Big welcome to Charity Sunshine Tillemann-Dick who will be joining us at e-Patient Connections in 2011. In her talk titled Singing After a Double Lung Transplant, she’ll tell her story and if we’re lucky, share a bit of song. Visit the website for more information or to register.

Charity is an American-born soprano and a recipient of a double lung transplant. She has performed across the United States, Europe, and Asia in venues as diverse as the Kennedy Center in Washington, DC; Severance Hall in Cleveland, Ohio; Il Giardino Di Boboli in Florence, Italy; the National Palace of the Arts in Budapest, Hungary; the Tel Aviv Opera House in Israel; the American Embassy in Beijing, China; the United Nations in New York City; and the National Statuary Hall in the United States Capitol. She has collaborated and performed with noted conductors and musicians including Eva Marton, Bruno Rigacci, Joela Jones, Marvin Hamlisch, Bono, Zoltan Kocis, Joan Dornemann, and former Secretary of State Dr. Condoleezza Rice.Some of her operatic roles have included Titania in A Mid Summer’s Night Dream, Gilda in Rigoletto, Violetta in La Traviata, and Ophelia in Ophelia Forever. Charity has also performed for numerous presidents, prime ministers, members of Congress, and world dignitaries.

After receiving a diagnosis of Idiopathic Pulmonary Hypertension in 2004, Charity served as the national spokesperson for the Pulmonary Hypertension Association, working to raise awareness, increase federal research funding, expand stem cell research, and promote preventative and alternative medicine. In September of 2009, Charity received a double lung transplant at the Cleveland Clinic in Ohio.

Since receiving the transplant, Charity has shared her amazing story and vocal talents at numerous conferences and events, including: TEDMED 2010 in San Diego, CA; the 6th National Learning Congress on Organ Donation, and the 2010 Empathy and Innovation Summit in Cleveland, OH. Charity has been featured on CNN with Dr. Sanjay Gupta, Glamour magazine, ABCNews.com, TED.com, The Huffington Post, The Wall Street Journal Health Blog, the Cleveland Plain Dealer, the San Francisco Chronicle, and The Sunday Times (London). Her performances have been broadcast around the world on CNN, BBC, FOX, MSNBC, PBS, C-SPAN and NPR.

Charity received a Bachelor’s degree with high honors from Regis University in Denver, CO, where she was raised with her 10 brothers and sisters. She later studied music at the Peabody Conservatory at Johns Hopkins University and the Liszt Academy of Music in Budapest. She currently resides in Washington, DC and New York City.

We’ve all seen those apps that track what you eat or how much exercise you’re getting - losing weight is a topic of interest for so many that there are lots of those to be found. But when it comes to tracking for the purpose of learning how to better manage chronic illness, does the same motivation apply?

Wellapps® GI Monitor for tracking symptoms associated with Crohn’s and Ulcerative Colitis is one app that hopes so. It’s available for free for iPhone, Android, and blackberry devices, and there’s an online version at WellApps.com. The idea is that tracking factors related to disease management will enable knowledge about the correlation between symptoms, triggers, and active and allow for behavior changes that can help.

The WellApps® website provides a great overview of how to use the app, narrated by Brett Shamosh, co-founder and CEO WellApps®. An empowered patient himself, Brett was diagnosed with ulcerative colitis at age 16 and went on to develop the app in 2009 after a flare of the disease.

The interface is easy to navigate and it’s equally easy to enter data. You can log factors, such as symptoms or pain at the time they occur, or use the set time feature to log a factor after the fact. The app also lets you enter custom data, such as foods and symptoms, and to add notes.

The data that you log can then be displayed as a simple graph in your online chart, allowing you to see the association between factors, such as a relationship between certain foods, and a higher level of pain the next day.

The app itself provides a daily “quality of life” indicator in the form of 1 to 10 rating called “My Status”. You can review a report of the data which makes up the status score, and print a version of the report from your online account. You can even email the report to your physician directly from your phone. From the website: “The data collected is compiled into easy-to-read reports for physicians, resulting in optimal patient treatment and reduced periods of active disease.”

Physicians who are WellApps® subscribers can go further - to enroll patients and monitor their data in real time. Talk about connected health! In this case, everyone is learning how to better manage the disease, with the patient squarely at the center of the process.

And it doesn’t stop there. WellApps® is driven by an even greater purpose - to improve the treatments for Crohn’s and Colitis. For this reason, while GI Monitor is free for patients, it does require agreement to register and permission to anonymously share data about symptoms. Seems like a small price to pay. With his co-founders, Edward Shin, MD and Paolo Teodorani, CTO, WellApps® is a fine model of participatory medicine at work.

Brett also reports on his own battle with the disease as well as other news and updates in health, technology, and innovation on the WellApps® blog which is listed under the heading of Latest News and Updates. For the latest on his personal story, read his recent post called “My Uninformed Life Changing Decision.”

To meet him and learn more about WellApps® join us at e-Patient Connections, September 20-21 in Philadelphia, Pa.

Don’t forget to register for e-Patient Connections 2011! You don’t want to miss a year’s worth of innovation and inspiration and applicable insights packed into 2 days, not to mention some personal stories like the one that’s told in the video below. Visit the website to learn more or to register.

Regina Holliday, patient rights arts advocate, spoke at the 2010 conference about her family’s experiences with the healthcare system during her late husband’s illness. Regina’s story has been shared widely, and she and her work have been featured on National Public Radio and in other media.

Watch the video below to see her talk and learn about the three paintings that she painted live over the 2 days of the show.

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Regina’s talk covers a lot of ground, highlights many obstacles to being empowered within the healthcare system, and shows how she’s chipping away at them one painting at a time.

e-Patient Connections 2011 - the must attend health communication and marketing event is only months away - and we’re reminiscent of last year’s event.  One of the many highlights from 2010 was hearing from Text4Baby: an interactive mobile health platform working together with the Healthy Mothers Healthy Babies Coalition, the CDC, and a host of other partners. This public-private partnership is taking a real run at lowering infant mortality rates.

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Text4Baby is founded on the idea that a broader audience can be reached by text message (90% of Americans have mobile phones) than over the internet or by other traditional means of providing information about health.  At the time that this video was recorded, over 75,000 moms were signed up for the service.

Signing up for the Text4Baby service is easy. Expectant or new moms just need to input their due date (or child’s birth date), cell phone number and zip code and they will receive 3 messages per week throughout pregnancy and for the first year of the baby’s life.

Messages are targeted to the stage of pregnancy so that they are relevant to what each mom is experiencing. And it doesn’t stop there - messages about many related health issues are included, such as about immunizations, drug and alcohol use, and mental health.

Over the course of the service (21 months from start to finish), a mom will be reached 256 times with helpful and targeted information.

Wow.