Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video.

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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?

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