for people with health questions.

• 34% of internet users, or 25% of U.S. adults, have read someone else’s commentary or experience about health or medical issues on an online news group, website, or blog.
• 24% of internet users, or 18% of adults, have consulted online reviews of particular drugs or medical treatments.
• 18% of internet users, or 13% of adults, have gone online to find others who might have health concerns similar to theirs. People living with chronic and rare conditions are significantly more likely to do this. See: Peer-to-peer Healthcare.

“I know, and I want to share my knowledge” is the leading edge of health care.

• 27% of internet users, or 20% of adults, have tracked their weight, diet, exercise routine or some other health indicators or symptoms online.
• 6% of internet users, or 4% of adults, have posted comments, questions or information about health or medical issues on a website of any kind, such as a health site or news site that allows comments and discussion.
• 4% of internet users, or 3% of adults, have posted their experiences with a particular drug or medical treatment.

For more, see The Social Life of Health Information, 2011 and Medicine 2.0: Peer-to-peer Healthcare.

As always, I would love to hear from people about what’s missing or what they wish we’d study. I welcome comments (below), tweets (@SusannahFox), and emails (sfox at pewinternet dot org).

So it’s big news that we’ve had TWO mass-media developments this week with almost identical titles:

1. Fabulous article in the January Angie’s List magazine, Empowered patients receive the best health care
2. Last night SPM member Nancy Finn (Twitter @NFinn8421) was on “Nightside” with Dan Rea, on WBZ Radio. She was discussing her book e-Patients Live Longer.  Nancy was thrilled (as was I, listening) that the callers – which that show does NOT screen – all turned out to be e-patients! One was even a regular caller who the host knows well … Dan had no idea the guy had a big e-patient story!

Evidently there are more of us than even WE realized – and with this mass media coverage, we can anticipate more.

I was struck last week by a remark in a discussion of patient-centric care: “…patient empowerment is probably beyond the reach of individual doctors/nurses to easily provide…” Two questions come to mind: who “owns” the power, and what does it look like?

First, the speaker implies that power is something bestowed upon patients by clinicians. The reverse is true. I don’t empower patients to participate in my practice as much as they empower me to participate in their care. Once the patient and I start working together, the only question is how the power sharing works, and the only truly non-participatory patient is the one who doesn’t come.

Second, empowerment in any relationship is neither coherent nor easily definable. Much of the discussion of patient-centric care I see falls into this trap, addressing empowerment as a binary: patients are or aren’t empowered, implying that empowered and powerless patients can be defined and treated as distinct groups.

Even as simple a thing as a screwdriver comes in a staggering variety of shapes, tips (slot, phillips, cross, hexagonal, pozidrive, torx), sizes and uses. In any given setting, the wrong screwdriver can be as problematic as no screwdriver, and one can often get an excellent result with something less than the perfect screwdriver. Power in a relationship should also be seen as an infinitely variable phenomenon.

(Note: To the extent that power in healthcare is derived from knowledge or skill, it should be kept in mind that the clinician’s expertise is largely limited to one of the three components: biology. The other two, the patient’s psychology and context, come from the patient. I am indebted to my time in training with George Engel, responsible for the biopsychosocial model: more here and here and here.)

I don’t see power as something that clinicians can give to their patients, or empowerment as something that clinicians create. My vision is a world where clinicians are comfortable collaborating with their patients and erect no barriers to empowerment, and where patients are comfortable using their inherent power, allowing a wide variety of flexibly collaborative relationships.

• I say this as a physician. I try to be open to relationships with my patients where power is shared. Part of this sharing is that I do not determine my patients’ roles. I cannot guarantee that my patients are aware of their power, let alone understand its value and limitations. I certainly cannot compel them to wield their power.
• I say this as a family member of patients, some of whom have survived their medical challenges, and some not. Even among my relatively small sample, there has been a confusing and often upsetting variety of approaches to personal empowerment, from individual to individual, from illness to illness, from provider to provider, and even from Monday to Tuesday. Like the weather, the only constant is change.
• I say this as a patient. I recognize that my need and ability to share power with my clinicians is inconsistent, varying quite widely with the problem, the provider, and my momentary mental state. To make things harder, my interest and my ability to share are not always aligned or rational (meaning cognitively driven) at any given time.

As a final note, I prefer to think in terms of collaboration rather than power or empowerment. For me, framing the discussion in terms of power/empowerment focuses on the relationship and predisposes to the error of a simple and too often inflexible model of empowered patients. Framing the discussion instead in terms of collaboration makes it easier to focus on the goals of care, rather than the relationship, allowing more easily for different relationships in different circumstances.

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.)

I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event.  It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it.

I’ll write more about it but for now I want to just get this started, because I think they’re going to be crowd-sourcing input from us out here, via Twitter and probably some blogs.

These are all heavily data-centered, open-source, collaborative projects. Below I’ll say why this looks so very different to me. But first, here are the Twitter hashtags, with links to the Twitter feeds:

• Top level hashtag #MLhw12 - 
• web page here
• feed & archive here
• participate live on Tweetchat here

• Project 1 – pain management including skin conductance and data-reporting pillbox (#MLpain)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 2 – asthma management with toy-like spirometer (#MLasthma)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 3 – cardiac rehab with a Microsoft Kinect and pulse oximeter (#MLcardiac)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 4 – Integrating MOTOACTV Fitness Tracker w Hypertension and Diabetes Management – with a hacked insulin pen (#MLdiab)
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 5 – humanizing mobile health apps by tying people’s life goals to their medical metrics (#MLlifegoals).
  I especially love this one – I tweeted from the project’s description: “the problem is [most apps] focus on goals that lack true meaning to the user … apps focus on heart rate, when pt wants 2b able to play w/her grandkids for 5 min”
• description here
• feed & archive here
• participate live on Tweetchat here

• Project 6 – management of post-op needs including a virtual pet that shows how well the child is doing (#MLpostop)
• description here
• feed & archive here
• participate live on Tweetchat here

What’s conspicuously different about this event compared to any other I’ve seen:

In this room, if what needs to get done isn’t getting done, it’s viewed as a system failure, not a “patient compliance” problem. These people are striving to make everything work better, in our hands.

After 150 events in two years (medical conferences, tech events, policy meetings), I’ve concluded that medicine’s single most important dysfunction is the idea that useful wisdom comes only from biology (or other medical innovations), and it’s up to us to use whatever they danged well give us, containing that received wisdom.

So when patients don’t do what they’re told, it’s a “compliance” problem – and people in healthcare bitch about how irresponsible we are. Even the October Health Leaders magazine had this near the start – in its “Patient Engagement” issue!

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations.

Meh! How about you guys get your act together and give us methods that work for us? 

I mean, seriously: in what other industry can they respond to “This is hard to use” and “I don’t like doing this” by saying “You’re just not good enough for our wonderful inventions”?

I used to work in software companies that tried that approach. They went out of business when innovators came along who understood that easy to use gets done better, and people like it more.

A great example is GlowCaps – a pill bottle cap that glows, beeps, or texts you when it’s time to take your pills. (Check out the “adherence” results from a clinical trial – nearly perfect! No change in patient “morality” – just a better freakin’ tool for us to use.)  (David Rose, formerly of that company (now sold), is in this event.)

Here’s to the people working on these challenges. If you’re a Twitter fiend, follow those hashtags and let the innovators know what you like.

p.s. Anyone who wants to complain about patient “compliance,” please remember that the shoe’s on the other foot with clinician “quality”: hospital workers only wash hands per protocol about half the time, physicians prescribe the standard of care only half the time. The result, as Susannah Fox blogged about Peter Margolis, is that “.5 x .5 = .25″ – the shared unworkability of everything means clinicians do what they’re told half the time, and patients do too, so healthcare on balance operates at 25% efficiency.

And we grouse about rising costs and fail fail fail.

Here’s to the geeks who understand what works.

Last May we reported on a study in process at Emory University about whether a “safety-net” (poor) population would engage with a personal health record. The preliminary results in that poster showed that what predicted patient performance was not how poor they were, nor how bad their mental health condition was, nor how bad their chronic condition was – what predicted performance was how activated the patient is – how engaged they are, as measured by the PAM Patient Activation Measure.

Today, a new piece by Pauline Chen in the New York Times “Well” blog reports a similar outcome at Fairview Health Services in the Twin Cities.

At first blush this looks to be huge news for the participatory medicine movement. Check it out.

(For more information on the PAM, see also our October post, with an in-depth presentation about the PAM from its creator, Dr. Judith Hibbard of the University of Oregon. In a comment at bottom she added a long list of publications that link activation to outcomes.)

Update: ”Support the Open Access Movement: Stop the Research Works Act!”, a new online petition,  has been setup to allow anyone to voice their opposition to the terrible proposed piece of legislation known as H.R. 3699/RWA. Please, spend a few shirt minutes there and let the world know of your opinion!

In 2008, in culmination of years of effort and community interaction, the National Institutes of Health made all federally-funded research publications openly accessible by publishing the NIH Public Access Policy. The purpose of mandating such open access, at a maximum 12 months after publication, was to ensure that the findings are accessible to all their potential users, not just (as in the print era) to those whose institutions can afford subscription access to the journal in which they happened to be published. Opening access maximizes dissemination, a key element to maximize scientific discovery (see the great 2008 presentation by Elias A. Zerhouni, M.D., NIH Director, to the Subcommittee on Courts, the Internet, and Intellectual Property). Of course, ACOR members were highly supportive of the proposed policy and provided a significant number of comments during the initial RFI period.

In 2009 the policy was made permanent by the Omnibus Appropriations Act:

SEC. 217. The Director of the National Institutes of Health (“NIH”) shall require in the current fiscal year and thereafter that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.

Compliance with this Policy remains a statutory requirement and a term and condition of the grant award and cooperative agreement, in accordance with the NIH Grants Policy Statement.

Right now, the great gift to the public that is the NIH Public Access Policy, is under serious attack with a proposed piece of legislation. H.R. 3699, aka The Research Works Act (RWA) would prohibit the deposit of the manuscripts mentioned above, seriously impeding the ability of patients and caregivers, researchers, physicians and healthcare professionals to access and use this critical health-related information in a timely manner. Oppose H.R. 3699!

As any person looking for information of significance about cancer knows, having access only to the abstract, and not to the full text article, is insufficient.  Ironically & symptomatically, the 2004  article by Zerhouni, then-director of the NIH, entitled “NIH Public Access Policy” explaining the rationale behind the proposed policy, is behind a paywall and demonstrates the extent of the problem!

In fact I have been working for a while with Peter Murray-Rust from Cambridge, leading thinker behind the Panton Principles & guru of large scale text mining of scientific publications, to push further the extraction of disease-focused information from Open Access articles, because, as Peter says “Open Knowledge Saves Lives! Close Access Can Kill!”

What is H.R. 3699 / RWA?

Presented “To ensure the continued publication and integrity of peer-reviewed research works by the private sector” the bill states:

Before reading further, remember the definition of Participatory Medicine:

a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

How can you be a responsible driver of your health if you don’t have direct access to all information? That’s why Dave has been fighting for his damn data and similarly why ACOR has been engaged in multiple efforts to maximize the dissemination of any and all scientific publications that relates to an ACOR group condition.

Seeing a corrupt travesty of the democratic process used today to promote the interests of a few gatekeepers at the expense of millions of people is very disturbing. The NIH and other agencies must be allowed to ensure timely, public access to the results of research funded with taxpayer dollars. Please oppose H.R. 3699. You’ll be in great company!

For example, Tim O’Reilly, who has been a main witness of the power of Openness in computing  finds H.R. 3699 objectionable:

I oppose H.R. 3699 (“To ensure the continued publication and integrity of peer-reviewed research works by the private sector.”) because it is a classic example of “regulatory capture” by an industry that is feeding off of government largesse.

It is a frontal attack on the open access movement, which scientists are increasingly seeing as critical to the further progress of science.

[…]I strongly suggest that the authors of this bill consult the Panton Principles, put forward by a group of scientists at Oxford University, or read Michael Nielsen’s new book, Reinventing Discovery, about the importance of open access to the future of science.

Please don’t write laws that protect 19th century industries against 21st-century disruption!

Tim’s last sentence may need some explanation, which thankfully has been provided by Microsoft researcher and grand guru of social media’s influence on the youth, danah boyd, in her December blog post Save Scholarly Ideas, Not the Publishing Industry (a rant):

The scholarly publishing industry used to offer a service. It used to be about making sure that knowledge was shared as broadly as possible to those who would find it valuable using the available means of distribution: packaged paper objects shipped through mail to libraries and individuals. It made a profit off of serving an audience. These days, the scholarly publishing industry operates as a gatekeeper, driven more by profits than by the desire to share information as widely as possible. It stopped innovating and started resting on its laurels. And the worst part about it? Scholars have bent over and let that industry continuously violate them and the university libraries that support them. [..]

WTF? How did academia become so risk-adverse? The whole point of tenure was to protect radical thinking. But where is the radicalism in academia?

Ironically, of course, it’s the government who is trying to push back against the scholarly publishing’s stranglehold on scholarly knowledge. [..]

Please, I beg you, regardless of whether or not we can save a dying industry, let’s collectively figure out how to save the value that prompted its creation: making scholarly knowledge widely accessible.

In all fairness I must present the opinion of those who think H.R. 3699 is a step forward. You may not be entirely surprised that the most supportive is none other than the Association of American Publishers and its Professional and Scholarly Division. This is what they had to say: 

The legislation is aimed at preventing regulatory interference with private-sector research publishers in the production, peer review and publication of scientific, medical, technical, humanities, legal and scholarly journal articles. This sector represents over 1.3 million articles published annually which report on, analyze and interpret original research; more than 30,000 U.S. workers; and millions of dollars invested by publishers in staff, editorial, technological, capital and operational funding of independent peer review by specialized experts. North American-based science journal publishers alone account for 45% of all peer-reviewed papers published annually for researchers worldwide. [..]

The Research Works Act will prohibit federal agencies from unauthorized free public dissemination of journal articles that report on research which, to some degree, has been federally-funded but is produced and published by private sector publishers receiving no such funding. It would also prevent non-government authors from being required to agree to such free distribution of these works. Additionally, it would preempt federal agencies’ planned funding, development and back-office administration of their own electronic repositories for such works, which would duplicate existing copyright-protected systems and unfairly compete with established university, society and commercial publishers. [..]

Journal articles are widely available in major academic centers, public libraries, universities, interlibrary loan programs and online databases. Many academic, professional and business organizations provide staffs and members with access to such content.

So, here we have it! I’ll let others describe what stands behind the term “private-sector research publisher” here and here (good reads!). What strikes me is that in the entire press release there is not a single mention of the American people at large. The publishers want to stop the public from having easy access to scientific articles. The last paragraph really glows when paralleled with Tim’s last sentence “Please don’t write laws that protect 19th century industries against 21st-century disruption!”

To add insult to injury look at the two co-sponsors of the bill.

Darell Issa is the wealthiest member of congress, with an estimated fortune of between $165 million and $451 million in 2010. I doubt that paying $32 to $40 for a scientific article makes a dent in his monthly spending, unlike the situation for most Americans. What is completely incomprehensible is that Darell Issa is avowedly supporting Openness. His Twitter page says it all: “I also greatly enjoy an #OPEN, accessible & uncensored internet.” The Atlantic wondered “Why Is Open-Internet Champion Darrell Issa Supporting an Attack on Open Science?” a post ending with “And that’s just it. If the goal is protecting the publishing industry, this bill’s a winner. But for those interested in improving access to scientific research, they should stay far, far away.” Do you start to see a trend in the objections to this nasty piece of legislation?

The 2^nd co-sponsor, Democrat Carolyn Maloney, is the largest recipient of contributions from the publishing industry. Michael Eisen discovered via MapLight, a site tracking political contributions, that Dutch publisher Reed Elsevier and its senior executives made 31 contributions to members of the House in 2011, of which 12 went to Representative Maloney. This includes contributions from 11 senior executives or partners, only one of whom is a resident of her district.

Why should e-patients oppose H.R. 3699?

Michael Eisen said it best:

It is inexcusable that a simple idea – that no American should be denied access to biomedical research their tax dollars paid to produce – could be scuttled by a greedy publisher who bought access to a member of Congress.

So I urge you to call/write/email/tweet Representative Maloney today, and tell her you support taxpayer access to biomedical research results. Ask her why she wants cancer patients to pay Elsevier $25 to access articles they’ve already paid for. And demand that she withdraw H.R. 3699. [emphasis added]

Representative Maloney:

Twitter: @RepMaloney @CarolynBMaloney

Phone: 202-225-7944

FAX: 202-225-4709

Email: Use this form