This is an amazing story. A man who suffered from anxiety for many years has run across the entire country of Canada.

His name is Wayne Cho.

His mission is to raise awareness for anxiety and depression, and eliminate the stigma around these illnesses.

His message is one of inspiration and hope.

Here’s what he wrote to his Facebook followers after the successful completion of his run last week:

Dear all,

With all my heart,
Wayne

Thanks Wayne, for your courage, and for touching so many hearts along your journey.

This week I got to attend the Institute for the Future (IFTF)’s Health Horizons Conference in San Jose. Kathi Vian invited me to join her wonderful panel on Building the Health Commons, along with Tori Tuncan of Lend4Health and Dr. Kelly Travers of MD Health Evolution. My slides on “Patient-generated data” are below, although I’m not sure they stand alone without me talking through them.

The trends and forecasts presented by IFTF for what healthcare will look like in 2020 were striking, inspiring, and cautionary. 100 people from all manner of health-focused organizations were there, sharing ideas and brainstorming “if only…” scenarios in Open Space sessions.

2020 Forecasts

Since the meeting was for IFTF clients, I’m not allowed to get into too many details, but I can talk about general trends. The most interesting trends for me had to do with the increasing role of commons in healthcare, the seamless and ubiquitous presence of sensors and health-related technology, and the challenges of making information actionable.

Video scenarios were presented for both positive and negative possible futures. Ted Eytan did a very cool presentation on kp.org, which has demonstrated amazing adoption. Bob Johansen talked about Ten New Leadership Skills for an Uncertain World. And around the room, I heard a lot of talk about Diabetes in particular, and incentives in general for how to encourage people to make positive changes for their health.

Quantified Selves

In the “if only we were all quantified selves…” open space session I led, people asked a lot of questions about what to track and what can be learned from tracking. The conversation wandered from epigenetics and Bayesian statistics to garbology (studying people’s garbage to see if they’re tracking truthfully) and gratitude.

One thing that surprised me was a question about how to track “being present” and how to measure the effect of “giving” behavior in your life. Applying quantitative principles to qualitative or spiritual behaviors and states would be an interesting study. Someone also suggested having the Quantified Self group agree to a collective experiment where we all track a particular thing for a defined period of time and compare our results - great idea!

We talked about what would happen if everyone had their genetic, health, and lifestyle data pooled together in a big open commons. While the challenges would be privacy, security, and effective analysis, the potential is to cure disease, understand behavior, and effect positive change for individual and collective health.

Now that’s an exciting future.

For all of you out there with headaches, this week is National Headache Awareness Week.

Here are some inspiring campaigns going on (and free stuff!) to celebrate everyone living with tension headaches, chronic headaches, migraines, and cluster headaches.

Wishing you a pain-free week!

American Academy of Neurology Foundation

The AANF has two websites to share for its “Buy a Brain” and BrainMatters campaigns:

https://www.TheBrainMatters.org/buyabrain
Buy a virtual brain online for as little as $5 through the American of Neurology Foundation in honor of a friend or family member. Your virtual brain will then float on the AAN Foundation’s wall of donations. Your donation will make a difference in the lives of people affected by a neurologic disorder because 100% of your gift helps fund vital research into tomorrow’s preventions, treatments, and cures for migraine, and hundreds of other neurologic conditions. You’ll also see Grey’s Anatomy recently picked the AAN Foundation as one of its favorite charities.

https://www.TheBrainMatters.org
TheBrainMatters.org is the American Academy of Neurology Foundation’s official website for patients and caregivers.  TheBrainMatters.org was re-launched in late April and features information on more than 250+ neurologic disorders, including migraine as well as some of the other chronic conditions listed on CureTogether’s website.

.

National Headache Foundation

The NHF has these links to share for its Migraine Millions campaign and National Headache Awareness Week:

Since 1993, National Headache Awareness Week (NHAW), sponsored by the National Headache Foundation (NHF) aims to educate people about headache causes, impact and available resources. The theme for National Headache Awareness Week is Chart Your Course to Relief. The NHF is launching “Headache U:  It’s all about YOU,” a new patient education program. The first tool of the program features an online headache care tool called “Chart Your Course to Headache Relief: a personal headache care tool” and can be found on our Web site, www.headaches.org. The tool helps sufferers discover their personal headache patterns and the resources necessary to improve their headache care.

The NHF is also encouraging you to support the Migraine Million campaign. We are rallying one million of the nearly 30 million migraine sufferers in the United States to each donate $1 for migraine education and research. The NHF uses 82 cents of every dollar donated to support the programs and services that we provide to improve the lives of headache sufferers. One dollar at a time, we can improve headache care! To find out more, please visit www.headaches.org, call toll-free 1-888-NHF-5552, or visit the NHF on Facebook, Twitter or YouTube.

.

Migraine Research Foundation

The MRF has a new initiative called For Our Children, to support pediatric migraine research. Definitely a great cause to support!

.

And the Free Stuff!

Who doesn’t love free stuff? Here are some statistics we’ve gathered, all reported by CureTogether migraine members:

Symptoms

Treatments

Triggers

Related Conditions

And the new Migraine Heroes book, first crowdsourced book on migraines. Tell your friends about CureTogether and ask Alexandra for a free copy!

We are excited to announce today the release of “Migraine Heroes: 271 People Share Their Experiences and Treatments.”
.

What’s Inside?

271 people share stories, symptoms, and resources
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
.

Please spread the word!

Blog or tweet http://www.curetogether.org/MHeroes/

All proceeds from Migraine Heroes go to fund the migraine data community at CureTogether.org.

.

What People Are Saying

“The best Observations of Daily Life (subjective, ‘real-world’) I’ve seen!” — Jen McCabe (@jensmccabe on Twitter)

“Interesting crowdsourced clinical data.” — Chris Hogg (@cwhogg on Twitter)

“The book is excellent! So many people suffer from this debilitating condition. The information in your book is priceless and will undoubtedly help many.” — Annamarie, a migraine sufferer

“This is great. I am just starting to really appreciate what awesome power CureTogether can have.” — CureTogether member

To order your copy, visit http://curetogether.org/MHeroes/

Thank you for your support!

Last week Daniel did a live podcast interview with John Mack for the Pharma Marketing Blog. He talks about how CureTogether got started and what patients are discovering on the site. Here’s the streaming audio below (about 15 minutes long).

.

At long last, we’re releasing recent videos of both of us speaking at the Quantified Self meetups.

Daniel gives a quick, early overview of CureTogether from December 2008, and Alexandra talks about who to trust for health information in March 2009.

Enjoy!

.

.

Alexandra Carmichael on trust and health information sources from Kevin Kelly on Vimeo.

In the live, ongoing Migraine study at CureTogether, 271 people have so far been surveyed for having other, co-morbid conditions. 186 (69%) of the respondents reported having at least one other condition. A chart of conditions co-morbid with migraine is shown below (click on the chart for a larger view). We define a condition to be co-morbid with migraine if more than 5 people reported having both migraine and the condition.

.

.Click on the graph above to see a larger version.

.

Here is a list of the conditions found to be co-morbid with migraine in this survey, in order of prevalence.

Anxiety (102 people)
Depression (98)
Back pain (85)
Allergies (75)
Insomnia (69)
Common Cold (69)
Irritable Bowel Syndrome (68)
Acne (61)
Vulvodynia (59)
Acid Reflux (55)
Bladder Infection (49)
Endometriosis (47)
Candidiasis (42)
Vulvar Vestibulitis (38)
TMJ Disorder (36)
Cluster Headaches (33)
Chronic Fatigue Syndrome (32)
Restless Legs Syndrome (32)
Fibromyalgia (31)
Infertility (28)
Body Image Distortion (26)
Aging (25)
Eating Disorders (24)
Interstitial Cystitis (24)
Eczema (22)
Anemia (22)
Neuropathy (20)
Hypoglycemia (19)
Asthma (18)
Adrenal Fatigue (18)
Obesity (17)
Anal Fissures (17)
High Cholesterol (16)
Obsessive-compulsive disorder (15)
PTSD (12)
Binge Eating (11)
Alopecia (10)
Nickel Allergy (9)
Insulin resistance (9)
Pelvic Congestion Syndrome (6)

.

Note: Information either on CureTogether’s website or presented in these results does not constitute medical advice. Please check with your doctor before making any decisions about your health.
Also, the 271 people with migraine who contributed the data presented here may not be representative of the general population of people with migraine. There may be a selection bias for people who are more likely to participate in online surveys. A larger study would need to be done using alternate methods of gathering information to reach the population of patients who are not online or not inclined to participate in online surveys. However, the results presented here are informative and suggest what a portion of the migraine population is experiencing.

The air is buzzing. People are talking about health more than ever before, and it’s good news for patients. Technology is making it possible for patients to take an active role in “participatory medicine”, partnering with their doctors to decide on the best course of action for their health.

Over the next few months, these 6 events will bring together patients, researchers, doctors, and health enthusiasts. Discussions, partnerships, and innovations will emerge. Keep your eye on these, and attend if you can!

.

1. TEDMED - October 27-30, http://www.tedmed.com
The medical version of the legendary TED conferences. From the TEDMED site: “The fifth in a series created by Marc Hodosh and Richard Saul Wurman, TEDMED celebrates conversations that demonstrate the intersection and connections between all things medical and healthcare related: from personal health to public health, devices to design and Hollywood to the hospital.” This year’s speakers include Dean Kamen, Craig Venter, Sanjay Gupta and Goldie Hawn.

.

2. Transform - September 13-15, http://centerforinnovation.mayo.edu/transform
A collaborative symposium at The Mayo Clinic Center for Innovation. From the Transform site: “Transform brings together a dynamic group of speakers and participants from inside and outside the health care industry to explore the intersections between human experience, health care delivery and new business models. Join us to imagine and create innovative ways to deliver a better health care experience in a 21st century world.”

.

3. Health 2.0 - October 6-7, http://www.health2con.com
Next-generation health companies and patient advocates converge. From the Health 2.0 site: “With more than a hundred speakers and hundreds of new healthcare demos and technologies on display on stage and in the exhibit hall, you’ll get a sweeping overview of the ways that information technology and the web are changing healthcare in areas from online search to health focused online communities and social networks.”

.

4. Web Strategies for Health Communication - July 19-24, http://webstrategiesforhealth.com
A new course by Dr. Lisa Gualtieri at Tufts University School of Medicine. From the Web Strategies site: “The Summer Institute on Web Strategies for Health Communication covers how to develop and implement a Web strategy to drive a health organization’s online presence, specifically the processes for selecting, using, managing, and evaluating the effectiveness of Web technologies for health communication.”

.

5. Singularity University - July-August, http://singularityu.org
Graduate studies program started by Ray Kurzweil and Peter Diamandis. From the Singularity University site: “Singularity University aims to assemble, educate and inspire a cadre of leaders who strive to understand and facilitate the development of exponentially advancing technologies and apply, focus and guide these tools to address humanity’s grand challenges.” Biotechnology and Medicine are two of the tracks they offer.

.

6. Regenstrief Conference - Sept 23-35, http://www.regenstrief.org/conferences/2009
An invitation-only unconference, but one to watch. From the Regenstrief site: “The theme for this year’s conference is Open Health Methodologies. Participants include: Clay Shirky (open source), Dr. Roni Zeiger (Google Health), and Mark Surman (Mozilla).”

.

If you aren’t able to attend, let us know what you think are the most important issues in health today and we’ll make sure to represent your ideas. Good things will come from all the buzz - the future of health care and health research is bright.

The second video in a series of two famous buddies discussing random things, in the clip below Tim and Kevin talk about music, open source clinical trials, CureTogether (about half way through), and their favorite knives. The open source health discussion is impressive, the rest is good fun. And check out Tim’s shoes!

.

Random Episode Numero 2 from Glenn McElhose on Vimeo.

- @Doctor_V: Examples of how curetogether has sped the research cycle for migraine?? If not, how would it??
- @accarmichael: @Doctor_V Research questions curetogether has opened up so far have been in comorbidities - what conditions occur with migraine?
- @Doctor_V: @accarmichael responded immediately to my question…thanks Alexandra
- @accarmichael: @Doctor_V You’re welcome! Thanks for the question

So Twitter is really an immediate, personal way of interacting with the community
of people you’re trying to reach with your message.

A great analysis of all the Health 2.0 Tweets was put together by Chris Hogg (@cwhogg).
He assembled his findings into a very cool slide presentation, below. Look for CureTogether
on slides 16 and 17.

How have you used Twitter to spread your message?
Are you inspired to give it a try?