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Health 2.0 goes to Washington: Aretha Franklin would be proud

Carol Torgan, Ph.D. — Wed, 16 Jun 2010 13:40:56 +0000

There were several themes that resonated throughout the recent Health 2.0 Goes To Washington conference. Two of the most powerful and provocative ones centered on patients and data.

R-E-S-P-E-C-T
Patients want – and deserve – respect. The kind of R-E-S-P-E-C-T that Aretha Franklin favors. It’s simple: patients are at the center of the health care system and they should be heard and they should participate.

The Health 2.0 conference featured a patient on almost every panel as well as an outstanding Patient 2.0 breakout session. The amazing presenters are helping to redefine what it means to be a patient or a patient advocate. They are educated and empowered. They are active participants in their own health and/or the health of those around them. They demand access, information, and control, which are all the byproduct of respect.

“Content comes from the patient, it belongs to the patient, and it should be up to the patient to decide who to share it with.” – Regina Holliday

While there are very big issues on the table (such as access to medical records), often it’s the small signs of respect that can make a large and lasting impact. A few examples that were given:

Health care providers taking the time to write down a diagnosis or instructions, rather than just providing information verbally in a stream of polysyllabic words. (Regina Holliday)
Health care providers encouraging patients to use the web to set up appointments, ask questions, and interact, so, as Gordon Brown from Myca said, “the waiting room is wherever the patient is.”
Physicians tilting a computer screen that holds lab results so a patient can see their own information (Dr. Ted Eytan).

This message of respect clearly resonates far outside the conference walls. Recently a friend angrily said, “I walked into my doctor’s office, signed in, and no one at the desk even looked up to greet me.” This group clearly is not going to stand for this type of treatment. As moderator Gilles Frydman, founder of ACOR.org and ParticipatoryMedicine.com said, “These patients are not the old type of patients.” Cue Aretha.

Data, data, data
A second overarching theme at the conference centered on health data. The biggest buzz was generated by the newly launched Community Health Data Initiative (CHDI), highlighted by Aneesh Chopra, Chief Technology Officer (CTO), Office of Science and Technology Policy, The White House; and Todd Park, CTO of the Department of Health and Human Services (HHS).

The CHDI data set will ultimately consist of thousands of measures of health care quality, cost, access, and public health (e.g., obesity rates, smoking rates). It will include data produced for the Community Health Status Indicators, County Health Rankings, and State of the USA programs. Data will be available at the national, state, regional, and county levels, as well as by age, gender, race/ethnicity, and income (where available). This initiative is part of HHS.gov/OPEN, and is in search of a better name (vote here to rename the CHDI).

Useful health data abound, but tend to be tucked into nooks and crannies. The key is to “unlock the mojo” according to Todd Park. There is a growing spirit of accessibility, transparency and collaboration towards a big data ‘commons.’

Health data are much more than community health maps, mortality stats, and nucleotide sequences.

Data are in the random observations scratched in lab notebooks that will never be published in scientific journals, but that are being coaxed out in forums and conversations;
Data are in pharmacy records;
Data are in web metrics from sites such as Pillbox, Health Central, and Everyday Health;
Data are in the anecdotal information shared on sites like PatientsLikeMe and Sermo;
Data are in the art on easels and t-shirts. Data are on murals, such as those painted by patient advocate Regina Holliday;
Data are in the posture, tone of voice, and hand gestures of individuals sharing their stories via video on sites such as The Moment.

Health data are numbers and letters and charts and maps.
They are also images and sounds and body movements — or a lack thereof.
Health data are DNA misspellings and raised voices. They are MRI scans and wringing hands.

“Data need to turn into motivators for individuals and ROI for businesses.” – Esther Dyson

What health data are you sharing?
How are you going to change health outcomes with data?
What questions are you answering with the data from others?

Buzz about Health 2.0 Goes to Washington

Susannah Fox, @SusannahFox, e-patients.net: Health 2.0 DC: Passion & Execution at Scale
Gilles Frydman, @gfry, e-patients.net: Why a Patient 2.0 Panel at the Health 2.0 DC conference?
Jane Sarasohn-Kahn, @healthythinker, Health Populi & Mobile Health News: Patient Power Through Data Liberación
Krystle Kopacz, So Health, Health Central: Health 2.0 DC: Most Memorable Moments
Lygeia Ricciardi, @Lygeia, The Health Care Blog: Health 2.0 Came to Washington—And Now it Needs to Stay
Regina Holliday, @ReginaHolliday, Regina Holliday’s Medical Advocacy Blog: A matter of perspective
Ted Eytan, MD, @tedeytan, Still about listening: Health 2.0 DC and Ragan Health Care Communicators Summit
Matthew Browning, @MatthewBrowning, Your Nurse Is On: Health2.0 Goes To Washington-A Summary

Health 2.0 images and video

Leroy Jones, Jr., @TechnicalJones, Talking Technology: Health 2.0 DC ~ images of the day and video interviews
Cindy Throop, @cindythroop, Flickr: Health 2.0 Goes to Washington
Phil Baumann, @PhilBaumann, Video interview of Ted Eytan and Regina Holliday at Health 2.0 2010
icyou: Health 2.0 DC video interviews (search tag is “Health 2.0 Washington”)

Health 2.0 Resources
Health 2.0 Goes to Washington main site
Health 2.0 Conference main site
Twitter tag: #health2con

Available presentations from Health 2.0
Amy Romano (@midwifeamy) Maternity Care 2.0
Regina Holliday (@ReginaHolliday): Patient 2.0

TEDxPotomac: A River Runs Through It

Carol Torgan, Ph.D. — Tue, 01 Jun 2010 02:39:05 +0000

“The river is woven into our history. It graces our landscape. And in a modern urban environment, it is a reminder of our connection to the natural world, to ideas larger than us, and to our past and future.” – Patrick Smith, TEDxPotomac Organizer

The inaugural TEDxPotomac drew its name and inspiration from the Potomac River. Ideas surged and ebbed and flowed and branched.

The word cloud above highlights actions and ideas passionately conveyed by speakers and participants throughout the day. Some concepts that resonated:

Humans have a basic need to collaborate. [Berit Oskey]
We need context to give meaning. Find something in your world and discover its name and learn something about it. [Bob Corrigan @bobcorrigan @eolpm]
The difference between first and second place: Do one more thing one more time. [Josh Sundquist @joshsundquist]
Engage people. Share results. Ask for feedback. Listen. Repeat. [Craig Newmark @craignewmark]
Redesign your expectations of what is possible. [Yoko K @yokokami]
Data is power. Information is power. [Shannon Hader]
Foster accountability over scapegoating, dispersion of power over concentration of power, transparency over anonymity. [Frances Moore Lappé @FMLappe]
Live your life in pursuit of what makes you want to jump out of bed in the morning. [Warren Brown @cakelovewarren]
Excellence touches people deeply [Steve Moore @readysetdc]
Civility is a big deal. Be nice. [Craig Newmark @craignewmark]

And from the final talk of the day highlighting the theme of rivers and water:
Water is life. We are all environmentalists. Water connects us all across the globe. [Alexandra Cousteau @acousteau]

Thanks to the organizers, speakers, sponsors, and other participants for sharing their time, energy, and passion.

TEDxPotomac Resources

TEDxPotomac site
TEDxPotomac on Twitter @tedxpotomac #tedxpotomac
http://twitter.com/tedxpotomac/attendees-2010
TEDxPotomac on Flickr
TEDx site (x = independently organized TED event)
Main TED site

TEDxPotomac buzz

Image generated by Wordle http://www.wordle.net/

New Year’s Resolutions: The Magnetic Poetry of TEDx MidAtlantic

Carol Torgan, Ph.D. — Sat, 02 Jan 2010 01:45:08 +0000

This word cloud represents the essence of the messages of the inaugural TEDx MidAtlantic event as culled from my scribbled notes. The speakers were amazing role models, and their messages, which were so passionately delivered, words to live by.

In the true spirit of TED, the terms cut across numerous disciplines, including technology, arts, medicine, business, health, entertainment, and design. As I reviewed my notes, it struck me that the key messages represent a wonderful sort of magnetic poetry mosaic from which New Year’s resolutions can be crafted.

The theme of the TEDx MidAtlantic event was The Power of Stories. I’ve selected five words that spoke to me to build personal resolutions and craft my 2010 story. They are empower, execute, listen, acknowledge, evolve.

What 5 words would you choose to craft your 2010 story?

To start your new year with a dose of inspiration, check out videos of the talks, which are available at both TED and TEDx MidAtlantic. Some of my favorite TED talks include:

For more insight into the TEDx MidAtlantic event held in November 2009 in Baltimore at the Maryland Institute College of Art (MICA), check out these reviews:

Duende: TEDx MidAtlantic. (A wonderful ‘visual recording’)
GrayMatter Minute: TEDx MidAtlantic, Eggs, Bones, Cows and Social Media.
Jim Doran: TEDx MidAtlantic. (The ‘top five favorite talks’ represents a perfect list of videos to watch and then craft 2010 resolutions)
Stellargirl: Inspired by TEDxMidAtlantic. (Key phrases that capture the event essence)
Christiana Aretta: Visual High Notes from TEDxMidAtlantic. (Stunning photos that convey the passion of the speakers)

Related posts:

Image generated by Wordle, http://www.wordle.net/.

Bench Top Roundup: Nobel Edition

Carol Torgan, Ph.D. — Fri, 09 Oct 2009 14:57:10 +0000

Dr. Marshall Nirenburg in his office with molecular models. He shared the 1968 Nobel Prize in Physiology or Medicine for his work on deciphering the genetic code. (I had the honor of working in the Laboratory of Biochemical Genetics at the National Institutes of Health, where Marshall is laboratory chief.) Photo courtesy of National Library of Medicine Profiles in Science.

Here’s a roundup of recent thought-provoking, amazing, and/or just plain cool items that are worth a look. In this week’s Nobel edition we celebrate the awarding of the 2009 Nobel Prizes.

Can you hear me now?
“Hello, you’ve won the Nobel.” A chat with Gunnar Öquist, the man who makes The Phone Call. From Seed Magazine.
“Then, the phone really started ringing. It was a reporter from The A.P. who said she was in front of our apartment and wanted to get a picture of me. I said, ‘I’m in my pajamas.’ She said, ‘That’s exactly the photo I want.’ I said, ‘But you’re not going to get it.’” A brilliant interview with Martin Chalfie, 2008 winner of the Nobel Prize in Chemistry, who slept through The Phone Call. From The New York Times.

Sidewiki
Are you familiar with Sidewiki? If not, brush up with these thought-provoking posts.
Been Avoiding Social Media? It Just Kicked In Your Door, The Scholarly Kitchen
Google SideWiki: How to Brace Yourself for a Communications Bitch Slap, Phil Bauman
A Google colonial sideswipe, Andrew Keen of the UK Telegraph
Martin Frank, Executive Director of the American Physiological Society, points out via Twitter that Sidewiki could allow for commentary along side research articles. (@ExecDirectorAPS)
Make sure to watch the demo video and ponder the implications. What are your thoughts?

Stick figures
Watching life unfold as a social network where every link is a human relationship and every circle is a waistline. “The Buddy System: How Medical Data Revealed Secret to Health and Happiness,” from Wired. Includes stunning data visualizations.

4 billion served
“More than 4 billion [cell phones] are now in use worldwide, three-quarters of them in the developing world.” From The Economist special report on “The power of mobile money.”
4.1 billion SMS messages are sent daily, according to the latest Semi-Annual Wireless Industry Survey results from CTIA-The Wireless Association®

Art imitating life
Anatomical illustrations by Fernando Vicente that merge science and art and add a dash of fashion. They are reminiscent of Andreas Vesalius’s classic 1543 De Humani Corporis Fabrica (this link is to an amazing ‘touch and turn’ version of the book.)

Fat body = skinny wallet
NPR interview with Safeway Inc. CEO Steve Burd, about the company’s wellness incentive program. Employees receive a discount on their health insurance if their body mass index is below 30, the number over which people are considered obese. (Here’s a BMI calculator so you can see if you qualify for a discount.)

Don’t bother with the CliffsNotes
“There was no rule book, we just did what we thought was interesting and might prove fruitful. You can’t write a book on how to do that.” Dr. George Smith, 2009 winner of the Nobel Prize in Chemistry, in “‘Masters of Light’ Get Nobel,” a wonderful article in The Wall Street Journal.

Choreographing Cells: Dance Dance Evolution

Carol Torgan, Ph.D. — Tue, 16 Jun 2009 02:24:56 +0000

What do you get when choreographers interpret scientific papers that interpret our cells choreography? A Science Dance Match Up Challenge.

In a challenge recently held by the American Association for the Advancement of Science (AAAS), four professional choreographers were paired with four scientists to create dances based on peer-reviewed scientific research. Individuals were invited to read the abstracts of the articles, watch the dances either live or online, and then try to match the science to the dance. The entire event was conducted as an informal research study to see if modern dance encodes science.

Those who watched the dances performed live, rather than online, were much better at matching the dance with the research, according to the results. “Being part of a live audience focuses your attention in a way that staring at a lonely computer screen never can. It’s equally true of art and science,” said John Bohannon, in his AAAS Gonzo Scientist column. (For science geeks, here’s the raw data).

The winning live audience was the University of Vermont, which beat out a global range of institutes that included McGill University in Montreal, CeMM in Vienna, The Science Gallery in Dublin, and Harvard. The New York Time’s Tierney Lab blog even took a turn, challenging readers to take the Dancing Science Quiz and tabulating results.

“Sun Starved,” shown below, is one of the dances from the Science Dance Challenge. The dance was choreographed by Chloe Jensen, working with researcher Dr. Sue Lynn Lau on the paper, Loss of ARNT/HIF1β Mediates Altered Gene Expression and Pancreatic-Islet Dysfunction in Human Type 2 Diabetes. Cell 122, 337 (2005).

Cell dance
While the choreographers created an amazing body of work, another type of choreographed dance – albeit one without an audience – simultaneously went on inside each of the cells within the dancers bodies.

“The Inner Life of the Cell,” the video above, illustrates the dance taking place inside a single white blood cell. It was created by XVIVO, a scientific animation company. Clearly the medical illustrators are also choreographers. They just sport high tech software rather than leg warmers.

Enjoy the dances.

So you think you can dance?