Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) Yet, we’ve always had remedies whose actions aren’t understood; we just know they work. Even aspirin was used for a century without understanding it. And here’s a line I read today:

“Should I refuse my dinner because I don’t understand the digestive system?”

It’s by Oliver Heaviside (1850-1925), about whom Wikipedia says, “Although at odds with the scientific establishment for most of his life, Heaviside changed the face of mathematics and science for years to come.”

The quote is in the Pulitzer Prize winning book The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee MD. Emperor is cancer’s “whodunnit” story, centuries of efforts to understand it and treat it. And not in that order.

In the 1900s brutish early treatments (no more sophisticated than leeching) became more scientific. Inevitably some researchers then urged that we not try new treatments on humans until we know exactly what cancer is – basically, don’t move forward until we’ve got it figured out – with confidence. But meanwhile, people were dying.

As I wrote three years ago on my personal blog:

On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?

In my own case, my oncologist says there’s a 50% chance my disease will return, and there’s no way to predict which one I’ll be.

So we live, with uncertainty.

Participatory patients and physicians alike should accept that medicine is uncertain. Jerome Groopman MD’s excellent How Doctors Think even says 10-15% of all diagnoses turn out to be wrong, on autopsy. Fittingly, his epilogue it written to the (engaged) patient – how to discuss things anew with your doctor when the treatment isn’t working.

Science keeps pushing toward certainty, and disease doesn’t wait. Perhaps if we acknowledged the difficulty of diagnosis, and if more physicians were allowed and willing in our culture to express doubt, patient questions would be welcome and we could work more collaboratively.

By the way, the Wikipedia article on Heaviside has a different version of the quote: “I do not refuse my dinner simply because I do not understand the process of digestion.” Which to believe? Googling says the Wikipedia version is on 1,310 web pages and the book’s version is only on three.

What do you do in the face of uncertainty? How many sources do you check before you decide to move forward?

His own post on Embargo Watch: “More thoughts on ASCO: How the embargo policy can lead to hype”

Gary Schwitzer‘s post on the HealthNewsReview blog: “A prime example of the problem with some TV physician-’journalists’”

Here’s an intriguing abstract that begs for further study: “Accuracy of cancer information on the Internet: A comparison of a Wiki with a professionally maintained database.”

Gilles Frydman makes two excellent points about it:

“It would be interesting to know which 10 types of cancer. Wikipedia pages in long tail are usually pretty lacking in depth.”

“PDQ exist in 2 versions: Patient & Health Prof. Abstract doesn’t say if one or both kinds compared to Wikipedia.”

Anyone out there have access to the full study? Please post what you find.

Shortly after I discovered this blog (February ’08) I recognized two strong precedents from earlier in my life: Dr. Benjamin Spock’s Baby Book (opening words: “Trust yourself. You know more than you think you do,”) and Our Bodies, Ourselves.

Dr. Spock was published a few years before me. Our Bodies,  Ourselves came along a year after I graduated college.

About its origins, Wikipedia says:

The health seminar that inspired the booklet was organized in 1969 by Nancy Miriam Hawley at Boston’s Emmanuel College. “We weren’t encouraged to ask questions, but to depend on the so-called experts,” Hawley told Women’s eNews. “Not having a say in our own health care frustrated and angered us. …”

Sound familiar?

These pioneers were empowered, irrepressible, and willing to do what they had to, to be engaged in their own care.

I was just out of college in Boston (where it was published). It was a heady year: the Vietnam war was still going on, the establishment was being overturned in every way possible, Vice President Spiro Agnew resigned in disgrace, the Watergate scandal started (leading to Nixon’s resignation in ’74). And now what – women want to look at their genitals?? Unheard-of: in those days, that stuff down there was known as “You know, down there.”)

Well, no more. One thing OBOS taught women was how to examine themselves with a speculum. (Twitter friend @MeredithGould recalls “fond memories of fighting to own [one].”)

Women looking at their anatomy?? Without a doctor present! Good heavens, could they handle the knowledge??

That echos the concerns of some people today who worry that patients can’t handle medical details. Our Declaration of Participatory Medicine begs to differ:

Thomas Jefferson had a radical notion: When the people are well-informed, they can be trusted to govern themselves. This powerful idea worked to end our rule by the King, but at the time it didn’t apply to slaves and it didn’t apply to women. It STILL doesn’t apply to patients. And it should.

Empowerment won: when Our Bodies, Ourselves launched, consumer books on women’s health were rare;  today an Amazon search shows, 31,986.

And now it’s time to give back, people. The book is entering its next edition in 2010. (Our guest blogger Amy Romano is on the editorial team!) Executive Director Judy Norsigian writes:

Like other valuable “social benefit” organizations, Our Bodies Ourselves is facing a very difficult financial period and needs your support more than ever. As we are approaching our 40th anniversary of the first publication of Our Bodies, Ourselves, we hope that you will visit our website, consider all that we do now, and contribute to our longstanding, non-commercial, public interest work that has benefited millions across the globe. I also hope that you will forward this message to others who might value and support what we do.

All contributions large and small greatly appreciated:

http://www.firstgiving.com/OurBodiesOurselves

Thanks so much.

If you value “e” – if you have a vision that all healthcare will evolve as far as women’s health has, because of these pioneers – I hope you’ll pitch in. Even despite these tough times and being on half salary I just gave $50. Your $5 to $5 million will help, and will honor the work they continue to do.

(And if you haven’t joined the Society for Participatory Medicine yet, do that too! Individuals are just $30 a year!)

Simply put “Participatory Medicine (PM) is a model of medical care acknowledging the central role of the e-patients in medicine and requiring their active participation and engagement, because health professionals can no longer do it alone.”

As we put the finishing touches to the Journal of Participatory Medicine, it is ever clearer that various stakeholders have different views of what constitute participatory medicine. In particular, our different backgrounds are shaping how far we accept the central role of the engaged and networked patient in the brave new world of PM.

Using various social media, I have tried to iteratively refine the initial definition crafted in Feb 2008. The Wikipedia definition remains the single most quoted definition, but I have come to believe we should provide the much simpler one, above. As Alan Greene, MD commented in the crowdsourced definition of PM: “The ‘participation’ in Participatory Medicine isn’t just a patient participating with a doctor, but a patient participating in improving his or her own health, in constructive collaboration with a network of others with the same goal.”

On October 22, 2009 we will officially launch the Journal at the yearly Connected Health Symposium from the Center for Connected Health. You should read “Why the Journal of Participatory Medicine?” to understand the scientific reasoning behind the journal. But you should also understand that the initial push for the Journal was a patient advocate longtime call for the need to publish scientific data about PM, in a format clinicians could understand and validate, in order to convince them that engaged, informed and networked patients are significantly advancing  the modern practice of medicine and are a valuable resource instead of being a significant nuisance.

If you want to understand how far we have advanced in 18 months, have a look at the Wikipedia discussion page about PM! Here is a nice quote from Apr, 9, 2008:

Not that I’m unsympathetic to this article’s perspective. I am. But this reads like advocacy to me. A review of Wikipedia:What_Wikipedia_is_not shows two problem areas for this article:

• Wikipedia is not a soapbox.
• Wikipedia is not a crystal ball.

Thus, Wikipedia articles should not speculate about the future, and should not advocate for a particular perspective that can’t be construed as fact. To my reading, this article does both of these. It speculates about the future of Participatory Medicine, advocates for a concept of Participatory Medicine that is not widely shared, and ties Participatory Medicine to the e-patient concept, which is also not widely shared. But moreover, this particular nexus between Participatory Medicine and e-patient has little support I can find, outside of this Wikipedia article itself.”

Today, this viewpoint seems so disconnected from reality. Every day my email box fills up with Google Alerts about e-patients and participatory medicine. A growing number of opportunists are trying to cash on the fast growing popularity of the 2 terms. Most significantly no one huffed and puffed at this year’s Health 2.0 conference and at the Institute of Medicine when I said that the Patient is the most underutilized resource in the health care system.

Why Call It Participatory Medicine?

A year after my soulmate, Tom Ferguson MD, passed away, the e-patients scholars working group, the group he had created, seemed to wander aimlessly, without a cause or a concept that could help us move further along the route of patient self-empowerment. With our fast approaching yearly meetup, we needed a topic that would rejuvenate the common passion we had developed collaboratively, over a period of years, while providing feedback to Tom while he was writing the seminal white paper “e-patients: How they can help us heal healthcare.”

This was just one of a confluence of events, pushing us to come up with a memorable term. Health 2.0 had recently been coined and I was very aware of the theoretical and commercial impact that the term web 2.0 had in a short time. I had missed the first Health 2.0 meeting because, at the time, I did not see how the ACOR cooperative of cancer online communities could be categorized as Health 2.0 or social media or described with the fast growing set of Web 2.0-related terms (I was obviously mistaken, as we can see now). But it was getting clear that what could be observed in our online communities and the many other online communities I was following was a true transformation of the medical delivery system, with a growing importance of the informed patient, both as an individual and as a member of 1 or more specialized online communities. At the same time, I was noticing the evolving role of the medical online communities and their seemingly unlimited power to constantly innovate, in meaningful ways, in areas as diverse as information reporting or Patient-Driven Research (PDR).  What was common in all these stories was the active participation of the patients or their caregivers at all levels of the care process. That’s when I discovered the definition of Participatory Design in Wikipedia, which I’ll reproduce here. Sorry, it is long, but as you will see, it is relevant!

“Participatory design is an approach to design that attempts to actively involve the end users in the design process to help ensure that the product designed meets their needs and is usable. It is also used in urban design, architecture, landscape architecture and planning as a way of creating environments that are more responsive and appropriate to their inhabitants and users cultural, emotional, spiritual and practical needs. […] It is important to understand that this approach is focused on process and is not a design style. For some, this approach has a political dimension of user empowerment and democratisation. […]

Participatory design can be seen as a move of end-users into the world of researchers and developers, whereas empathic design can be seen as a move of researchers and developers into the world of end-users. There is a very significant differentiation between user-design and User-centered design in that there is an emancipatory theoretical foundation, and a systems theory bedrock (Ivanov, 1972, 1995), on which user-design is founded. Indeed, user-centered design is a useful and important construct, but one that suggests that users are taken as centers in the design process, consulting with users heavily, but not allowing users to make the decisions, nor empowering users with the tools that the experts use.

Now, simply replace design with medicine and users with patients and reread that definition!

We had been unhappy with the term patient-centered care for years because, it has been usurped by many health professionals to protect the status quo while paying lip service to the patient, as a member of the care team. But suddenly, here was a term that could really describe the central role of the patient in the contemporary medical world where we are all networked and have instant & usually free access to more sources of scientific and medical information than most health professionals even know.  And it was a virgin term. No Google presence! Whatever definition we chose, we had the rare chance to “own” the term and its definition.

How does PM relate to Healthcare Reform?

“Health care should be safe, effective, patient-centered, timely, efficient and equitable.”

This Institute of Medicine (IOM) call to arms was written in 2001, before most of the IOM members had ever thought, looked, let alone understood the real impact of the Internet on the democratization of medicine and its ability to disseminate widely and virally new medical knowledge to a fast growing audience of concerned lay people.

In the mid 90’s a concerted effort took place at the IOM to confront the need of fundamental changes in the American health care delivery system. It resulted in the formation in June 1998 of the Committee on the Quality of Health Care in America. Charged with developing a strategy that would result in a substantial improvement in the quality of health care over the next 10 years, the Committee produced 2 seminal reports. The first, about patient safety, published in 2000, “To Err Is Human: Building a Safer Health System” concluded that tens of thousands of Americans die each year from errors in their care, and hundreds of thousands suffer or barely escape from nonfatal injuries that a truly high-quality care system would largely prevent. The second “Crossing the Quality Chasm: A New Health System for the 21st Century” laid out the basis for profound reform. As the patient safety report was a call for action to make care safer, the second report was a call for action to improve the American health care delivery system as a whole, in all its quality dimensions, for all Americans.

The Committee proposed six aims for improvement to address key dimensions in which the current health care system functions poorly.

• Safe—avoiding injuries to patients from the care that is intended to help them.
• Effective—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit (avoiding underuse and overuse, respectively).
• Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
• Timely—reducing waits and sometimes harmful delays for both those who receive and those who give care.
• Efficient—avoiding waste, including waste of equipment, supplies, ideas, and energy.
• Equitable—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socio- economic status.

While the Committee was working hard to produce these 2 reports, millions of Americans were learning to use the Internet to get the answer the system was unable to provide.  A real and potent example of a disruptive technology, the explosion of patient-generated Internet resources, associated and facilitated by the revolutionary availability of all scientific abstracts helped citizens to develop solutions that matched their problems. For the first time ever, new healthcare resources had been developed first by asking patients what they needed, instead of trying to force them to use services and tools that had been created to satisfy health professionals.  This historical confluence of the birth and growth of Internet-mediated patient-centric resources with the realization by the Nation’s medical elite of the need to improve the 6 aims has certainly facilitated the acceptance of PM has a piece of the healthcare reform puzzle.

What is the future of PM?

Some of us believe there can be no effective healthcare reform, unless the patient is brought at the table and most reform elements are rethought with the patient seen as the center and raison d’etre of the health care system. This can only happen if the American society really accepts the concept of the engaged and networked patient as an equal member of the care team. Our success in producing a valuable journal focused on these issues will be fundamental to promote this agenda.

Please help us make the Journal the great resource we believe it can be and PM will gain much importance in helping the Nation to achieve any of the six aims for improvements. As the IOM said:

“A health care system that achieved major gains in these six dimensions would be far better at meeting patient needs. Patients would experience care that was safer, more reliable, more responsive, more integrated, and more available. Patients could count on receiving the full array of preventive, acute, and chronic services from which they are likely to benefit. Such a system would also be better for clinicians and others who would experience the satisfaction of providing care that was more reliable, more responsive to patients, and more coordinated than is the case today.”

Some of these aims can be uniquely achieved by letting engaged and networked patients/caregivers share and develop new collaborative tools and platforms to further learn and to share and disseminate that knowledge with others, lay or professionals.

It’s being hosted by Robin, the incredible patient who runs the Survive The Journey blog. She’s a member of the Society for Participatory Medicine (are you? Join) and she’s one heck of an e-patient: empowered and engaged in her own care, with a vigorous community around her.

For those who don’t know, here’s what the Grand Rounds “blog carnival” is about. Medical professionals, bear with us while patients learn. And of course, correct any errors:  

• Grand Rounds is a tradition in medical education (Wikipedia). “Rounds” is when the residents are led around to see patients in a specialty; Grand Rounds is more of a lecture format, where everyone comes together to discuss a particular topic.
• The blog version was started six years ago by emergency physician Nick Genes, who calls it “the weekly rotating carnival of the best of the medical blogosphere.” Each week a blogger is selected to host Grand Rounds, on the topic of his/her choice.
• The host asks people (that could be you) to submit existing blog posts that serve as good teaching material. (Or, often, people create a new post somewhere, and submit that.)
• The host then creates a post in his/her own blog, the equivalent of a lecture, you might say, which teaches the subject.
• A ton of people come from around the world to read it. Seriously.

As with real lecturers, the instructor’s style plays a role in the presentation.

• This week’s, on Pallimed, is easy-to-read text with category titles.
• Last week’s, by Dutch medical librarian Laika, presented it in the context of a tour of a librarian’s life.
• In June, the talented Barbara Olson of Florence Dot Com presented her “lecture” with a baseball theme. (We were delighted and honored that Barbara used an e-patients.net post as the “opening pitch”!)

Robin has a bug so we are thrilled to help her solicit. (It’s so wonderful that empowered patients are joining the Society, picking up the cause and carrying it outside this blog!) Here’s what to do:

• Patients: If you have a real-world story of how being empowered and participatory changed the outcome, or even changed your experience, go to Robin’s blog and submit it.
• Providers/Clinicians: If you have a real-world story of how an empowered and participatory patient changed the outcome, or even changed your experience … see previous item. :–)
• Philosophers, analysts, policy people, citizens: Robin is also welcoming posts about the concept of participatory medicine, its origins, its promise, etc.

In our case, if you have a story and you don’t have a blog, submit it here! Write me, ePatientDave at e-patients dot net. We’ll work to publish it here (quickly!) and submit it to Robin.

DO IT!  Go get your friends. Let’s make this invitation rewarding to the industry people who invited us.

The link to the survey is at bottom. But first, if you’re not up on what connected health is, get informed. Here’s a start.

The Wikipedia article defines it nicely:

Connected Health is a term used to describe a model for healthcare delivery that uses technology to provide healthcare remotely.

Connected health aims to maximize healthcare resources and provide increased, flexible opportunities for consumers to engage with clinicians and better self-manage their care. It uses technology – often leveraging readily available consumer technologies – to deliver patient care outside of the hospital or doctor’s office.

Connected health encompasses programs in telehealth, remote care (such as home care) and disease and lifestyle management, and is associated with efforts to improve chronic care.”

I’d add that it’s not just about chronic care.  In my grand semi-educated vision, we’d have all kinds of devices:

• My blood pressure machine already has USB and uploads data to my PC. (I want it to have wifi and upload data to my doctor.)
• My bathroom scale should do the same, eh?
• Why not let diabetics’ CGM devices (continuous glucose monitors) should upload their readings into their personal health record?
• Cardiac monitors could do the same. (An example that may or may not be on target is Holter monitors.)
• And so on and so on.

All that data would be online (just like your bank statement) and both you and your consultant/doctor could view it. And clever software could monitor it for you.

A key principle, in my view, is that automation works: things that are automated get done much more reliably than things that I have to remember and “get around to.”

There’s no better example of this in my life than computer backups. Over the years I spent over a thousand dollars on well-intentioned backup devices and software: Zip drives, external hard drives, tape drives. Mind you, I know the right way to do backups (full backup monthly or weekly, incremental in between, blah blah blah) but knowledge isn’t action. (In medical lingo I was a “non-compliant” backer-upper.)

Y’know what works for backup? Carbonite: you start it running and it runs in the background, continuously backing up your data over the internet. So, last November, when we visited a delicious B&B in Provincetown and I just happened to drop my computer on a gorgeous tile floor, I put in a new disk drive and all my data came back. (It took 3 days, but nothing was lost. It worked. I only had to reinstall my applications.)

So I’m like all over the idea of connected health gadgets that gather data and pump them out to elsewhere.

The survey is a dozen questions, and takes 5-10 minutes. You can start it and work your way through and stop and come back later. I did that, to let myself think.

Be aware, this is a business survey, so a lot of the questions about what factors will help or hinder adoption of the technology.  On some, I had to use “Other” and enter “I have no idea” or “There’s no one single cause.” Express yourself!

One last note: the final question is “In what way could Connected Health be most beneficial to you?” It’s an open text box, and you’re invited to type a personal note about your condition or particular interests, if you want. (That topic wasn’t designed into the survey, but they said we could use it that way, if we want.)

The survey starts here.

Thanks to MassMEDIC for including the ultimate stakeholder in the research, and especially thanks to researcher Vaishali Kamat of Cambridge Consultants, who met with me in Harvard Square one rainy Sunday for more than an hour and who returned today, inviting patients to participate in the survey.

DO IT! And go get your friends. Have them study up, think, and respond. Deadline is August 15.

p.s. If you become a Carbonite subscriber, tell ‘em I sent you so I get referral points toward my free toaster. And, be aware that their tech support is, well, offshore: a chat session yesterday started with the rep saying “I will defiantly help you with same.” (I replied “Are you angry?”) (Yes, I did.)  But we eventually got it done.

(For more details, please see the NIH press release, a Wikipedia project page, and a Wikimedia Blog post.)

The NIH communications team invited me to observe this continuation of the conversations we had started about participatory medicine in June and September 2008. It was amazing to be there to see these two learning cultures meet for the first time.

This was my first attempt at live-tweeting an event and I am grateful that I was joined by Jess Palmer and Craig Hicks.  Since Twitter is not a good archive, I will reproduce my notes here, from the first to the last, calling out my favorite quotes:

Event sponsored by NIH Office of Communications + Wikimedia Foundation #nihwiki

John Burklow, NIH: wake up call re health comm; Wkipedia is first stop for many; NIH is highest quality info

Marin Allen, NIH: we are all public servants, all want trustworthy medical info, shared goals are kismet

Marin Allen, NIH: Wikimedia setting up hotline for NIH editors

Frank Schulenberg, Wikimedia: Wikipedia does not work in theory, but only in practice.

Schulenberg, Wikimedia: NIH is first federal agency to host Wikipedia Academy

Schulenberg, Wikimedia: we hope to infect you with our passion

Jennifer Riggs, Wikimedia: We are lucky emissaries; mission-driven, most-visited site for info (comscore data)

(Event is being recorded for future trainings; NIH and Wikimedia photogs are capturing the 75+ attendees)

Riggs: “Wiki quality” means multiple POV but no opinions; experts can contribute, but so can others

(Not sure I got that last point right – I will ask + refine since it is potentially massive)

[@jesspalmer noted to me: I think Riggs said Wikipedia strives to have multiple *perspectives* and no POV. (If that's possible, it's hard to do)]

[Jennifer Riggs posted in the comments: "My statement: encyclopedia articles are best, (and Wikipedia’s strength includes) when people with multiple perspectives collaborate to write content with a neutral point of view (NPOV)."]

Tim Vickers, Wikipedia volunteer and scientist: scientific literacy is low, challenge for NIH and us all

Vickers: just published JAMIA study showing Wikipedia results in top ten of 80pct of health searches on 3,600 keywords

Vickers: #H1N1 article: traffic spiked on Apr24 at 1.3MM per day, leveled off to 30K (now only medical rival is vitiligo article bc of Michael Jackson

Vickers: Wikipedia medical articles should be summaries of literature; 60-70pct of diseases have an article

Vickers: our main rival is media (a comparison shows how shallow a MSM article vs the “web of info” in a Wkipedia article)

Vickers: articles vary in size and quality: 14k stubs in molec bio, 3k starts, up the scale to 29 “features”

First question from NIH: is quality correlated w article length?

Vickers: Best predictor of qual is number of times it’s been edited, also number of references

NIH q: what abt including dosages from PDR? First do no harm

Vickers: Wikipedia does not seek to replace health pro; aim to provide right info, within bounds

[@jesspalmer captured his point better: Vickers: An online encyclopedia can never replace the physician-patient relationship – that would be absurd]

NCI q: wary of anonymous editors

Vickers: Net is anon medium; we must scale, so onus is on cited sources, not personal credentials

NIH q: language and translation? Vickers: case by case by volunteers

NIH q: diverse audiences and accessibility? Vickers: broad overview – daunting task – teachers, not scientists do these well

Compare Wiki edits and scientific peer review? V: Remember that MSM is filter for sci journals – Wikipedia is third way, a bridge

NIH q: how deal w deleted comments V: called edit wars – bring in wider community, guided by mainstream sources, fair summaries

William Wedemeyer, Wikipedia editor and scientist: why contrib? Broader impact: science outreach and educ

Wedemeyer: collaboration w other researchers and educators – improve your lectures and other communications

Wedemeyer: WP articles are like Cell mini-reviews; personal authority counts for nothing; no original data

Wedemeyer: WP has “librarian function” that NIH could take advantage of

Wedemeyer: “See also” and “Further reading” sections are librarian functions

Wedemeyer: Wiki to print – anyone can request any assortment of articles and print book will be mailed

Wedemeyer: Selfless amateurs have begun the work. WP invites you, the top scientists, to join them

Wedemeyer: shocked by price of textbooks, many of his students can’t afford: can WP help?

Wedemeyer: led student project comparing WP vs Britannica on protein science (me: sorry, not convincing parallel to textbks)

Wedemeyer: As scientists it is our calling to provide knowledge to the world, I hope you answer that call

[@jesspalmer captured another quote: Wedemeyer: "Our wealth is about uncovering knowledge and sharing knowledge]

NIH q: tell more abt quality rankings. W: lists and images are easy to upload but don’t illuminate fully

NIH science writer q: inspired by your remarks bc what I do is perfect for the lead section and scientists can refine

NIH q: how to tell greatest need? WP: requested articles list – red links in articles

NCI q: editorial boards are our great resource, how can they contrib? WP: if text is in pub domain we can marry to volunteers

John Broughton, author of Wikipedia – The Missing Manual: what is a good article? Factually accurate, verifiable, neutral

Broughton: only info from a “reliable, published source” (me: what is defintion of published? @DocJohnG @gfry ran into this) [See: Wikipedia’s Arcane Rules Censor Health Information]

(Wonder if there are other exceptions for “notability” besides science and medicine?)

Broughton: Most vandals are unoriginal and easily caught

Broughton: NB: IP address is less anonymous than a registered username on WP

Broughton: “notability” defined by coverage – need secondary sources to prove – says not a prob for science, even #rare disease

Broughton: a good citation is like a godclass weapon on Wikipedia – removing your edit is deemed vandalism

Broughton: blogs are not as reliable, verifiable as a MSM source (likens blogs to selfpublished books) #fightingwords

Participation is coin of WP realm (reminds me of @PatientsLikeMe and other online communities that confer power to the active)

Broughton showing the WP Editor’s index to answer q re copyright

NIH q: is our website a reliable source? WP: (incredibly, I think he is saying no – will follow up)

Clarification: NIH website *is* credible source for scientific info, not for “self-promo” (NIH is the greatest!) info

Kevin Clauson emailed me a q which inspired great lunch convo: will NIH give scientists credit for contributions?

Burklow said NIH had no plans to formalize credit, but saw value; Wedemeyer and Vickers said credit for time spent is key barrier

Phew!

I loved receiving emails and direct messages of encouragement and questions while I was tapping away on my Blackberry, including some excellent exchanges with Kevin Clauson whose article, “Scope, Completeness, and Accuracy of Drug Information in Wikipedia,” was cited by Tim Vickers in his remarks. It was kind of a health geek, Marshall MacLuhan in “Annie Hall” moment for me (only in terms of pulling an expert into the conversation, NOT that Vickers was loud or obnoxious – quite the opposite!).

Social media, FTW!

If you use the term please stop here for a minute and let us know what it means to you.

I will summarize the responses and use the results to update the wikipedia page on Participatory Medicine.

Thank You!

“We cannot, however, continue to reject Wikipedia because we aren’t comfortable with the wiki process itself… To be quite frank, continually bad-mouthing Wikipedia to the very people who use it—successfully—makes us look a bit daft. It would be much more productive to teach [people] how to best use Wikipedia.”

I excised “colleagues, students, and parents” from the quote since I think you could swap in “patients,” “customers,” or “voters” just as easily.

Read the whole column by Chris Harris in the School Library Journal for more on how Wikipedia actually resembles the early days of the Oxford English Dictionary.