Now that he’s become an MD and is teaching, he’s taking it to the next step, inviting e-patients to talk directly to his students via YouTube. He posted an invitation on his site, and he welcomes cross-posting it here and elsewhere.  Upload to YouTube, tagged with “med20course.”  (That’s a zero after the 2.)

Here’s famed SixUntilMe diabetes blogger Kerri Sparling’s contribution. It’s got almost 800 views already.

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The Institute of Medicine’s recent workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine.

At first I was dazzled by the names on the agenda and those whispered to me by Gilles Frydman, founder of ACOR.org and my cancer consigliere: Duke, Georgetown, MD Anderson, Emory, Annals of Internal Medicine, Vanderbilt…

Lynn Etheredge, the first speaker, urged the assembly to engage in system-wide learning: incorporate experiences of patients as well as clinical trials; capture data, generate evidence. Amy Abernethy drove home the point, putting patients at the core of the system. Carolyn Clancy talked about how transparency and collaboration yield better research. I began to wonder why they needed my patient participation data.

Then I noticed something odd: Few of the other speakers mentioned patients until the very end of their remarks, almost as an afterthought.

When it was my turn at the podium, I talked about Flickr, YouTube, Facebook, MySpace, and how people use each one of these tools to create, gather, and share health information. And I told them that I’d been using Twitter all day to bring my network into the room. The discussion was not limited to this assembly, but potentially thousands of people who were learning about their plans. I explained that there already exists a rapid learning system: social media.

As I returned to my seat I was surprised to hear Paul Wallace’s advice to the audience:

If all of this sounds scary, remember your oncology training: denial, anger, bargaining, acceptance.

Scary? My data? This is normal, every day internet use, especially compared to what they were about to hear from Gilles Frydman of ACOR.org, Simone Sommer and Josh Sommer of the Chordoma Foundation, and Jamie Heywood of PatientsLikeMe.com. Patients telling each other where to go for treatment, tracking drug side effects for post-marketing surveillance, owning their own data, refuting their doctors’ advice, raising money to direct their own experiments. They are the radicals, the superheroes, the wild-eyed optimists who believe they can transform medicine from the bottom up.

But there was no denial, anger, or bargaining by anyone in the workshop. There was listening. There were smart questions. There was learning. I was now dazzled not by the names on the agenda, but the minds which were so open, curious, and, well, rapidly learning.

The philosophies driving participatory medicine will only transform health care if everyone can connect them to their current practice. That’s why I tweeted:

I love that someone had the courage to ask @gaiJen “what is web 2.0″ at #iom – no shame in being old school, esp if we listen + learn

And:

Rock star cancer researchers + data mavens imagining new pathways to cures – they’re 2.0 and they don’t even know it

Social media is simply the current expression of patient activation and engagement. But this time e-patients are part of a larger cultural change that assumes access to information, enables communication among disparate groups, and expects progress.

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Since Twitter is not a good archive, here is a record of the tweets from Monday, October 5, so you can get the gist of what was being said:

@SusannahFox: 

[First up: Lynn Etheredge of the Rapid Learning Project at George Washington Univ.]

Rapid-learning system for cancer requires a more data-rich environment than we have now

Engage system-wide learning: experiences of patients as well as clinical trials; capture data, generate evidence

Great potential for rapid learning system: public sector + enterprise research + professional societies + networked patients

New term (to me): “in silico” research – complements and adds capabilities to in vitro and in vivo – a data-rich future

Why cancer? Urgency for better data in complex pursuit. Motivated patients. Opp’ty to transfer lessons to other diseases

[Next: Amy Abernethy of Duke Comp Cancer Ctr]

Abernethy: patient-centered research: engage patients at the core of the system

Carolyn Clancy, AHRQ: clinical uncertainty leads to treatment variation (read: overtreatment)

Clancy: if you think your care will be different bc you are a health pro, your denial system is intact (we must change the system) ["Re-tweeted" twice, meaning two people liked it enough to repeat it for their followers, magnifying the quote's influence.]

Clancy: current care system is not consumer-friendly – even the best-wired consumers can’t connect to best care (it’s not on web)

Clancy: Boomers’ skepticism and me-first attitudes could transform health care (“what do you mean it’s not my record?”)

Clancy is the voice of evidence, laying out the reality of country’s problems like a stern, kind principal on report card day

Transparency is key to building trust (not just listening sessions in DC). Collaboration yields better research[RT'd once]

Clancy: AHRQ posts research questions online and asks, Are we framing this right? Comments will soon be posted also

Clancy: we must leverage excellence: why does Wisconsin deliver best care? We don’t know, but we need to find out

Bill Todd of Georgia Cancer Coalition: data collection is a significant challenge but measurement is only path to improving quality

Joseph Lipscomb, Emory: detailed 15-min. remarks on clinical data ends with 5-second mention of patient-reported outcomes data

This just after Etheredge, Abernethy and Clancy framed the day with patients at the center

Lipscomb made a good point tho – his focus is on collection + linking of data that already exist

Hmm, I wonder if anyone can demonstrate that patients are ready to help build the evidence base? (cough @gfry @jamie_heywood)

Bill Stead, CIO of Vanderbilt Medical Ctr, calls for paradigm shift in health IT based on his field work w NRC – wowing w insights [RT'd once]

Stead: calling for data liquidity, architecture that can evolve, shared records for clinicans and patients – srsly hi-powered [RT'd once]

Ken Buetow: good data tools are like night vision goggles – they don’t create sight, they help you see what’s there [RT'd once]

Stephen Edge, Roswell Park: National Cancer Registry is essential: if you don’t know what in goes you don’t know what outcomes

Btw, this panel is Open Source, Open Access Platforms: cloud computing for cancer data sharing and evidence generation

Todd echoed Edge: Oncology Analytics is new registry dept name, reflecting rising importance + recognition of data’s power

Can’t do justice to these presentations – if health data + evidence are your thing, look up these speakers http://bit.ly/1brefs

Chalapathy Neti, IBM: Information tech can relieve cognitive overload at point of care (and yes, you need to pay docs to use it)

Ken Buetow, Nat’l Cancer Inst.: Culture eats strategy for lunch (and creating a learning system like caBIG requires culture change)

Buetow: “Army of Women” – new generation of consumer-directed breast cancer research – 300k pre-registered for studies, goal is 1M

Charles Friedman, ONC, HHS: Meaningful Use and All That Jazz (that is, they are improvising, but they’re experts, I think)

Laugh line by Harold Sox, editor emeritus of Annals of Internal Medicine: “even, God forbid, include patients as peer reviewers”

Sox is a proponent of Comparative Effectiveness Research and notes it is a challenge to study decision-making by doctors and patients

@jamie_heywood:

talking about cancer it – more conversations need to have the word patient in it

@gaiJen:

policy quote of the day: “culture eats strategy for lunch.”

Paul Wallace makes an observation: 30 years ago, MDs were oracles, telling patients what to do. Now MDs are collaborators w/ patients.

Susannah Fox attempts to explain the uses of social media to a room full of people well over the age of 35.

@jamie_heywood:

Paul Wallace re @Susannahfox“if you think this sounds scary remember you oncology training – anger barganing denial aceptance

@SusannahFox:

.@gfry presenting ACOR’s history – listservs were early social networks for science + observations of daily living + passion for life

@gaiJen:

ACOR Communities is a website aggregating existing online cancer communities and resources in a single site. http://www.acor.org/

@gfry quote: “social networks of patients suffering from a rare disease may often be the best source of high quality information.”

Simone Sommer quote: “If you want to understand the problems of the health care system, talk to a parent of a child with cancer.”

@SusannahFox:

Simone Sommer, Chordoma Foundation: if you want to solve problems in cancer care, ask a parent of a child w cancer (esp one w an MD!)

Josh Sommer, Chordoma Fnd: undergrad at Duke, on path to be an engineer – cancer transformed him into medical researcher

Sommer: in rare disease, clinicians sometimes “throw drugs at it to see if something sticks” (we can do better)

Sommer: dangers of patient to patient learning: survivor bias; may depress clinical trial recruitmt; anecdotes are not data

@gaiJen:

“if all else fails, throw drugs at the problem until something sticks” = an example of ‘chaotic learning’. it works but not efficient

Jamie Heywood, founder of Patientslikeme.com, states that anecdotes are not data – but they CAN be.

patients have the right to their aggregate patient data in real time.

@SusannahFox

.@jamie_heywood honors the Sommers’ accomplishments, but says they should not have had to build what they did: medical system #fail

PatientsLikeMe changing expectations for clinical trial reporting and patient access to data [RT'd once]

@gaiJen

the future of hlth care will include an explosion of social data – patient centered, personally provided & fully identified health data

is there a place for patient privacy in @jamie_heywood ‘s vision of the biomedical future? should there be?

no health care revolution without open data systems. True privacy constraints on data result in data that is worthless. #panelcomments

At the end of the IOM conference, attendee turns to me and asks me what ‘twitter’ is….then asks me what web 2.0 is…O_o

@ctorgan:

@SusannahFox Re: dangers of patient 2 patient learning- survivor bias; depress clinical trial recruit; anecdotes not data #iom – agree.

@SusannahFox:

@ctorgan Yes, today’s #iom workshop reinforced the need for evidence base – patient contrib to research must be held to high standards

Now it’s your turn: what do you think is in store for the future of medicine, and in particular, cancer research? Am I wrong to be so optimistic about what happened at this workshop? Or do you agree that participatory medicine has the potential to break out all over?

A lot of money is about to be invested in health care, particularly into health information technology (HIT). Does this mean that when your health care provider(s) implement electronic medical records, you will have quick and easy (and free) access to your health data?

Ummm, not necessarily.

It may seem like a no-brainer, but we need to make sure President Obama knows that we – as patients, future patients, caregivers, citizens, and taxpayers – really care about having access to our health information. On Wednesday, July 1, 2009, Obama will be holding an online town hall meeting on health care reform to answer some common questions. People can submit questions via Facebook, YouTube, and Twitter (twitter hashtag: #WHHCQ)

President Obama will answer common questions. If enough of us ask, maybe we will get a verbal commitment from Obama to support our health data rights.

Here are a couple of twitter examples:

Obama, will #hcreform support my right to access and use #myhealthdata ? #WHHCQ

Hi Prez Obama! Will #hcreform support humans’ access to their own health data, kinda like how they access their pet’s data? #WHHCQ

Definition: Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable. Similarly, people upload video from their cell phone to YouTube because these individual video streams are computable.

The world in 2009 is very different from anything we have seen before. The connected age has invaded all societies and the possible repercussions are just starting to emerge, driving us into the age of consequences.

In the last 10 days we have witnessed how Twitter and YouTube have become the ultimate enemies of the Iranian leaders who tried to use the classical tools of democracy to hide a dictatorship. Once and for all we know that transparency trumps opacity! The Iranian  government’s tight control of media and the Internet has spawned a generation adept at circumventing communication roadblocks, making the country ripe for a technology–driven protest movement.

The helicopters, the Basajis and all the other tools of mass fear have failed because individuals in Iran have found a way to own and control the data that is important to them at this point. The demonstrators have been using simple text messaging and videos shot from their cell phones to collect, document and transmit the visual data elements that are helping us understand the health of a nation, in real time. Their tweets, use of hashtags and uploaded images have made all of us instant witnesses. In just a few days, they have shown all of us that citizens data rights are the defining rights of our era and that data hugging is no longer possible and will cause the failure of established systems trying to control & limit data flows.

At the same time, much action is taking place in Washington DC about healthcare reform. Not a day passes without the President or a very senior member of the administration mentioning that we, as a Nation, must reform the healthcare system this year or risk a future similar to GM. Pretty grim assessment, if you ask me.

There is a general consensus about the tools that should be used to succeed in this reform. Everybody talks about the Electronic Health Record and the need to create systems that in the end will be interoperable at some level, so that the data flows can be facilitated. The experts are talking about an horizon of at least 6 and maybe 10 years before these systems are implemented and active in most of the US.

I cannot help but be shocked that young students in Tehran have, today, the ability to transmit, freely, in real time and against all odds, instant reports, images & videos (just 3 types of data element), while we, sitting in a country that prides itself to be the most advanced in the world, cannot, in general, have access to any of our health data without delay and at no cost.

I cannot accept any longer, the excuses coming from within the system to explain why I am denied this access. And neither should you!

Too many of the blog posts I have written over the last year document failures of knowledge, science, medical care and recording of all medical events because the patients have never been given, as a matter of fact, access to their health data! e-Patient Dave data transfer story provided the last proof we needed to show that healthcare reform cannot happen as long as the patients are treated as anything else than the most important stakeholder! And healthcare reform in the contemporary world cannot happen until the most important stakeholder has access to his/her health data. Just today an article showed that patients are often not told about abnormal test results.

As a Nation it is time to stand up and call for the universal recognition of our rights to access, whenever we want, a copy of any or all parts of our health data. Read the Declaration and think about it, please! It is written to start a national conversation about a topic that is fundamental and often misunderstood or just unknown. The endorsers come varied horizons, from individuals, not-for-profit organizations and  corporations, large and small. We are all in agreement that these health data rights are basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient.

Please join us in making sure we have all the possibility to improve the healthcare system by taking ownership of our health and of our health data! Endorse these Rights!

Today I proudly join together with a group of leaders across health care working to establish this Declaration of Health Data Rights. The text of the declaration is clear, appropriate and extraordinarily important to us all.

A Declaration of Health Data Rights

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data
• Have the right to know the source of each health data element
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
• Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.