Well, seek and ye shall find: this just arrived via Twitter, forwarded to us by Susan Carr, editor of Patient Safety and Healthcare Quality magazine. From the good people at CDC:

I especially love that they posted (at http://www.cdc.gov/CDCTV/HandHygiene) all sorts of ways to use this resource: the embeddable code for the video, downloadable versions of the video file, a PDF transcript, and an overdubbed Spanish version (with Spanish transcript).

Hey hospitals – let us know when you’ve made this (or an equivalent) available to your patients!

(HIE is Heath Information Exchange. The State HIE program is described here.)

Claudia says:
————–

“Here are the critical skills we are looking for:

• Passion for advancing health information exchange to improve health and efficiency and interest in being part of a driven, creative, fast-paced team
• Deep understanding of market and trends in HIE from a strategic, business and technical standpoint including exchange approaches (directed exchange, query-based models, claims networks)
• Expertise in strategic options, technical and standards requirements and policy levers for achieving meaningful use information exchange requirements including lab interoperability,  e-prescribing, care coordination and public health and quality reporting
• Trust framework and requirements for health information exchange
• Ability to work collaboratively with state leaders to develop responsive, viable strategies to rapidly advance HIE capacity and enable providers to achieve meaningful use
• Mission-driven, adaptive, collaborative, intellectually curious and results-oriented”

—–

The job posting will be posted soon. Contact her at Claudia.williams [at] hhs.gov.

Caremark called her this morning. The conversation went something like this…

Caremark: “Hi, this is ****** from Caremark. I’m calling about a recent order. Can I get you to verify your name, date of birth and mailing address?”

Ms. S: “I’m sorry, but how do I know you’re from Caremark? You called me.”

Caremark: “I understand that, but I need to verify this information with you before I can tell you what I’m calling about.”

Ms. S: “You called me. I don’t know if you’re Caremark or someone phishing for account information from me. Why you don’t you tell me the information you have, and I’ll verify it’s correct.”

Caremark: “Sorry, due to HIPAA regulations, I can’t do that in order to protect patient privacy.”

Apparently Caremark is completely unaware that calling someone out of the blue and asking them to “confirm” publicly-accessible personally identifiable information is really not a legitimate way to operate. It violates the common wisdom that any security expert will tell you about identity theft — never give out personally identifiable information on the telephone or in email if you can’t confirm the identity of the person asking for it.

How did this pass Caremark’s best practices group? Is this any way to run a company in the business of dealing with sensitive health data and patient records?? Asking people to violate the cardinal rule of keeping your personal information private.

Nonetheless, apparently needing to meet their hourly customer service quota, the Caremark customer service representative proceeded to tell Ms. S what he was calling about anyway — even though he had no idea who he was actually talking to.

Caremark: “So anyway, the reason I’m calling is that we see you have a refill pending with us, but we need you to pay the balance on this account before we can process your refill.”

Ms. S: “Yes, I tried paying this online, but it wouldn’t let me. It said the order was ‘in process’ or something like that, and I couldn’t pay it online. ”

Caremark: “Well, I’d be happy to accept your credit card information on the phone right now so we can take care of this matter.”

Ms. S: “Again, for the third time, I don’t know who this is. Do you honestly expect me to give out my credit card information just because someone calls me and says they’re with a company I do business with?”

Caremark: “I’m sorry you feel that way. We can’t process your order until we receive payment.”

At this point, from the tone of his voice, the Caremark representative was apparently annoyed Ms. S. told me while relating the story. She saw he didn’t really understand the issue at hand, and probably wouldn’t get any further by trying to point out the problems in asking people for information like this when they initiate the phone call.

Ms. S: “I understand that. Maybe you should upgrade your website to let it accept payments even when an order is ‘in process.’ Anyways, I’ll call the customer service line at my convenience or send you a check.”

Caremark: “Okay. Thank you.”

Ms. S: “Goodbye.”

What an unsettling phone call. They “understand” HIPAA, but apparently don’t understand personal security best practices.

Good Security Practices for Personal Information

Conversations like the above should never occur with a company entrusted with our health data and personal information. It demonstrates a complete lack of understanding of social engineering and the phishing attacks that most people receive every day — because it is a perfect example of a good social engineering attack. If someone wanted to, they could make 100 similar phone calls and I’m certain gain credit card information from at least one or two of those individuals. Without ever having to offer some sort of confirmation that they were indeed Caremark.

Caremark should change these customer service practices immediately. They entice people to provide personally-identifiable information without knowing who they are talking to. Worse, they encourage customers to also provide a stranger with their credit card information over the telephone to someone who called them.

Customers should never reveal any personally identifiable information to anyone who contacts them by telephone or email. Even if that information is correct, all it demonstrates is someone who is (a) either legitimate or (b) has searched public records (e.g., did their homework) in order to perpetuate the scam. And of course, it goes without saying, never give your credit card information to an individual who contacts you via the telephone or email. If you want to take the person up on their offer, call the customer service telephone number listed on a recent bill. That way you can be sure.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: E-patients, Cyberchondriacs, and Why We Should Stop Calling Names.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

• 46% of American adults had access to the internet (now: 74%)
• 5% of U.S. households had broadband connections (now: 66%)
• 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.”

Talking about people Googling for health info is boring. Talking about how health is becoming social online is interesting — even exciting. People are sharing and critiquing what they find. If they don’t find what they need, they are creating it.

In short, the data – Pew Internet’s and others’ — are quite clear that the online health revolution is over and that use of digital tools in tackling health problems is the natural state of affairs. Many of those who are involved in the effort to understand this shift believe that now is the time to build the new civilization.  Those who have studied the data and watched the struggle to call this phenomenon by an appropriate name think that means calling people who are part of this widespread phenomenon what they are: People.  They believe that the older labels like our “health seekers,” Harris Interactive’s “cyberchondriacs” and even Tom Ferguson’s “e-patients” now are less than helpful and accurate. They believe the right word is simply “people.”

Let’s talk about what this means — here in the comments or on Wednesday.

For more background on this discussion, please see:

Brian Reid’s post: It’s Time to Retire ‘Cyberchondriacs’

Jen McCabe’s post: The Redefining Patienthood Project Launches – Aims, Goals, and Many, Many Questions Ahead

Kevin Kruse’s post: What do you mean, “e-patient”?

Amy Tenderich’s post: “Patients” versus “Health Care Consumers”? Both, If You Ask Me

Dave deBronkart’s post: When the Patient is a Yahoo

My posts: Googlers vs. e-patients vs. cyberchondriacs and Cyberchondria: Old Wine in New Bottles

And from a different sector, also struggling with terms as they re-invent themselves:

Alex Howard: On Language: Putting Government 2.0 in Context

The current speaker is Lisa O’Connor, VP of Nursing at Boston Medical Center. She just showed this four minute safety awareness video, produced by Quantros. Much of its content will be familiar to our readers here (the frequency of medical errors and hospital acquired infections), but I’m posting it here because of its good, concrete, specific actions every patient should know. That part starts around 2:30. (My highlights below.)

Empowering “teachables”:

• Your participation counts
• Learn more – get educated
• Empower yourself
  • Do your research before going to the hospital or when visiting your doctor
  • Understand every procedure
  • Know everything about your prescribed medications
  • Ask lots of questions
• It’s your life – get involved

If you want to give someone a very quick introduction to being a more cautious patient, try this quick video.

By the way, MITSS does magnificent work, helping not just families but clinicians who are involved in medical errors. We have a cultural mythology that clinicians should be perfect, and good lives can be ruined by presuming that punishment is always appropriate. MITSS founder Linda Kenney experienced a significant medical error, and the next year she and the doctor formed this wonderful organization to provide support services to people involved, and to help people learn about patient safety and quality healthcare. Their annual fundraiser dinner is November 4 in Boston – please participate.

Sadly, academia and broken peer review are also linked to our tenure system. We need to fix that.

I hate to condemn with a broad brush: many academics care deeply about better patient care and believe – genuinely – that tenure is a good thing. As Wikipedia describes it today, tenure “protects teachers and researchers when they dissent from prevailing opinion, openly disagree with authorities of any sort, or spend time on unfashionable topics.” But sadly, the vast majority of academics acknowledge that an even more powerful benefit of tenure is pretty damn good job security. Tenure has much more to do with money (lifetime job security) than academic freedom.*

Tenure and traditional peer review are joined in a pernicious union that should be smashed if universities are to be trusted to promote the public interest through good, published science and medicine. In the “publish or perish” environment of academic medicine, candidates for tenure are generally ranked not on how much information they create (by research or invention) or how well they teach (which counts for just about nothing), but by the prestige of the journal where they publish. It’s a system that might have made sense when a journal’s reputation was regarded as a proxy for an author’s scientific rigor and integrity. No more.

With the Internet, information is distributed efficiently and effortlessly. Reputations are created – and destroyed – quickly. Crowdsourcing experts review articles to improve their quality. Articles themselves aren’t published and forgotten, but continually curated over time. The old publishing and peer review model is obsolete in this environment.

In an excellent article this week in The New York Times, journalist Patricia Cohen describes a number of experiments to improve peer review:

• Katherine Rowe, a Renaissance specialist and media historian at Bryn Mawr College, worked with the prestigious 60-year-old Shakespeare Quarterly to crowdsource/review articles by a panel of invited experts. The reviewers “were invited to post their signed comments on the Web site MediaCommons, a scholarly digital network.” Others could add their thoughts as well, after registering with their own names. “In the end 41 people made more than 350 comments, many of which elicited responses from the authors. The revised essays were then reviewed by the quarterly’s editors, who made the final decision to include them in the printed journal, due out Sept. 17.”
• “Today a small vanguard of digitally adept scholars is rethinking how knowledge is understood and judged by inviting online readers to comment on books in progress, compiling journals from blog posts and sometimes successfully petitioning their universities to grant promotions and tenure on the basis of non-peer-reviewed projects.”
• “Clubby exclusiveness, sloppy editing and fraud have all marred peer review on occasion. Anonymity can help prevent personal bias, but it can also make reviewers less accountable; exclusiveness can help ensure quality control but can also narrow the range of feedback and participants. Open review more closely resembles Wikipedia behind the scenes, where anyone with an interest can post a comment. This open-door policy has made Wikipedia, on balance, a crucial reference resource.”

Journalist Cohen also nails the tragic and under-reported association between traditional peer review and tenure:

• “The most daunting obstacle to opening up the process is that peer-review publishing is the path to a job and tenure, and no would-be professor wants to be the academic canary in the coal mine. The first question that Alan Galey, a junior faculty member at the University of Toronto, asked when deciding to participate in The Shakespeare Quarterly’s experiment was whether his essay would ultimately count toward tenure. “I went straight to the dean with it,” Mr. Galey said. (It would.)

Well, good for the University of Toronto: Mr. Galey can get “tenure credit” and participate in an experiment to create high quality information. What a concept for a university!

Medicine isn’t a total laggard when innovating in this space. PLOS, several journals within the BioMedCentral group, and others, are experimenting with open, pre and post publication peer review. A growing group of medical publications – but still a tiny percentage – embrace open access, which makes articles freely available. U.S. federal law that mandates open access for research published with public grant money is speeding the trend exponentially.

Still, when you consider what’s at stake – healthcare, and at times a life-saving treatment – we should hang our heads in shame when one considers how slow medical publishers have been to improve peer review and access. And shouldn’t academia be leading the charge for better information rather than obstructing it through a system as self-serving and public-interest-damaging as tenure?

In more naïve times, most of us believed that the system of peer review used by trusted, traditional publications like The New England Journal of Medicine was our best bet for trusted sources of current medical information. Now we know better: numerous experts have provided extensive evidence that traditional peer review is unreliable. And using tenure to prop up the bad system is a black eye on our universities.

I have proposed³ that online Reputation Systems could be created to help assess the reliability of crowdsourced information, medical evidence, and pre and post-publication peer review. It’s just one idea, my horse in the race. Regardless of what we wind up with, here’s hoping that everyone who wants to improve health and patient care will innovate to fix our broken peer review system. And while we’re at it, let’s fix tenure, too!

^{* When you think about it, academic freedom and tenure shouldn’t even be linked: there are other ways (transparency, public exposure, good journalism by people who write about universities, even political pressure) that influence academic freedom more powerfully than tenure.  Return to reference}

Suggested Readings, Podcasts, and Websites

1. Cohen P. Scholars test web alternative to peer review. In The New York Times. Published: August 23, 2010. Retrieved 20:38, August 25, 2010
2. Smith RW. In search of an optimal peer review system. J Participat Med. 2009(Oct);1(1):e13. Retrieved 20:40, August 25, 2010
3. Frishauf P. Reputation systems: a new vision for publishing and peer review.  J Participat Med. 2009(Oct);1(1):e13a. . Retrieved 20:42, August 25, 2010&npsp; Return to reference
4. Frishauf, P, Smith, RW, Gruman, J, Green, L. Participatory evidence: opportunities and threats.  Podcast for J Participat Med. 2010(Aug); Retrieved 20:45, August 25, 2010
5. Frishauf, P, Smith, RW, Wager, L, Jadad, A, Adler, T. Peer review and reputation systems: a discussion. Podcast for J Participat Med. 2010(Aug); Retrieved 20:51, August 25, 2010
6. Rothwell, PM, Martyn, CN. Reproducibility of peer review in clinical neuroscience. Brain 123: 9, 2000 (Sept)
7. MIT Center for Collective Intelligence. http://cci.mit.edu/
8. Tenure. (2010, August 17). In Wikipedia, The Free Encyclopedia. Retrieved 19:28, August 25, 2010, from http://en.wikipedia.org/w/index.php?title=Tenure&oldid=379372335
9. Adler TB, Alfaro, L. A content-driven reputation system for the Wikipedia [PDF]. ACM 978-1-59593-654-7/07/0005. Accessed October 17, 2009. [Google Scholar]
 The group has released a WikiTrust extension for the Firefox web browser based on its research that is now available in beta and available at https://addons.mozilla.org/en-US/firefox/addon/11087 accessed October 2, 2009. A review of the extension may be found in Wired magazine at http://www.wired.com/wiredscience/2009/08/wikitrust/ accessed October 2, 2009.
10. Priedhorsky R, Chen J, Lam SK, et al. Creating, destroying, and restoring value in Wikipedia. ACM 978-1-59593-845-9/07/0011. [Reference to come.] Accessed August 12, 2009. [Google Scholar]
11. Frishauf, P. The end of peer review and traditional publishing as we know it.  Medscape J Med. 2008;10(11):267. Retrieved 21:35, August 25, 2010

“Charlie,” as we all call him, is a wonderful guy. He’s co-editor-in-chief of the Journal of Participatory Medicine and was Doc Tom Ferguson’s physician. He’s been walking this walk for many years, and here he shares his personal advice – not just for patients but for health professionals who want to learn this participatory thing.

(The “Joe & Terry” he mentions are our founders Joe and Terry Graedon of People’s Pharmacy, longtime Duke associates.)

An audio-only version is at bottom. Here are the videos.

Part 1


Part 2

Part 3

Part 4

Added August 23:
Audio Links (MP3 files):
Part 1
Part 2
Part 3
Part 4

The discussion about doctor’s notes might seem silly, since for many years we’ve had the right to go the medical records department and get copies of our records.  So all we’re talking about here is making that more convenient, for example, by letting you log into your online account and see the notes there.  However, this is much more than convenience, it is a cultural statement: we, the doctors, should sincerely invite you to read our impressions, our thought processes, our decisions; and learn from them, even question them.  While this is a powerful statement, we’ve gotten distracted by this artifact, the doctor’s note.

Instead we should focus on the communication it represents.  The goal is not to sneak into the doctor’s inner thoughts and see what he’s really thinking about me, rather it is to gain a deeper understanding of my health and add a channel of communication from the doctor whose precious minutes just aren’t enough.  (By the way, to those who fear doctors will no longer be able to write what they *really* think, I have two comments.  First, patients can already request copies of their records, so be thoughtful in your notes!  Second, I would consider supporting a separate area for comments that the doctor sincerely feels are in the patient’s best interest not to see and are only for other clinicians, similar to what’s done today for mental health records.)

What we should be focusing on here are the best ways for the patient to understand and remember the doctor’s guidance, including the Q&A that typically happens during the visit.  The doctor’s note hardly addresses this.  It’s designed for the doctor to communicate to other clinicians who will later care for the patient, and in practice it’s increasingly full of not-so-useful information included for billing purposes.  Sometimes the doctor will create a separate note explaining the plan to the patient, especially if his EMR auto-generates a template for this.  But this is uncommon, and it provides only a brief summary of the outcome of the discussion.

I encourage loved ones to take a tape recorder or video camera to their doctor’s appointments, especially ones where new or critical issues will be discussed like whether or not to have surgery or how aggressive to be in treating a cancer.  Most of us have experienced how little one actually remembers when fear or stress levels are high.  Being able to review the conversation again later can make a huge difference in understanding and better decision making.

As a doctor, does it make me nervous when someone wants to record our conversation?  Yes.  Because it holds me even more accountable to communicating clearly and taking good care of my patients.

(This post was cross-posted on Huffington Post.)

Come, ye economics buffs and algebra fans; get out your pencils and solve for x, n, and XX:

Whatever else the year 19XX is remembered for, it will — without a doubt — go down in history as a record year for medical expenses here in the United States. All indications are that before the calendar year is out, Americans will have spent $x (n% of the Gross National Product) on drugs, X-rays, surgery, physicians’ fees, laboratory tests, hospital overhead, health insurance, etc. That’s up from the [$0.3x] ([.7n%] of GNP) just 13 years ago.

Clearly, the medical establishment has become a threat to the average American’s budget (if not his health).

Ready? That was… 1978. Check the tiny numbers:

Whatever else 1978 is remembered for, it will—without a doubt—go down in history as a record year for medical expenses here in the United States. All indications are that before the calendar year is out, 216 million Americans will have spent $139 billion (8.6% of the Gross National Product) on drugs, X-rays, surgery, physicians’ fees, laboratory tests, hospital overhead, health insurance, etc. That’s up from the $39 billion (5.9% of GNP) medical care cost in 1965 . . . just 13 years ago.

Tom Ferguson was a medical student, and in the self-reliant era of the Whole Earth Catalog, he saw that patients could help heal healthcare by taking better care of themselves. In 1976 he’d started a magazine called Medical Self-Care. The text above appeared in Mother Earth News in May 1978, as the introduction to an 8,000 word interview with Tom.

The intro continues:

Clearly, the medical establishment has become a threat to the average American’s budget (if not his health).

Which is one reason why medical self-care—the idea that health care should, to some degree, be taken out of the hands of physicians and put back into the hands of consumers—has started to become so popular in this country over the past few years . . . and why a fourth-year Yale medical student by the name of Tom Ferguson decided—in the spring of 1976—to launch a magazine called (appropriately enough) Medical Self-Care.

To see the entire, original Doc Tom interview, click here. It’s quite a trip, as the hippies said: he dropped out of Reed College without a degree, joined VISTA (the domestic Peace Corps), entered medical school at 30 like Albert Schweitzer.

You’ll find all kinds of treasures, such as the story of how he asked first-graders what they’d like to hear, instead of gettin’ all didactic at them. And this, a very early indication of the patient responsibility aspect of participatory medicine:

After a while, I got to feeling—in treating some of these patients—like I was a mechanic working on cars that’d been wrecked by people who’d never learned how to drive. What was needed were not more mechanics . . . but a little drivers’ education.

And this:

…You have to decide what you mean by “health care”. What people get trained to do in medical school is diagnose and treat disease, and a lot of times we tend to call this “health care”. In fact, it’s illness care. …I think that one reason self-care is getting to be so popular now … is that consumers are starting to see professionally delivered illness care for what it is.

And, near the end, this:

A friend of mine …  is an M.D. who no longer practices any illness care. He only practices wellness care, on a fee-for-service basis. If you go to see John when you’re sick, he’ll refer you to another physician for diagnosis and treatment! … John’s goal is strictly to evaluate and elevate his clients’—and he calls them clients, not patients—level of wellness.

Again,  to see the entire original interview, click here. And serious history buffs can see all ten Medical Self-Care columns in Mother Earth here.

(Yeah, I know, some of  you punks weren’t even born yet. Let’s see if you live this long.)

Well, that same data-spelunking expedition found this, even earlier:

"Doc Tom"in Mother Earth News, 1980

What You Should Know About Drugs – an interview by Tom in Mother Earth News with Joe and Terry Graedon. They had already founded the People’s Pharmacy, which is now of course a very successful website (and radio show and book series and online user forum…).

Twenty-nine years later the Graedons were among the co-founders of the Society for Participatory Medicine. Check out these early signs of defining an engaged, educated patient:
_____

FERGUSON: What is the most important fact to know about drugs?

GRAEDON: First and foremost, don’t ever focus your treatment efforts exclusively on such substances. If you have an ailment, first try to understand the problem, its causes, and its symptoms….

FERGUSON: [In a doctor visit] A lot of people would feel cheated if they got advice instead of medication.

GRAEDON: Absolutely. Many of the pressures for drug use come from the client. We live in an “instant” society today, and — when folks are ill — they expect instant relief. …

_____

How current – this summer there’s been much talk of how patients seem to think more treatment is better, regardless of evidence to the contrary. Continuing:
_____

FERGUSON: How can we break such patterns?

GRAEDON: People have to learn some basic clinical medicine for themselves . . . health workers need to step out of their authority roles a bit and share their own uncertainties and doubts . . .
_____

Here we are, a full generation later. It makes me wonder:

What parts of today’s conversations will show up thirty years in the future?

That interview was a long time ago: 14 years before the Mozilla browser blew open the info vaults in 1994. Look what was taking shape:

• The Whole Earth Catalog (1968-1998) was a project of Stewart Brand.
• In 1985 (our previous post), Brand and Larry Brilliant founded the WELL (“Whole Earth ‘Lectronic Link” (Wikipedia))  – originally dial-up, then it became the first internet-based bulletin board system (BBS).
  • BBSs were the beginning of people connecting over vast distances, which was the start of social networking.
• Consider what was bred on the Well. From Wikipedia:
  • “Notable items in WELL history include being the forum through which John Perry Barlow, John Gilmore, and Mitch Kapor, the founders of the Electronic Frontier Foundation, met.”
  • “Howard Rheingold, an early and very active member, was inspired to write his book The Virtual Community by his experience on the WELL.”
  • “Craig Newmark started his original Craigslist mailings there. …” (However, our Jon Lebkowsky was an early member of the WELL, and he thinks Wikipedia may be off on this.)
• When hypertext made massive data browsable  (1994), Tom published his famous triangle slides (January ‘95), showing how citizen access to information would turn healthcare on its head.

Heady times. What are we creating today? What will the world look like thirty years from now, in 2040? How old will your children be?

We believe that as patients, clinicians, health plans and government wise up about patient contributions, healthcare will become a much better place to be a patient – and a heck of a lot better place to work. That’s why we’re doing the work of developing these new methods, in the Society for Participatory Medicine.

Join us, or volunteer for teams if you’re already a member. Be part of the future.

I spend quite a bit of time writing up survey data, working with moderately large respondent pools (N=2,253 is the number of people who completed my last health survey; N=609 is the number within that sample who are living with high blood pressure, etc.)

This morning I decided to listen to Patient Voices: Scleroderma as I crunched some data (N=269 – people with lung conditions; N=193 – people with heart conditions…).  What struck me, as I listened, is that there is something powerful & human about listening to patients tell their stories. So many people are living N=1. Not just because they have a rare condition, not just because they’ve been told their case is unique, but because they simply are individuals going through life, and health is just one aspect of who they are.

This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

If you don’t want to watch all 70 minutes, you can skip ahead pretty easily once the video starts to load.

My remarks start about 3 minutes in (here’s my earlier post about what I said) and we begin discussing participatory medicine at about minute 10. The conversation takes off from there.

Roberto Ascione of paginemediche.it tells why his site is a meeting ground for doctors and patients. “There is no one recipe to Health 2.0… this is an empowerment of the physician-patient relationship which is the foundation of good health care.”

Jamie Heywood describes why PatientsLikeMe — founded with a goal of drug discovery — is data-driven and why patient communities shouldn’t “lose the narrative, but encode the narrative.”

Gilles Frydman then talks about how ACOR is “all about the narratives” of the 650,000 people who have used it.  He mentions The Moment when a patient realizes that they must participate in their care, when they realize that every cancer patient is “going through a clinical trial with an N of 1.” As he says, “Cancer is the opposite of algorithmic medicine. It is the opposite of having high blood pressure” (and therefore individual stories are so important).

At about minute 21 (if you want to skip ahead), Christian Angele of imedo.de, talks about how his site provides a forum for people to create a community around their own perspectives and experiences as a patient — personal stories that generate discussion.

Neil Bacon of iWantGreatCare.org states that community self-reporting is key to measuring clinical outcomes. In fact, he says, patient satisfaction is as important a measure as “hard” clinical metrics, such as infection rates.

You get the idea (and I haven’t even addressed the excellent demos and Alex Schachinger’s remarks).

What I want to ask is: Which way forward for patient communities?

For example, can we construct a decision tree for an organization starting a community?

• What are the organization’s goals? Emotional support? Symptom tracking? Drug discovery?
• What condition or disease are you tackling?
• What country or region will you recruit from? (Gilles suggested, at one point in the discussion, that patient engagement is more necessary in the U.S. than in Europe because of the significant differences in care delivery. Alex Schachinger suggested that Germans and Americans have different concerns and sensibilities about online communities.)
• Does the organization have the resources to “go heavy” and create a complex database-driven site, or will it need to “go light” and stick with simple discussion forums?
• What are the resources of the people you hope to attract to the community? Do they have stable broadband access? Or do they rely on a mobile device for connectivity?

Would the decision tree look different for patients trying to decide which community to join?

• Is your condition rare or relatively common?
• Do you want join a local group, to meet people in your area?
• Do you want to cast your net wide and get international perspectives?
• Are you a Quantified Self-type symptom-tracker looking for tools?
• Are you looking for emotional support and personal connections?
• What kind of personal information are you willing to share online?
• How tech-savvy are you? Related: What kind of internet connection do you have?

What questions should we add to these lists? What other issues come up when patients gather online, either in small, ad hoc groups or large, organized communities?

Note: If you paused the video, skip ahead to the closing statements from each panelist — they are pretty fantastic (minute 63).

Next in our series on my experience with OpenNotes, a project sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio.

This item has nothing to do with OpenNotes itself – it’s what I’m seeing now that I’ve started accessing my doctor’s notes. In short, I see the clinical impact of not viewing my record as a shared working document.

Here’s the story. 
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In OpenNotes, patient participants can see the visit notes their primary physicians entered. Note – primary, not specialists. I imagine they needed to keep the study design simple.

So, here I am in the study, going through life. Five weeks ago I wrote my first realization: after the visit I’d forgotten something, so I logged in. There it was:

IMPRESSION AND PLAN: …

3. Dermatologic. I think this is actinic keratosis and needs to be removed. Refer to dermatology.

I’d reported a crusty lesion on my forehead at the hairline. I’d had the same kind of lesion last year, and the dermatologist had frozen it off. (I have a history of skin cancer.) This time, the need to handle it had slipped my (ever slippery) mind.

Several weeks had already gone by so I emailed Dr. Sands (in the PatientSite secure portal) asking if I should insist on a fast appointment. He said no.

Notice that all this happened without any phone calls, because I could do it online. And that means it all happened sooner (act in the moment, no phone tag). And it captured the action in the moment when I thought of it.

[These are all well known advantages of being online - in other industries, but still debated in healthcare, sigh. How can an industry founded in science ignore evidence from other industries?]

Last Wednesday I saw the specialist. On my way out I found myself expecting that I’d go home and update the notes in PatientSite. Then I realized I can’t – because at present the visit notes are read-only.

More to the point, today the visit notes are an unstructured blob of text. I realized:

• In my record we should have an open issue, under dermatology (or “skin,” for users who want simple vocabulary): “Have dermatologist check out actinic keratosis.”
• This would essentially be just like a customer service issue-tracking system, or a software developer’s bug-tracking system, with data like this:
  • Reported by: Sands, D.Z.
  • Severity: unknown
  • Follow-up plan: see derm
  • Status (open)
• On that item, the specialist (or I) would add
  • Seen by Dr. Digby, Chestnut Hill, 8/4. Lesion is gone.
  • Status: resolved.
• As with customer service systems, I could filter my view various ways: Open Issues, Dermatology History, date ranges, etc.
  • All the software to do this has existed for many years, folks.
• If this doesn’t seem important for you yourself, think about it as empowering you to take care of your child, or an aging parent. All we’re asking is that we let our doctors help us help ourselves. With fewer phone calls.

Note: there are two big deals here -

• My ability to add notes, even if another doc isn’t in the system.
  • I’m still constantly annoyed that doctors at my hospital aren’t required to be on PatientSite, because they’re not employees, they’re independent businesses, and that business relationship trumps better care. In essence although it looks like an office of my hospital, it’s really just a “doctor mall” with shared office services.
  • So I can’t secure-email them and I can’t make appointments online – that still requires phone calls when the office is open. Ugh. And sometimes it requires dealing with an impatient clerk. Double-ugh.
• Issue tracking. At present the visit notes might just as well be a Word file: one big blob of text.
  • No, actually, a Word file can include indexing, headlines, pictures, boldface for emphasis, table of contents… today’s system is more primitive. (How do doctors function with tools like this??)
  • So today it’s just like a plain text file (Notepad or TextEdit).

In short, the medical record should become a joint working document among my providers (all of them) and me (a collective noun, including my circle of supporters).

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I welcome comments from people (patients, providers, vendors) whose systems do have these features. Vendors, just keep it factual, non-commercial, please – link to fact sheets or demos on your website.

(If this sounds like patients climbing into the driver’s seat, well yeah.)

Participatory Evidence: Opportunities & Threats

From the site’s description:
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In medicine, evidence separates modern scientific treatment from Folk Art. Medical evidence is acquired through observation, experimentation, and information sharing in scientific peer-reviewed journals. When new treatments are used, millions of patients around the world provide additional evidence for what works and what doesn’t.

In our new world of instant information exchange and empowered patients, how are clinicians and empowered patients challenging traditional ways to collect, evaluate, and publish evidence? What evidence should we trust? This program, moderated by Peter Frishauf, frames the issues and proposes at least one solution to sorting through the evidence puzzle.

Guests:

Peter Frishauf, Founder of Medscape
Richard Smith, M.D., Director of the Ovations Initiative [and editor for 13 years of the British Medical Journal]
Jessie Gruman, Ph.D., President, Center for the Advancement of Health [and Co-Editor In Chief of the Journal of Participatory Medicine (JoPM)]
Larry Green, DrPH, ScD(Hon.), Professor of Epidemiology and Biostatstics, UCSF Helen Diller Family Comprehensive Cancer Center [and author of a piece in JoPM]
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Click to go listen and learn.

"Doc Tom" Ferguson - 1985

Through some obsessive Googling, I ran across an early bit of Tom’s writing, an article in Mother Earth News about Medical Self Care, the journal he started. And here are the “seven laws of self care” he saw.

In 1985.

• The First Law: You are already your own doctor. …Research shows that people provide their own illness care between 80 and 98% of the time…
• The Second Law: Lay people could do even more for themselves if they had better access to currently available health tools, skills, support, and information. …
• The Third Law: Our most powerful health resources are our spouses, families, friends, social networks, and communities. …
• The Fourth Law: Health is not the absence of disease. There is a continuum of wellness-illness states. Prevention means focusing on health concerns and behaviors while you are still on the wellness side of the spectrum, rather than waiting to act only when disease or disability occurs. …
• The Fifth Law: What’s best for your health depends —at least in part—on your belief system. Health is a part of culture, and different people are products of different cultures. It has been well established that the remedies people believe in are much more effective for them. …
• The Sixth Law: The principal goal of a health care system should be to help people take care of themselves….
• The Seventh Law: Health is a regenerative function. Your body is like the soil: If properly cared for over a long period of time, it can replenish itself and provide a bounty beyond imagining. But if ignored, depleted, and exploited, it will soon lose its ability to sustain life. …

That was a quarter century ago, and I’m sure that at the time some of it sounded wiggy, too much left-over Woodstock in the water. Well, today we have a lot more research, and science has figured out things that were unknown then. For instance, re our belief systems, in his superb book The Anatomy of Hope Jerome Groopman MD describes (Google Books) how Naloxone, an opiate blocker, also blocks the placebo effect.

Most mind-blowing, to me, is the Second Law: “Lay people could do even more for themselves if they had better access to currently available health tools, skills, support, and information. ” That was 1985, folks – it’s easy to see why his mind was blown when the Web came along in 1994. Less than a year later he created his famous “triangle slides,” (see Steal These Slides), which showed how the Web would turn healthcare on its head.

For us who try to anticipate the future, it’s a thrill to get a glimpse of a real visionary’s vision. Love it!

The civil rights movement has not finished its job.  In the list of people who are routinely oppressed today we find patients.  I have come to understand that physicians, and I am one, oppress patients not willingly, not deliberately, not intentionally.  Oppression of patients is also the result of actions by healthcare administrators, payers, pharma, device manufacturers, and governments, perhaps often unwillingly.  At its simplest, oppression (and coercion, and injustice) results from patients staying in the dark about their own health state, their available options and the relative merits of each, the extent to which services can flexibly meet their needs, and the extent to which uncertainty, ignorance, and impotence remain part and parcel of modern medicine.

We sometimes keep patients in the dark about these things, because we may be in the dark as well. Sometimes we know implicitly that services can be rendered differently to different people (think about the extent to which, if you are related to a health professional, you decide or not to disclose this relationship to other health personnel when you seek services). Sometimes we have interest in keeping things the way they are (think about physician and patient-blogger relationships with big pharma).  Sometimes we can’t know better because the research process that should generate new knowledge is aimed at regulatory approval and market share, not at meeting existing and latent needs of patients.  Sometimes, the translation of research that could make a big difference in the efficacy and safety of health services is not prioritized because it is difficult to express its value, if not for an improve patient experience.  Sometimes patients are oppressed unwillingly through our actions, but sometimes it is the logical result of a corrupt medicine, one that has interchanged its means (power and money) for its ends (betterment of patient health).

The oppressed, the patients, are often in a vulnerable position by virtue of their health problems and the consequences these bring to the rest of their spheres of living and by the extent to which they are kept in the dark, without accurate information, without unbiased guidance, without being able to exercise their judgment and responsibilities.  Found in that position, many accommodate so that they can get the care that is offered (think about how many pay without complaint when asking for copies of their own medical records; or how they silently tolerate unfair labels in those very records).  This is the passive behavior of the oppressed.  That should be no more.

Many institutions are working hard to promote the voice of the patient.  They have patient and family councils with the intent of having patients affect the planning and offering of services.  Many clinicians and researchers are working towards ways to better share information and decisions with patients.  Others are working on enhancing the transparency and accountability of health organizations, research, and practice.  But these are early days.  The need for an emancipation of patients, i.e., the radical modification of certain (not all) aspects of healthcare that oppress patients, is before us.  Only a joint effort by health professionals, healthcare institutions, and empowered patients will help us achieve the goal of a patient revolution.  The outcome will be healthcare that meets the needs of patients, with patients at the table as fellow humans, as informed and empowered people, as full partners with health professionals, as collaborative drivers.  The outcome will be fair, just, open, transparent, equitable and participatory medicine.  That is why I joined.

About the author

Victor M. Montori, MD, MSc (Twitter: @VMontori; Wikipedia) is Professor of Medicine, Director of Healthcare Delivery Research, and Consultant in the Divisions of Endocrinology and Healthcare and Policy Research at the Mayo Clinic, in Rochester, Minnesota, USA.  He is member of the Editorial Board of the medical journals Annals of Internal Medicine and Medical Decision Making, and is on the Steering Committee of the Minnesota Shared Decision Making Collaborative and of the International Patient Decision Aids Standards.  His professional activity includes consultations with patients with diabetes and research into how we know what we know and how best to apply it in practice at the KER Unit (Knowledge & Encounter Research) at Mayo.  He lives in Rochester, MN with his family.
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Welcome, Victor! It’s great to have your energy and vision!

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