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?

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’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.

ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list as  an “exceptional email community,” and quoted volunteer list manager Robin Martinez:

“The award recognizes the KIDNEY-ONC LISTSERV list for connecting people to provide life-changing and indeed life-saving information and support. The credit goes to our wonderful KIDNEY-ONC members whose deep dedication to finding and sharing information is matched only by their support and caring for fellow patients and caregivers. I am proud to be part of all this.”

She’s right; I well remember when this community gave me high quality, accurate, up-to-date information, within hours of my first message to them – five years ago this January. (And yes, I checked with my oncologist, David McDermott, at Beth Israel Deaconess – he confirms that KIDNEY-ONC’s information was indeed accurate, and I’ve since learned it’s better than many community oncologists have.)

I also well recall that when I was about to enter treatment, I asked my ACOR buddies what to expect. (The exotic treatment I got has side effects that the American Cancer Society describes as “often severe and rarely fatal.”) When it hit, I was ready – and today Dr. McDermott says “I don’t know if you could have tolerated enough to do the job if you hadn’t been so prepared.”

How’s THAT for value in healthcare?

In a private note, Robin also encapsulated the life of a patient community manager: ”Frankly, I’ve been so busy with kidney cancer activities that the thought of an award was the farthest thing from my mind. I was stunned, thrilled, and gratified to learn that Kidney-Onc is this year’s grand prize winner.”

In my speeches I often say “ACOR is very low-tech – a bunch of plain old plain-text Listservs – you can’t attach anything, you can’t even do boldface. ACOR proves that when it comes to social networking, it ain’t the platform, it’s the people.”

(“Listserve” is often used as a generic term, but Listserv® started it all – it’s the original, and trademarked, name of mailing list software introduced way back in … 1986!)

To join the ACOR email group, visit this page. For a disorganized list of other patient communities on ACOR and elsewhere, see this page on my own site, which links to many others.

My personal favorites among several quotable lines in this article:

“Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our ‘product.’ In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.”

and

“Health care providers must embrace the goals of improved safety, efficiency, effectiveness, and timeliness, but must also realize that health care does not own health and care. If it is owned by anyone, it is owned by patients.”

Happy New Year, dear readers! May 2012 bring us closer to attaining patient-centered care.

First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post:

• “Look at your medical record. … As health information exchanges, and collaborative networks enable the sharing of information – – – that can work both to your benefit, as well as  amplify the risk of harm.   Bad information in… bad information out.”
• “when your physician or healthcare provider is discussing their thoughts on your diagnosis, and a possible treatment plan, it is extremely important that you feel comfortable in questioning either the diagnosis or the treatment plan and asking whether other options or possible diagnoses are possible“
• “Although many patients do in fact seek second or third opinions from a specialist, they rarely seek second opinions, if ever, on diagnostic studies. …
• The very same holds true for pathology specimens. There are pathologists who are highly sub specialized in certain areas and thus are far better qualified to determine  whether or not a tumor they’re looking at is malignant, benign, and what subtype of tumor it might be – – – which could make the world of difference when determining what treatments are available.”

There’s more – hm, should we have a quiz on Friday??

The other was from Amy Romano (@MidwifeAmy) of Childbirth Connection, who’s appeared many times here: How to Get Good Maternity Care, on the Lamaze International Science & Sensibility blog. It’s got multiple resources – here’s one, a slide show of their ten pointers:

Also available on the post is a PDF of the tips and a short video, Childbirth with a Heart, that makes a great case in just 2:32 for being actively engaged in all aspects of birth – not just the naming.

Thanks to both of these professionals – a physician and a midwife – for sharing these empowering and enabling posts. Each supports patients being active, responsible partners in participatory medicine.

I like it – especially the new name of their blog, Health News Watchdog. And for the first time, they’re accepting comments and enabling dialog with the reviewers. Well done!

Why it matters:

As HNR documents, mainstream health reporting is too often full of crap. Most doctors don’t even realize this, so we patients out here are told to stay off the internet and stick to mainstream news sources. What’s an e-patient to do??

Get educated, get engaged, learn specifics. Anyone can say “that story’s crap,” but this site gives a framework for our thoughts. When reading about a new treatment, ask:

1. How often do the claimed benefits occur? It’s not uncommon for a 1% or 2% response to get massive publicity. See their informative post last January about statins.
2. How often do harms occur? You can’t evaluate claimed benefits without knowing the risks, but too often health reporters don’t ask.
3. How strong is the evidence? Way too often, a reporter blindly accepts what a press release says.
4. Is the condition it treats exaggerated? The landmark books Selling Sickness and Overtreated established that diseases are often overblown for commercial purposes. No health reporter can overlook this issue and be considered competent.
5. Are there alternative options? Often a press release will, not surprisingly, tout the product’s advantages as if it were in a vacuum. It’s a health reporter’s job to report it in context. Many stories don’t.
6. Is this really a new approach? Surprisingly often, an existing product is re-packaged , or re-promoted as new, and an untrained reporter doesn’t notice.
7. Is it available to me?
8. What’s the total cost of the treatment being covered?
9. Who’s promoting it? If the story doesn’t mention where the information came from, readers can’t evaluate its objectivity.
10. Do they have a conflict of interest?

Based on these criteria, stories are rated from zero to five stars. Of the 1,653 articles reviewed so far, 39% have earned more than three stars, and 11% earned only one or zero. (Yes, 1 in 9 mainstream media health stories were almost useless!)

Rating not just stories, but organizations’ long-term records:

A new section on news organizations’ overall ratings (across many articles) is informative. Among the best ratings:

• LA Times (130 stories) got 4 or 5 stars 55% of the time, and 0-2 stars only 20%
• Associated Press (238 stories): 57%; 0-2, 18%.
• NY Times (114 stories): 4-5 52%, and 0-2 stars 21%
• NPR (39 stories): 4-5 stars 57%, and 0-2 21%
• USA Today (50): 4-5 52%; 0-2, 24%
• Washington Post (41): 4-5 51%. That’s good, but a surprising 36% earned 0-2 stars.

Among the lesser stellar:

• Newsweek (10 stories): two had 5 stars, four had 3, four had just 2
• Time (21): 4-5 stars 39%; 0-2 stars 34%.
• CNN (33): 4-5 stars 36%, 0-2 34%.
• US News (33): 4-5 19%; 0-2, 26%.

Most amazing to me is that WebMD, which is often recommended as reliable, earned 4-5 stars just 39% of the time, and was more likely (43%) to earn just 0-2 stars.

See why a health information seeker needs to know this? Someday perhaps your doctor’s office will have an “information coach,” but even then, Health News Review will still be more accessible. Besides, even the best of these outlets had 0-2 stars 18% of the time. You really do need to evaluate each story separately.

Long-term impact?

To me one great promise of the site has been that perhaps it will improve the quality of the reporting. So, being an analytics / trend-watching guy, I’d love to see if ratings have improved year to year! Subjectively, it sure seems like we’re seeing more high-quality articles than we used to.

Kudos to publisher Gary Schwitzer, and many thanks to the site’s 28 reviewers – including Carol Torgan, Ph.D., who’s a member of our Society. You rock (and enable) the e-patient world.

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!

Hacía tiempo que teníamos en mente la posibilidad de llevar a cabo la traducción del Libro Blanco de los e-Pacientes al Español, ya que con más de 420 millones de hispanoparlantes en todo el planeta, nuestro idioma es ya la segunda lengua más hablada en el mundo, y la tercera más usada en Internet. De hecho hay casi la misma cantidad de hispanoparlantes en EEUU que en España.

Así fue como a raíz de la presentación de Dave deBronkart en las jornadas celebradas en Bilbao (España) Pacientes y profesionales en la Web 2.0, durante el pasado mes de julio de 2011, esta idea tomó fuerza. De este modo, un grupo de 7 españoles con diferentes profesiones y de distintas partes del país, pero con el interés común de querer fomentar y dar a conocer al mayor número de personas la revolución de los e-pacientes, nos organizamos a través de Twitter y, después de unos meses de trabajo en equipo, la versión Española del Libro Blanco de los e-Pacientes es ahora una realidad.

El movimiento de los e-Pacientes surgido en EEUU se ha convertido en un fenómeno en claro crecimiento gracias a la Web 2.0. Uno de los intereses más universales en Internet es la Salud, y por tanto, cualquier persona con acceso a Internet es potencialmente un e-Paciente independientemente de su nacionalidad. Buscar información sanitaria en Internet no nos hace e-Pacientes. Es un síntoma de un cambio más radical, hacia los ciudadanos más capacitados-empoderados y comprometidos con su salud. Si tomamos decisiones informadas al comprar una casa, ¿por qué no sobre nuestra salud? Los e-Pacientes están llamados a tomar decisiones sobre su salud en una estrecha colaboración con los profesionales sanitarios. Internet es sólo una herramienta más, una puerta de enlace para encontrar información y socializar. Los verdaderos e-Pacientes no se creen todo lo que ven en Internet, sino que adquieren un conjunto de habilidades para encontrar información de calidad, aprenden a separar el grano de la paja.

Y dentro de este contexto, la comunidad hispana en torno a la salud 2.0 está en plena ebullición. Es imposible mencionar todas las personas involucradas en la temática, desde las trincheras de la atención primaria a investigadores en centros de I+D. La Web 2.0 ya se está utilizando en beneficio de pacientes y los profesionales hispano hablantes. Por ejemplo, hay casos de blogs de pacientes en español con más de 600.000 seguidores (por ejemplo, Diario de Pedro), hay comunidades de pacientes con miles de miembros (p.e. EsTuDiabetes) y también hay comunidades donde pacientes y profesionales trabajan conjuntamente forumclinic. Los hospitales españoles también están comenzando a ponerse al día en el uso del social media (observatics). Todos ellos trabajando-soñando con mejorar nuestra salud y sistemas sanitarios usando la Web 2.0. Junto a las innumerables iniciativas, también hay un intenso debate sobre el impacto de la Web 2.0 en la atención sanitaria, tales como los debates twitter semanales #hcsmeuES desde España y #hcsmla desde América Latina. Conferencias y desconferencias se organizan cada vez con una mayor frecuencia. La comunidad ha creado también el directorio de recursos Españoles sobre la Salud 2.0 wikisanidad. También hemos de destacar el libro sobre e-Pacientes y Redes Sociales que en pocos días consiguió miles de descargas (disponible en: www.salud20.es). Otro evento de especial interés fue la realización de Manifiesto de Abla (www.salud20.es/manifiesto) que propone una serie de principios para conseguir una sanidad más participativa con el uso de Internet, un manifiesto que fue redactado por más de 70 autores de forma colaborativa usando herramientas como Google Docs y Twitter.

Pero todo esto no acaba aquí, hay muchos proyectos e ideas brotando de la comunidad hispana sobre la Salud 2.0. Pertenecemos a una comunidad global de personas que creen que la Web 2.0 puede mejorar nuestros sistemas sanitarios. Debemos unir esfuerzos con nuestros compañeros de viaje en los EEUU y del resto del mundo, pues hablando se entiende la gente y de esa manera aprenderemos los unos de los otros.

Elia Gabarron (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editores de la versión española Libro Blanco de los e-Pacientes

To read this post in Spanish, click here.

From the editors of the Spanish edition, Elia Gabarrón and Luis Fernández Luque:

For some time we’ve had in mind the possibility of carrying out the translation of the e-Patient White Paper into Spanish, because with more than 420 million of Spanish speakers worldwide, our language is now the second most spoken language in the world, and the third most widely used in Internet. In fact, there are almost as many Spanish speakers in the US as in Spain.

After Dave deBronkart’s presentation at a conference held in Bilbao (Spain) last July, Patients and professionals in Web 2.0, this idea gained momentum. A group of seven Spanish people with different professions and from different areas of the country, but with the common interest of encouraging and showing as many people as possible the e-patient revolution, organized ourselves through Twitter. After a few months’ teamwork, the Spanish version of the e-Patient White Paper is now a reality.

The e-patient movement that emerged in the U.S. has clearly become a phenomenon thanks to the growth of Web 2.0. One of the most universal interests on the Internet is health, and therefore, anyone with Internet access is potentially an e-patient regardless of their nationality. To find health information on the Internet does not make us e-patients. It is a symptom of a more radical shift towards more skilled citizens, empowered and committed with their health. If we seek information to decide when we’re buying a home, why not with our health? e-Patients are called to make decisions about their health in close collaboration with health professionals. The internet is just another tool, a gateway to find information and socialize. Real e-Patients don’t believe everything they find online, they develop a set of skills to find quality information; they learn how to separate the sheep from the goats.

Within this context, the Hispanic community about health 2.0 is in full swing. It is impossible to list everyone involved in the issue, from the trenches of primary care to R&D researchers. Web 2.0 is already being used for the benefit of both patients and Spanish-speaking professionals. For example, there are Spanish patient blogs with over 600,000 followers (eg, Diario de Pedro), there are communities with thousands of members (eg EsTuDiabetes), and there are also communities where patients and professionals work together like forumclinic. Spanish hospitals are also beginning to get up to date with the use of social media (observatics). All of them, working-dreaming about improving our health and health systems using Web 2.0.

Along with the many initiatives, there is also an intense debate about the impact of Web 2.0 in healthcare, debates such as the weekly twitter chat #hcsmeuES from Spain and #hcsmla from Latin America. Conferences and un-conferences are organized with increasing frequency. The community has also created a directory of resources for Spanish Health 2.0, wikisanidad. In addition, we must highlight the book about e-Patients and Social Networks that has been downloaded thousands of times in a few days (available at www.salud20.es). Another very good example of collaboration towards participatory medicine and Web 2.0 is the Manifest of Abla, www.salud20.es/manifiesto, written collaboratively by more than 70 authors using tools such as Google Docs and Twitter.

But it doesn’t end here. There are many projects and ideas flowing from the Hispanic community about Health 2.0. We belong to a global community of people who believe that Web 2.0 can improve our health systems. We must join hands with our fellow travelers from the U.S. and from around the world, because the way to work things out is by talking.

Elia Gabarrón (@EliaGabarron) & Luis Fernández Luque (@luisluque)
Editors of the e-Patient White Paper Spanish version

• This post’s title originally said HHS was seeking patients. Actually it’s PCORI, a new non-government agency, as described below. Both affect the future of healthcare, but PCORI isn’t part of HHS.
• The title also said “None are stepping up,” which disrespected those who had. “Too few” is better. As this post shows, there will be a lot of work to do, so a lot of us should get involved.

SPM member Sherry Reynolds brought this to my attention. It’s a call for citizen participation in reviewing grants next year.

The deadline is NOON Wednesday Oct 26 (EDT). And the application process is intentionally SO-not-Washington: it’s a one page form

This is about a key part of America’s healthcare overhaul – shifting our research to be more focused on what patients want, and shifting our healthcare practice to be driven more by what patients want. There’s a new research institute for Patient Centered Outcomes – PCORI, and:

• Next year they’re accepting grant applications. These applications get reviewed; some are chosen, some are not.
• This time, they’ve asked for “non-traditional” (i.e. ordinary citizen) people to participate in reviewing the grants.
• That’s really important: the government is taking this grant process out of the “echo chamber” of the DC beltway. They’re inviting us to say what we want.
• It’s especially important, because these grants are for work about patient centered outcomes.
• BUT HARDLY ANY CITIZENS HAVE APPLIED. They want more. (You! Us! Me!) (Yes, I’m applying too. Join me.)

It’s simple: a brief form, plus uploading a short statement (Word file) about which area interests you. (See list below.)

Finances:

• You have to attend a one day training in Washington [DC], next February. Expenses are covered, plus a token honorarium (fee) of $200.
• Addition: see comments for discussion of whether remote participation might be possible, for applicants who can’t get to DC.
• If you’re chosen, the work itself (reading & commenting on grants) will be unpaid. Your “reward” is that you get to influence national policy! Directly! At last, Washington will be listening to you. :-)

So here’s what you do:

• Read the quick list (below) of the eight areas of interest.
• Get two documents, to upload:
• Your current CV / resume. Don’t kill yourself over this.
• Create a short statement (in Word or text, 1 page or less) of which area(s) interest you.
• Fill in the form

Do not be stopped by thinking “I don’t have fancy credentials”! This is for ordinary citizens. They’re just asking that stuff – you don’t need straight A’s.

e-Patient Dave
SPM Chair and rabble-rouser

The areas where PCORI will be accepting grant proposals: (These are my simplified paraphrases – the full text is here.)
For which might you have opinions??

1. Establishing priorities for patient-centered outcomes research. (“That one would be stupid – this one’s more useful for real patients.”)
2. Methods for bringing together patients, caregivers, clinicians, and other stakeholders in research, including training in participatory research
3. Patient-centered approaches for translating evidence into health care practices that account for individual patient preferences for various outcomes.
1. This may include how to publicize research findings in patient-friendly ways.
4. Identify gaps in awareness of treatment options (for both patients and providers) — especially for vulnerable populations (low-income, minorities, etc)
5. Outcomes instruments – tools to:
1. measure or predict outcomes of interest to patients,
2. standardizing measurement of patient-reported outcomes across a variety of interventions and populations.
6. Methods to assess the patient perspective when researching behaviors, lifestyles, and choices within the patient’s control that may influence their outcomes. (“Are we thinking about this from the patient’s point of view?”)
7. The care team’s interaction when multiple options exist, especially strategies that respect patient autonomy and promote informed decision-making.
1. As we’ve written here many times, shared decision making moves us away from informed consent (where the docs decide and you sign), to informed choice, where you’re shown the range of options, with trade-offs, and you choose. This area is about how the care team interacts with patient and family.
8. Advancing analytical methods. (For geeks only. You know who you are.)

The video is a parody of the 1983 pop smash music “867-5309 / Jenny,” about a geeky guy who was awestruck by a big-haired blonde in a bar, who gave him her number and left. He never got up the nerve to call her, but did get up the nerve to peep into her bedroom window, and went to prison.

Now it’s 30 years later, he’s out, and the parody starts with these words:

“Jenny Jenny, since I first saw you,
It’s been three decades, wow the time sure flew.
…
And though I know there’s no chance that you’d be my wife,
I wanna tell you some numbers that could save your life.”

The catchy phone number “867-5309″ becomes “Blood pressure, lipids and BMI.” :-) Enjoy:

____

For a wry side note about the phone number itself, see Wikipedia’s note popularity and litigation on companies who adopted the number as their own, trademarked it, and sued each other over it. Oy. :-)

On October 20-21 in Boston, the Connected Health Symposium will present the latest opportunity to attend a fantastic health care innovation conference. If you’re interested, click to view the PDF invitation from Joe Ternullo, the organizing chair of the event. Essentially, patients and caregivers who would like a free pass should send Joe an email: jternullo (at) partners.org.

If you’d like to read my reactions to last year’s symposium before you make your plans, here are a couple posts:

The Future of Health: Robots, Enchanted Objects, and Networks

Connected Health: patient networks panel

If you’d like to learn more about how Medicine 2.0 included e-patients, please see:

An Open Letter to Stanford

Announcing Medicine 2.0 Stanford ePatient Scholarship Program

There are many more conferences and opportunities for learning. Here are some lists I found:

Global Event List for Health Innovation

Alex Albin’s list of upcoming conferences

HealthCamp Calendar

What other events are on the horizon? What are your observations about including patients and caregivers in health innovation events?

This is a guest post by SPM member John Sharp, Manager of Research Informatics at the Cleveland Clinic. John gets it about how information empowers healthcare and e-patients. I first met him at Medicine 2.0 in Toronto, 2009, after which he wrote an article for our Journal of Participatory Medicine, which began: “If you have not read the e-Patient White Paper, you don’t understand the future of medicine.”

Strong words, and of course we agree. Here’s his take on an announcement this week that he believes is an important step toward the potential of health IT – the world in which he works; I added a few comments.

“Query Health” may sound like a consumer health information tool, but it’s not. Announced this week (GovHealthIT story) by the Office of the National Coordinator for Health IT (ONC), it’s a new initiative which plans to make clinical information available to researchers nationally, to study population health. The project charter is here.

Query Health is a big step in the promise of health IT: to give us a good picture of how we’re all doing, and understand how to improve, in a fact-based way driven by data. We do have such comprehensive information about seniors, because virtually all their records go through Medicare. This has enabled research on elder conditions (such as prostate cancer and hip replacement) that simply hasn’t been possible for the sub-Medicare population. More on this below, but first, a word about how this fits the big picture of modernizing American medicine.

It’s Similar to HIE

Health Information Exchange (HIE) is a much discussed topic in health IT today. It’s the ability to move your medical records from one place to another, which will enable continuity of care between electronic medical record (EMR) systems. So, if you (or your child) show up in a hospital emergency room where you have not been treated before, your records can be accessed to help the physician know your medical history: allergies, medications, previous problems, health concerns, etc. HIE is obviously good for the patient, but it’s also good for the clinician: how can anyone perform to their best potential if they don’t have important information?

Query Health plans to use similar technology to pull together huge amounts of clinical data from disparate EMRs, to research public health problems, epidemics, efficacy of drug treatments, and monitor health trends. The initiative has several workgroups including: implementation, clinical, business and technical. Already there is broad participation from industry, providers and public health groups. Recently, they hosted a “Summer Concert Series” of presentations to highlight efforts around the country.

Will My Data Be Protected?

The plan is to use a distributed data model. What this means is that the data will not be centralized into one huge data warehouse. Rather, participating institutions will make de-identified data available upon requests by researchers (queries) to the network. The only data shared will be what’s needed for the specific study. In some cases only summarized data (totals etc) from each partner institution will be shared, further protecting individual level data.

What’s in it for e-Patients?

The research that comes out of Query Health will improve the information clinicians and e-patients have available to participate in medical decision making. As with any newly published medical information, in some cases it will surely enable patients to bring new information to their clinicians. This could add value to the care transaction without increasing clinician burden.

For instance, Query Health has significant potential for investigating disease. It can look at large populations and discover small changes, such as drug side effects which may not be discovered by other means for years. Studying disease and practice trends will help providers better understand effective treatments, growth trends in diseases and conditions, and in comparing treatments for a given condition (Comparative Effectiveness Research).

At this point, there does not appear to be a clear role for e-Patients within the Query Health initiative unless one is part of a technical standards group, provider organization or EMR vendor. But it’s an important initiative to keep tabs on, because it promises to deliver real patient-centered benefits – and that’s part of the promise of health IT.

John Sharp, MSSA, PMP, FHIMSS
eHealth blog: http://ehealth.johnwsharp.com
EMR Daily: http://paper.li/tag/EMR
Clinical Research Informatics, Cleveland Clinic, Cleveland, Ohio

The opinions expressed are my own and not those of my employer.

I’m taking the liberty of pasting in here an item from their latest e-newsletter, because it illustrates how they think and how things unfold as a result.
__________

Listening to the Patient Voice
How It’s Done at Platte Valley Medical Center

Including patients and families in the development of a truly patient-centered care experience formally took shape at Platte Valley Medical Center in 2008 with the formation of the hospital’s community focus group. Staff from clinical and non-clinical departments volunteer and are trained to participate in an interactive process to listen and respond to patients’ feedback through quarterly care-centered interviews. To date, we have completed eight sessions. Testimonies are then used to assist with critical problem solving, program development, and measure successes. Concrete action steps, developed with the patient and family, are used for house-wide staff training. Through a video presentation and newsletter, entitled The Patients’ Voice, hospital staff is invited to “Munch and Learn” sessions to hear patients’ stories and apply what they learn to their daily work.

Lessons Learned from our Patients’ Voice

• Typical is not Typical
• Patients Want to Learn More
• Patients Don’t Know the “Lingo”
• Working Together Makes a Difference
• Preparedness is Key
• “Little Things” make a “Big Difference”
• Communication is Key to Patient Perception

 Accomplishments / Outcomes:

• Improved listening skills and an openness to total transparency and collaboration;
• Overall HCAHPS rating has now surpassed the national average;
• We can measure care improvements with every testimony (i.e., hand sanitizer usage rates doubled after a patient expressed concern staff wasn’t using it enough.);
• Structured rounding has increased the early identification of problems and their resolution prior to discharge, decreasing post-discharge service recovery requests;
• Development of a new outpatient service request form ensures scheduling happens in accordance with information the patient is given;
• Extended hours in the ambulatory post surgical unit have led to satisfaction and comfort for both patients and nurses;
• Development and implementation of Total Joint University led to a decrease in the length of stay in those who participate in the program;
• Implementation of a cardiac support group is championed by two patients; and
• Clinical rounding on complex medical patients ensures an efficient and effective interdisciplinary approach to patient care.

“It is exciting and extremely gratifying to go through this process as a team and work together with patients and their families to create processes and improvements that, in the end, make real differences in our patients’ lives,” describes PVMC’s Vice President of Nursing Kurt Gensert.

My friend switched to another doctor who’s much more interested in partnering actively with patients – will discuss anything and even provided his cell number!

(My oral surgeon even gave me his home number. And he answers it.)

My friend said, “I’ve been thinking about e-patients a lot lately” as this unfolded. This is his/her first episode where the e-patient awakening (from past conversations) led to taking action in an empowered, engaged way.

I sent my friend a somewhat similar story from this blog, April 2009, about a longtime friend of mine, Elyse Chapman. It’s a classic. Please read it. This newly bereaved woman faced an apparent emergency, was absolutely respectful of her physicians and willing to do whatever it took, and then simply did what she could to explore her options. The outcome is inspiring.

Please read Elyse’s story – and the comment stream. It’s fascinating to look back and compare people’s views today (around here anyway) with how our community felt 28 months ago.

The FDA’s Risk Communication Advisory Committee has published a PDF book called  ”Communicating Risks and Benefits: An Evidence-Based User’s Guide.” It’s meant to help healthcare practitioners and researchers communicate their work with patients, care givers and the public at large. It’s a free download here (3MB) on the FDA’s website.

The 242-page book covers topics like goals of risk communication, evaluation, language to be used in the communication etc. Every chapter covers a summary of a chosen topic, drawn from multiple research papers on the topic, and includes additional resources for further research.

Some topics of interest to e-patients:

• The chapter about the language to be used in patient communications, written by Musa Mayer, the well-known breast cancer survivor and patient advocate.
• Chapter 17 is about Shared Decision Making, which we talk about a lot on this blog and on the SPM members listserv.
• Chapter 18 on health care news coverage is by Gary Schwitzer of Health News Review. He talks about how medical journalists tend to exaggerate the benefits and minimize potential harms.

This is a must read for all doctors and medical researchers. Please share with your friends and colleagues.