OrganizedWisdom Health Blog

Diabetes Feature: 10 Type 1 Diabetes Patient Experts

OrganizedWisdom's Diabetes Feature this week is on diabetes patient experts who share their experiences and expertise with others in the hope of helping others through their journeys with diabetes. Along the way, many share great insights, nutrition tips, and inspirations that are helpful to anyone. Read on to be encouraged by ten patient experts with type 1 diabetes who don't let this disease define who they are, but do face the daily challenges of managing this disease and share their discoveries and realities along the way. 

1. @ninjabetic George Simmons, aka the Ninjabetic, is a type 1 diabetic who blogs about life with diabetes, music, fatherhood, and more. Why Ninjabetic? As he says, “it takes being a ninja to live successfully with diabetes.” Check out his helpful blog. You’ll find that George is a proponent of Camp Carb, uses orange glucose tabs for lows, and is planning to get his exercise routine going again after his Cinderella musical performance. Break a leg George!
   
   
2. @blogdiabetes Tony Rose started Blogging Diabetes to help others learn more about living with diabetes from an online community and resources he shares. He was diagnosed with type 1 diabetes 12 years ago. He has teamed up with Quality Health and shares his blog posts with their readers. He is also the author of DSA Insights, a blog dedicated to business analytics and data visualization topics.
   
   
3. @BernardF Know where to turn for quality new diabetes technology reviews? Well, Bernard Farrell’s Diabetes Technology Blog is just the place. Read reviews on glucose monitors, blood sugar meters, diabetes software, the new insulin patch-pen, and more. Bernard also mixes things up with posts on living with diabetes. As an example, see his interview with Kris Freeman, the reigning US National cross-country champion. Bernard educates while living in the hope that “every day brings the possibility of a cure.”
   
   
4. @sstrumello Scott Strumello authors Scott’s Web Log while he consults, speaks, writes, and lives with type 1 diabetes. He urges people to keep the hype of “junk science” in the media from interfering with real hope and science. His blog is insightful and informative. Gotta love the profound Wil “Printcrafter” diabetes quote posted on his blog. Curious? Go check it out!
   
   
5. @leeannthill Lee Ann Thill is a registered board-certified art therapist who combines an artistic approach with her writing on diabetes. The Butter Compartment blog is filled with great diabetes insights, photos, and illustrations. As an artist, she has a creative approach to her health writing and mental health advocacy. Her new Friday Food File gets two thumbs up!
   
   
6. @MatthewTendler Type 1 diabetic and mHealth innovator, Matthew Tendler, authors the iPhone Health Technology blog to share innovations and reviews in the mobile diabetes arena. As co-founder of MYLEstone Health, he is responsible for Glucose Buddy, the free diabetes and blood sugar application for the iPhone and iPod Touch. He turns technical information into informative, helpful, and interesting blog posts. He has dedicated his career to “making a true difference in the lives of people with diabetes.”
   
   
7. @amblass Allison Blass started Lemonade Life to chronicle her “life as a twentysomething living with diabetes.” I’m partial to her “My Patchwork Quilt” blog post. Allison has quite the background in giving of her time and talents to further support those with diabetes, especially teens. As a d-teen advocate, she founded dLife’s Diabetes Teen Talk, coordinated the Diabetes Online Community, and hosted Teen Talk on Diabetes Station. She’s a JDRF’s Online Diabetes Support Team member and has written for various Diabetes publications. Hats off to this fantastic diabetes advocate and patient expert!
   
   
8. @Dorkabetic Hannah loves to write and share her “dorky life with diabetes.” She writes with a playfulness, vulnerability, and honestly. She never professes to be an ideal diabetes patient, but she shares her struggles in a way in which many will identify. Her Dorkabetic blog is filled with musings of glucose levels, insulin pumps, movies, writing desires, Paper Spaceships submissions, and any “nerdy thing” of interest.
   
   
9. @diabetiville Mark Clifford blogs on grassroots efforts to promote diabetes awareness and support for those affected by the disease. He founded Global Diabetic Awareness communities. See his Diabetiville blog and video channel. You might just be inspired to start a Diabetiville Bicycle Club or other grassroots effort in your area. 
   
   
10. @iam_spartacus Christopher Snider doesn’t let his diabetes define him. In his A Consequence of Hypoglycemia blog, he not only speaks as a type 1 diabetic, but also as a self-professed gaming addict, network engineer, and Hokie (Virginia Tech) alum. Christopher is an avid podcaster and has his diagnosis story, referred to as Origin Story, on his blog. Check it out.

Check back for the next Diabetes Feature on 10 more inspiring diabetes patient experts. 

If you know of someone who is worthy of our Patient Expert Award, please tweet your recommendation to @organizedwisdom in this format: "I recommend @[username] as a patient expert for @OrganizedWisdom or use our contact form. 

Other featured patient expert blog entries:

Follow Friday: Eclectic and Effective Group of Patient Expert
Follow Friday: Featuring 5 Patient Experts

by Julie Bohlen, MBA-HCM, ELS

Follow Friday: Featuring 5 Impressive Health Expert Profiles of the Week

As we have heard from the highly publicized Chirp conference, Twitter can now boast an impressive 180 million visits a month and 106 million registered users. To cap off these staggering statistics, Twitter is adding 300,000 new users daily.

In the context of health and medicine, this translates into an incredible amount of health information being discussed and recommended among doctors, health professionals, and patient experts continuously.  

OrganizedWisdom recommends these impressive and interesting health experts’ Twitter profiles for this #FollowFriday.

1. @johnlapuma Would you ever believe that you could find an internal medicine physician, a medical ethics expert, and a professionally trained chef rolled into one person? Well, if you haven’t heard of ChefMd, let us introduce you to Dr.John La Puma. This New York Times best-selling author pioneered the idea of delicious food-as-medicine, included in weight loss, cholesterol-lowering, and anti-aging eating plans. Join him for his “What’s Cooking With ChefMD?” or his co-hosted “Health Corner” TV programs on Lifetime.
   
   
2. @wheezemd With record high pollen counts, you are sure to find helpful resources shared by allergist Michael Blaiss, MD. He frequently shares quality health links and expertise in the areas of allergies, asthma, and lung conditions. Dr. Blaiss is past President of the American College of Allergy, Asthma, and Immunology and practices in Memphis at the Allergy and Asthma Care Center. 
   
   
3. @MCW_Bioethics  The Center for the Study of Bioethics, Medical College of Wisconsin is committed to guiding health professionals, policy leaders, and community members in the exploration of challenging medical ethics that impact research and our healthcare delivery system. The center frequently shares helpful resources on some of the most challenging issues in bioethics.
   
   
4. @drmintz Matthew Mintz, MD is an internal medicine physician who gives his helpful perspective on recent medical news. He’s an Associate Professor of Medicine at The George Washington University School of Medicine. Visit Dr. Mintz's blog.
   
   
5. @TrishaTorrey Patient exert, Trisha Torrey, is a newspaper columnist, an About.com expert in patient empowerment issues, and an author of You Bet Your Life! The 10 Mistakes Every Patient Makes.  In 2009, she launched AdvoConnection, a directory to help patients find patient advocates, coaches, and health navigators. 
   
   

By: Julie Bohlen, MBA, ELS
     

Got Great Health Links? Nominate Them on OrganizedWisdom!

A few months ago, I wrote about OrganizedWisdom's ongoing mission to curate great health information. We know that this process doesn't begin and end with our team, and now we have better tools to get outside input.

We cordially invite all of the health experts out there - from doctors and nurses, to students and researchers, to patients and caregivers, to bloggers and librarians - to contribute to our mission by reviewing the "top 10 resources" lists within our WisdomCards and nominating health resources to round out the list of web pages we recommend.

You'll notice that many of our top 10 lists don't always have 10 individual links listed. That's by design. If we haven't uncovered 10 high quality, unique health links during the WisdomCard creation process, we'll intentionally leave room for nominations.

OrganizedWisdom's own team of experts reviews each and every nomination, and if the link is approved it will join our top 10.

Every day we get dozens, sometimes hundreds, of amazing link suggestions. The team at the University of Maryland Medical Center website recently visited OrganizedWisdom and nominated a number of links. Here is an example of one of many instances where their high quality health information made an excellent addition to a WisdomCard: http://organizedwisdom.com/Chronic_Shoulder_Pain (see their helpful video podcast at #9 on the top 10 resources list).

Here's how to nominate your own favorite resource:

1. Search OrganizedWisdom to find a WisdomCard that is the best fit for the subject of your link.
2. Go to that WisdomCard, review the top 10 resources list. If your favorite resource isn't already mentioned, nominate your link. (See sample form at right.)
3. Fill out the form; hit submit. We'll let you know if it's been approved. It's that easy!

Why don't you visit OrganizedWisdom and nominate your favorite health links today?

We're curating the best health information for you!

At OrganizedWisdom, we've always called the men and women who hand-craft our WisdomCards "Guides" but perhaps we should start calling them "Curators."

Let me explain.

Just like the art aficionados who painstakingly select the masterpieces that will adorn a museum's walls, our Guides carefully assemble WisdomCards full of resources to address the very health topics you're searching for.

And it just so happens that the concept of curation is seen as the next big thing in media. Steve Rosenbaum's recent piece in the Silicon Alley Insider explains that there is a new role for media companies that's all about: "giving folks who don't want to spend their lives looking for an editorial needle in a haystack a high-quality collection of content that is contextual and coherent."

Well, as someone on the inside of a company that's actually been doing this for a few years, it's exciting to see that it's catching on! And as the daughter of someone with a chronic illness, I've never been more convinced that it's absolutely essential, especially in the area of health.

My mother has multiple sclerosis. And every time I try to look something up for her, even as a professional health editor with years of research experience under my belt, I am simply overwhelmed by the amount of, well, junk that I find.

On the other hand, here's an example of one of our WisdomCards on depression and multiple sclerosis.

It has a helpful summary, a few interesting facts, and an assortment of links to quality outside resources, thoughtfully picked by our Guide, and medically reviewed by a physician.

OrganizedWisdom has now curated more than 50,000 health topics just like this. Why don't you let us find those needles in the haystack for you?

Have you had these questions? Now, we've got answers!

 Have you ever wondered:

• How will bipolar disorder affect my relationship?
• Is gaining weight part of bipolar disorder?
• Why do I have trouble sleeping?

If you're one of the 5.7 adult Americans with bipolar disorder, these are likely the same questions you asked when you were first diagnosed. And how do we know that? They're some of the questions we see coming up in the search queries we look at every day, and we thought it was time they got answered!

You see, OrganizedWisdom is taking our focus -- helping people find the health information they're seeking -- to the next level. Our new Frequently Asked Questions section (see our first installment, Bipolar 101) invites doctors and other qualified medical professionals to help answer these hot questions while directing users to WisdomCards loaded with helpful resources.

We invite you to flip through these new FAQs, tell a mental health professional you know to submit a response, and share with friends or family members who live with this condition.
 
And don't forget to tell us what you think. Please share your feedback here!

Health 2.0 Conference Interview of CEO Steven Krein

How Health 2.0 May Push the Government Forward

One of my favorite NPR programs Talk of the Nation, featured Don Tapscott today in a discussion called Government 2.0 - Building An Online Democracy.

Mr. Tapscott, author of Wikinomics and Paradigm Shift, mentioned health care, and several Health 2.0 companies including OrgnanizedWisdom, Sermo and DailyStrength, as examples of companies who are helping shape the future of healthcare and ultimately serve as powerful examples the government should follow.

It's an interesting conversation worth a listen if you have a few minutes...Listen to the program here.

The Wisdom of Patients

Respected health economist Jane Sarasohn-Kahn and the California Health Foundation have published an inspiring new report with a title I love: The Wisdom of Patients. Sarasohn-Kahn investigates the ways social media are empowering patients and providers to collaborate in new ways -- a collaboration we often call "Health 2.0." Among her findings:

• People in search of health answers are often willing to trade off aspects of their privacy if a site makes clear how their information will be used.
• Online social networks can be sources of misinformation, but good online communities are self-correcting.
• Consumers are smart enough not to rely on a single source of information on health topics.
• Emotional support is nice, but online health audiences want information first.
• Consumers will pay for online health content they perceive as trustworthy and valuable to them personally.
• As a business, Health 2.0 is still emerging, with a number of different models in use.
• Health 2.0 is a disruptive force, changing the interactions among patients, physicians, pharmaceutical companies, hospitals and other actors on the healthcare stage.

The report also includes profiles of Health 2.0 players like diabetes blogger Amy Tenderich and Matthew Zachary of I'm Too Young For This!. Well worth reading -- download it here.

Personalized Health Information Based on Your Genome

Navigenics Health Compass is launching this week in NYC at a series of events and panel discussions called DNANYC.  OrganizedWisdom Health is thrilled to participate on the panel Personalized Genomic Health: New Paradigms, New Industry this Thursday evening.  Steven Krein will join John Doerr, David Agus, MD, and Dean Ornish MD  to focus on the impact these new services will have health care services and health information.

As more people use services like Navigenics Health Compass or 23andMe.com, they will need personalized information and education to help them better understand their genomic report. One reason the service from Navigenics is so interesting is because it provides 24/7 access to a team of Genetic Counselors to help explain what your genetic analysis means and support you in knowing how to take next steps. OrganizedWisdom is supporting this concept by developing WisdomCards on each of the relevant SNP Codes and health conditions currently mapped by the reports. Get your genome mapped, and use OrganizedWisdom's WisdomCards to research more about each of the specific conditions in your report.

Personalized health information tailored for an individual is here.  Just like people want specific information tailored to their location and interests, they will be able to get education and WisdomCards that map to their human genome. 

Pretty amazing where this is all going.  And it's only just the beginning.   

EconHealth Video: Emerging Models in Health 2.0

OrganizedWisdom's Steven Krein participated on the EconHealth Panel last month moderated by Michael Mason, Health Editor, NYTimes.com.

You can watch the video below of the discussion Steve participated in, as well as get access to all of the videos from the seminar including Steve Case's key note check here.

Panelists included: Raj Amin, CEO and co-founder, HealthiNation; Steven H. Krein, CEO and co-founder, OrganizedWisdom; Daniel Palestrant, CEO, Sermo; Dean Stephens, president & COO, Healthline.