Open letter to NPR about Diabetes Social Media piece

Dear Ms. Silverman:

Thanks for shedding light on the importance of social media for people touched by diabetes. It was certainly special to hear our friend Kerri Sparling on NPR during the drive to work this morning!

In your story, Dr. Jason Bronner from UCSD Medical Center is quoted saying: “There’s no proof in diabetes that social networking is helpful.” We strongly feel that this statement leaves out important dimensions that are essential to the well-being of people living with diabetes.

There is a wide range of studies that have shown the value of social media and mobile technologies in connection with diabetes management within specific patient groups: people with type 2 diabetes and gestational diabetes; adolescents with type 1 diabetes; patients over 60 years old; veterans with diabetes, etc. You can read about these in the scientific journals referenced below.

This initial evidence suggests that the benefits of social media to people living with chronic illness are real, even though large scale studies have not shown precisely who benefits and how much. Dr. Bronner’s study, which is only tracking web metrics (number of logins, time spent on web site, number of invitations sent) and health measures (weight, blood pressure, and HbA1c levels) within a single proprietary for-profit site, may miss the benefits of participating in authentic and vibrant communities like those built by members of the Diabetes Advocates program.

Additionally, Dr. Bronner’s study leaves out one of the most important benefits that is consistently mentioned by people with diabetes online: connecting with others. When they connect, they no longer feel alone, and they receive much needed emotional support to help them go through the ups and downs of life with this chronic condition. And some of the end result measurements of health outcomes in diabetes, such as HbA1C, fail to capture all the preliminary steps necessary to achieve the behavior changes that result in improved, quantifiable outcomes.

This statement by Pew Internet’s Susannah Fox sums up well what social media does for us:

“Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale.”

Other research shows patients turn to the internet for emotional support. Several of these studies about the psychosocial value of diabetes social media are also referenced below. We encourage you to consider these studies along with a multitude of testimonials (see the comments) from people who in one way or another credit the connections they’ve made via social media for making a difference in their lives.

All of the undersigned feel that a follow up story would be a great way to generate more conversation around the topic you’ve written about here, and we are happy to serve as sources for your next piece on the DOC.

In the interest of full disclosure, we fully trust and support Kerri Sparling. She is a fellow patient who discloses her relationships with sponsors, and doesn’t let those sponsorships influence the editorial direction of her blog. And she is not an exception.

Sincerely,

 

Bennet Dunlap – Your Diabetes May Vary
Manny Hernandez - Diabetes Hands Foundation
Mike Lawson – YouTube.com/MrMikeLawson
Kelly Close – diaTribe
Adam Brown - diaTribe
Sara – Moments of Wonderful
Katrina Huckabay – http://www.hopeforaly.weebly.com
Kelly Kunik – Diabetesaliciousness, @diabetesalish
Wendy Rose – Candy Hearts
Kim Vlasnik – Texting My Pancreas/You Can Do This Project
Martin Wood – http://www.diabeticallyspeaking.com
Leighann Calentine – D-Mom Blog
Lorraine Sisto – http://thisiscaleb.com
Aliza Chana Zaleon – http://www.alizawithdiabetes.com
Karen Graffeo – Bitter-Sweet
Kelly Booth – http://kellywpa.com/
Cara Richardson – http://countrygirldiabetic.blogspot.com
Tony Rose – Blogging Diabetes
Barb Wagstaff – http://www.diabetesadvocacy.com
Pearlsa Bintomani – A Girl’s Reflections
Asha Agar Brown – http://www.wearediabetes.org
Mike Durbin – http://www.mydiabeticheart.com
Ginger Vieira – http://www.living-in-progress.com
Bernard Farrell – http://Diaboogle.com/
Natalie A. Sera – http://theoddduckout-natalie.blogspot.com/
Stacey Divone – http://portablepancreasgirl.com
Allison Nimlos – http://www.withfaithandgrace.com
Scott Benner – www.ardensday.com
Scott Strange – http://strangelydiabetic.com
Amy Tenderich – http://DiabetesMine.com
David Edelman – http://DiabetesDaily.com
Barb Campbell – http://babscampbell.wordpress.com
Alan Eastwood - http://www.diabetessupport.co.uk
Kevin Lancaster – http://thet1life.com
Sarah and Andrew Morrow
Greg Borkman - http://www.facebook.com/ihatediabetestype1
Tamara Smith
Mila Ferrer- http://jaime-dulceguerrero.com
Beth Snow – http://www.earlyalertcanines.org
Meri Schuhmacher - http://www.ourdiabeticlife.com
Cynthia Zuber – http://www.diabeteslight.com
Diane Pridmore – http://www.blueheelsociety.org
C.C. King, Ph.D. - http://peds.ucsd.edu/pdrc/faculty/profiles/king-cc.shtml
Molly McElwee, R.N., C.D.E. – http://www.twitter.com/MollyMacT1D
Lynette Richards – http://www.DiabeticSeniors.com
Victoria Cumbow – http://www.victoriacumbow.com
Heather Gabel – http://www.unexpectedblues.org
Mike Hoskins – http://www.diabetesmine.com
Hope Warshaw, MMSc, RD, CDE, BC-ADM – http://www.hopewarshaw.com
Carey Potash - http://www.dlife.com/diabetes-blog/blog/carey-potash
Megan Quickle - http://MegansTouch.com
Maria Qadri - http://climbingdiabetes.blogspot.com
Alanna Swartz –  http://lifeont1.blogspot.ca
George Simmons – http://www.ninjabetic.com @ninjabetic
Thomas R. Moore – http://Type1Rider.org
Colleen Skinner - http://dmeanderings.wordpress.com/
Jon Brilliant - http://www.welldoc.com/
Bill Woods – http://1happydiabetic.com
Tom Karlya - http://www.diabetesdad.org
Barbara Zigah
Jaimie Hernandez - https://www.facebook.com/JaimieFB
Brad Slaight – http://www.diabetesduo.com
Steven Edelman MD - http://www.tcoyd.org
 Fatima Shahzad – http://sweetlife.blastmagazine.com @shahzadii
Kimball Dunlap, RN - http://www.facebook.com/kimball.dunlap.1
Sysy Morales- thegirlsguidetodiabetes.com
Hallie Addington - http://www.theprincessandthepump.com
Scott Strumello - http://blog.sstrumello.com @sstrumello
Melissa Lee - http://www.sweetlyvoiced.com
Sue Rericha – http://rfamhere.blogspot.com @RFamsRamblings
Stephanie DiChiara - http://robotpancreasattack.tumblr.com
Marie Smith - http://www.joybenchmarks.com
Tamara Oser- t1family.blogspot.com
Lee Ann Thill, MA, ATR-BC, LPC – http://www.leeannthill.com
Barbara Bancroft
Scott K. Johnson - http://scottsdiabetes.com
Marie Bernegger - http://www.tudiabetes.org/profile/MarieB
Hannah McDonald - http://www.dorkabetic.com
Beatriz Dominguez - http://crankypancreas.com
Ellen H. Ullman, MSW - http://kidsrpumping.com/thankyous.shtml  @curet1diabetes
David Shein
Scott Estrin - http://rollinginthed.wordpress.com
Nicolas Cuttriss, MD, MPH - http://www.ayudainc.net
Doris Dickerson - http://www.tudiabetes.org/profile/mamalookingood
Sarah Howard - www.diabetesandenvironment.org
J. Trupp - http://www.philmoresplace.com @nikon665
Kate Cornell - http://kates-sweet-success.blogspot.com
S. Ragan
Gerri Glass
Christopher Snider – http://www.tobesugarfree.com
Andrew Bell - Type One Nation member & JDRF employee
Cherise Shockley – http://www.diabetessocmed.com
Rachel Thursby
Mollie Busby - http://ridingoninsulin.org
Dr. Jennifer Dyer - http://endogoddess.blogspot.com @EndoGoddess
Ashley Ng –  bittersweetdiagnosis.wordpress.com @Ashiekitty
Beth Melzen
Diana Daniel RN
Paige Wagner – affiliate of http://www.studentswithdiabetes.com
Christina Ghosn – www.stickwithitsugar.com
Sarah Blacksher  - http://sajabla.wordpress.com
Karen Anderson Hoffman – http://www.blahblahbklyn.com/
Claire M. Blum, MS Ed, RN, CDE – http://www.partnersandpeers.org
Landileigh Nelson – http://landileigh.wordpress.com/
Jessica Collins – MeandDBlog.com
Dennis Urbaniak @Durbaniak
Tom Shearer
Ann Bartlett, CMT ~ healthcentral.com/diabetes
David Panzirer, Trustee The Leona M. and Harry B. Helmsley Charitable Trust
Khürt L. Williams - http://khurtwilliams.com
Robert Ashley - https://twitter.com/Kailasa12
Renza Scibilia - diabetogenic.wordpress.com
Jamie Naessens - http://flyingfurballs.blogspot.com @InkStain_D
Alecia - www.surfacefine.com @surfacefine
Sally Marchini - https://www.facebook.com/diabetes.and.coeliac.disease @SallyMDietitian
Jayne Lehmann RN CDE - www.edhealthaustralia.com.au @JayneEdHealth
Clare Fishman
Merle Gleeson - www.type1diabeteslounge.org

 

 

 

(if you want to have your name added, email your name and link to: info@diabetesadvocates.org)

 

References:

  • Bandura, A. “Health Promotion by Social Cognitive Means.” Health Education & Behavior 31.2 (2004): 143-64. Print.
  • Bond, G. E., R. L. Burr, F. M. Wolf, and K. Feldt. “The Effects of a Web-Based Intervention on Psychosocial Well-Being Among Adults Aged 60 and Older With Diabetes: A Randomized Trial.” The Diabetes Educator 36.3 (2010): 446-56.
  • Fox, Susannah. “Medicine 2.0: Peer-to-peer Healthcare.” www.pewinternet.org/. 18 Sept. 2011. Web. 10 Apr. 2012.
  • Gilbert, K., Dodson, S., Gill, M. & McKenzie, R. (2012) Online communities are valued by people with type 1 diabetes for peer support: How well do health professionals understand this? Diabetes Spectrum 25(3), 180-191.
  • Glasgow, Russell E., Manuel Barrera, H. Garth Mckay, and Shawn M. Boles. “Social Support, Self-Management, and Quality of Life Among Participants in an Internet-Based Diabetes Support Program: A Multi-Dimensional Investigation.” CyberPsychology & Behavior 2.4 (1999): 271-81. Print.
  • Harris, M., K. Hood, and S. Mulvaney. “Pumpers, Skypers, Surfers, & Texters: Technology to Improve the Management of Diabetes in Teenagers.” Diabetes, Obesity and Metabolism (2012). Print.
  • Hawn, C. “Take Two Aspirin And Tweet Me In The Morning: How Twitter, Facebook, And Other Social Media Are Reshaping Health Care.” Health Affairs 28.2 (2009): 361-68. Print.
  • Koh, Howard, Donald Berwick, Carolyn Clancy, Cynthia Baur, Cindy Brach, Linda Harris, and Eileen Zerhusen7. “New Federal Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The Cycle Of Costly ‘Crisis Care’.” Health Affairs31.2 (2012). Print.
  • Liang, Xiaohua, Qianqian Wang, Xueli Yang, Jie Cao, Jichun Chen, Xingbo Mo, Jianfeng Huang, Lu Wang, and Dongfeng Gu. “Effect of Mobile Phone Intervention for Diabetes on Glycaemic Control.” Diabetic Medicine 28 (2010): 455-63.
  • Liu, Kim. “Patients’ Week 2011: How Health 2.0 Can Improve Patient Compliance.” Www.eyeforpharma.com. 20 Sept. 2011. Web. 10 Apr. 2012. .
  • Mulvaney, Shelagh A., Russell L. Rothman, Chandra Y. Osborn, Cindy Lybarger, Mary S. Dietrich, and Kenneth A. Wallston. “Self-management Problem Solving for Adolescents with Type 1 Diabetes: Intervention Processes Associated with an Internet Program.” Patient Education and Counseling (2010).
  • Pérez-Ferre, N., M. Galindo, D. Fernández, V. Velasco, J. De La Cruz, P. Martín, L. Del Valle, and A. Calle-Pascual. “A Telemedicine System Based on Internet and Short Message Service as a New Approach in the Follow-up of Patients with Gestational Diabetes.” Diabetes Research and Clinical Practice 1 (2010): E15-17.
  • Piette, JD, C. Richardson, and M. Heisler. “Veterans Affairs Research on Health Information Technologies for Diabetes Self-management Support.” J Diabetes Sci Technol 2.1 (2008): 15-23.
  • Toljamo, Maisa, and Maija Hentinen. “Adherence to Self-care and Social Support.” Journal of Clinical Nursing 10.5 (2001): 618-27. Print.
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Diabetes Advocates Offer Assistance in Accurate Reporting in the Media

Did you know there are more than five different types of diabetes? If your knowledge of diabetes is defined by what you hear and see on the news or in movies then you probably don’t. Diabetes Advocates, a nonprofit program made up of influential members of the diabetes community has launched a media outreach campaign, designed to assist the media on all things diabetes.

Kelly Kunik, a member of Diabetes Advocates, stated: “Today is Diabetes Alert Day in the US and we are trying to stress to all media sources that more due diligence is required on everyone’s part when reporting on diabetes. We want to help all sources ‘get it right’ but also stress the importance of explaining the differences among ‘all things’ diabetes.”

Despite the fact that media outlets are reporting on diabetes more than ever, the condition is still widely misrepresented and portrayed as only one disease, when in actuality, diabetes is made up of several different diseases (type 1, type 1.5 LADA, and type 2 being the most predominantly confused). By emailing the organization at media AT diabetesadvocates.org, reporters can quickly fact check, get suggestions and have a real-time conversation with the Diabetes Advocates to ensure the accuracy of their articles. The Diabetes Advocates can also serve as sources for reporters.

With representation from the Screen Actors Guild (SAG), American Federation of Television and Radio Artists (AFTRA) and Actor’s Equity (AEA) within the organization, the Diabetes Advocates can also serve as information sources to entertainment outlets. Entertainment outlets looking for information on diabetes can email the group as well.

“Our goal is to stop being reactive and start being proactive,” said Kunik. “When a story with incorrect information is published, the damage is done. By making ourselves available to media and entertainment outlets, we are seeking to be part of a solution.”

ABOUT DIABETES ADVOCATES

Diabetes Advocates is a not-for-profit program run by the Diabetes Hands Foundation. The program combines the resources of its members to do activities to better educate the public about all aspects concerning diabetes.

For more details, visit: www.diabetesadvocates.org or contact Kelly Kunik.

Filed Under: Blog, Contact, Diabetes Resources, News & Analysis Tagged With: , , ,

Insulindependence

Insulindependence Group in Costa RicaPeter Nerothin of Insulindependence
Type 1 Diabetes, April 2001

“Insulindependence is a 501(c)3 nonprofit organization that inspires people with Diabetes to set personal fitness goals,  educates them on adaptive management strategies through hands-on experience,  and equips them to explore their individual capacities.”

Insulindependence

Estimated annual expenditures for Diabetes-related care are as high as $92 billion dollars in direct medical costs alone (CDC, 2008). This means that one in ten healthcare dollars spent in the U.S. can be attributed to Diabetes. With the rate of diagnosis increasing, this amount is expected to grow by more than $8 billion a year (ADA, 2008).

Insulindependence is addressing these issues and the quality of life of thousands of individuals by improving the health of the Diabetes community through its various recreation programs. Unlike any other organization of its kind, iD empowers people with Diabetes by surrounding them with peers and role models who share their condition, while teaching them the value of communication through positive and challenging experiences, and encouraging them to embrace self-management through active living.

Insulindependence changes lives by offering real-world experiences to help individuals with Diabetes overcome challenges and fears. Program participants gain enhanced self-images, fresh life-perspectives, enduring friendships, and deeper self-understandings that lead to improved self-management of their disease. Ultimately, this affords a higher quality of life to individuals and society as a whole.

Insulindependence

Filed Under: Diabetes Resources, LADA, Parents of D-Kids, Sports, Type 1 Diabetes, Type 2 Diabetes Tagged With: , , ,

Diabetes Sisters

Brandy BarnesBrandy Barnes of Diabetes Sisters
Type 1 Diabetes, 1990

“We are a 501c3 nonprofit organization whose mission is to improve the health and quality of life of women with and at risk of developing Diabetes.”

Diabetes Sisters
Brandy Barnes, MSW is the Founder/CEO of Diabetes Sisters.  She was diagnosed with Type 1 Diabetes in 1990 as a sophomore in high school.  Brandy is a graduate of UNC-Chapel Hill with a B.A. in Psychology and her Master’s degree in Social Work. Prior to DiabetesSisters, she worked as a Senior Sales Representative at sanofi-aventis.  She also served as a Clinical Trials Coordinator at UNC Diabetes Care Center and as a Marketing Manager at the American Cancer Society.  Brandy has served on the North Carolina Diabetes Advisory Council since 2002.  Her biggest support comes from her husband, Chris, and her daughter, Summer.

Diabetes Sisters is a 501c3 national nonprofit organization whose mission is to improve the health and quality of life of women with and at risk of developing Diabetes; and to advocate on their behalf. The organization offers a variety of online and in-person programs focused on the unique needs of women with Diabetes. Online, Diabetes Sisters offers programs such as a SisterMatch program, Women’s Forum, and sisterTALK blogs.  In-person, women can attend local PODS Meetups in cities throughout the US or a Weekend for Women Conference.

Diabetes Sisters

 

Filed Under: Diabetes Resources, LADA, Type 1 Diabetes, Type 2 Diabetes, Women with Diabetes Tagged With: , , , ,

1 Happy Diabetic

Bill WoodsBill Woods of 1 Happy Diabetic
Type 1 Diabetes, December 1988

“1 Happy Diabetic is video content based site that promotes creating a positive attitude with your Diabetes. ‘It’s All About Your Attitude!’”

1 Happy Diabetic

In College Bill went on to play Division II football at Bentley University in Waltham Massachusetts.  At Bentley University Bill excelled in athletics and academics.  Bill was Vice President of Bentley’s Marketing Association, Student Government Academic Affairs officer, Member of the Bentley Leadership Council, and Health Services Student Representative.  He graduated on the President’s List with a Marketing Degree in 2002.

Bill was diagnosed with Type 1 Diabetes at the age of eight, at Uconn Medical Health Center.  Bill has over 22 years of personal Type 1 Diabetes experience.  His passion for Diabetes awareness and positive encouragement for other people with Diabetes has been his personal mission.

Bill made his first video on living with Diabetes in 2007.  Since that time Bill has become the most recognized Diabetic Vlogger on the internet.  With Bill’s positive attitude and creativeness his videos have surpassed over 500,000 views.  His videos have been featured on multiple Diabetes sites including, TuDiabetes.org, Diabeticconect.com, DiabeticRockstar.com, WebMD, DiabetesDaily.com, ChildrenwithDiabetes.com, and many more.

Bill is the founder of 1HappyDiabetic.com a website that encourages people with Diabetes to live a happy and healthy diabetic life.  1HappyDiabetic.com is a social website for people with Diabetes and family members to share their Diabetes experiences and learn from each other.  1HappyDiabetic’s motto is that “it’s all about your attitude,” a place where you can find a friend with Diabetes.

Bill was awarded the 2009 TuDiabetes.org Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.

Bill Woods is a member of the Diabetes Online Community.  He has an active role in the Diabetes Hands Foundation’s Diabetes Advocate program.  The Diabetes Advocate program includes diabetes bloggers and diabetes online communities working together to conduct outreach programs.

Bill’s “Real Stories” video is featured on the Global Diabetes Handprint foundation website.  This foundation is designed to bring people touched by Diabetes together.  The Global Diabetes Handprint Foundation is sponsored by OneTouch.

Bill is the proud President of the Juvenile Diabetes Research Foundation Young Leadership Committee focusing on networking, social events, and fundraising for research to cure Diabetes.

1 Happy Diabetic

Filed Under: Diabetes Resources, Type 1 Diabetes Tagged With: , , ,

Team WILD

Mari Ruddy of Team WILDMari Ruddy of Team WILD: Women Inspiring Life with Diabetes
Mari; Type 1 Diabetes, 1981

“WILD empowers women with Diabetes through athletics & cutting edge Diabetes education. We are national, virtual and open to women of all abilities.”

Team WILD

Mari Ruddy has successfully lived with Type 1 Diabetes for thirty years. However, since her father was diagnosed with Type 1 when she was 1 year old, technically, she has lived with Diabetes her entire life. Mari was diagnosed with Diabetes when she was sixteen. Her brother was diagnosed with Type 1 when he was twenty. When she was thirty nine, she found out she had breast cancer, for the first time. She then founded the Red Rider Recognition Program for cyclists with Diabetes now used at over eighty Tour de Cure events put on by the American Diabetes Association. When she realized most of the cyclists were men, she founded Team WILD: Women Inspiring Life with Diabetes, a fitness and wellness organization for women who want to take charge of their health. Mari has been a high school principal, a high school Spanish and Leadership teacher, a strategy consultant for small education and family wellness non-profits and is currently coaching education leaders at colleges, high schools and non-profits throughout the United States. She plans to do her first Ironman event in 2012.

Filed Under: Diabetes Resources, LADA, Sports, Type 1 Diabetes, Type 2 Diabetes, Women with Diabetes Tagged With: , , ,

Diabetes Daily

Elizabeth Edelman of Diabetes DailyDavid and Elizabeth Edelman of Diabetes Daily
Elizabeth; Type 1 Diabetes, February 2005

“Diabetes Daily is an online support network and educational platform that helps people with Diabetes live a better life.”

Diabetes Daily

Diabetes Daily is an online support network and educational platform that helps people with Diabetes live a better life. Diabetes Daily features one of the largest Diabetes forums, as well as original recipes, meal plans, cookbooks, blogs, educational programs, online blood glucose tracking, health challenges and Diabetes related news.

Diabetes Daily

Filed Under: Diabetes Resources, LADA, News & Analysis, Parents of D-Kids, Type 1 Diabetes, Type 2 Diabetes, Women with Diabetes Tagged With: ,

Diabetes Hands Foundation

Manny and Andreina of Diabetes Hands FoundationManny and Andreina of Diabetes Hands Foundation
Manny; Type 1 Diabetes, October 2002

“Connecting people touched by Diabetes, offering support and information and raising awareness through programs like Big Blue Test and No-Sugar Added Poetry.”

Diabetes Hands Foundation

The Diabetes Hands Foundation (DHF) is a 501(c)(3) nonprofit organization that connects people touched by Diabetes and raises Diabetes awareness. Through its online communities (TuDiabetes.org in English, EsTuDiabetes.org in Spanish) and its other social media channels, DHF offers support and information to more than two hundred thousand people every month. Since 2008, DHF has developed pioneering Diabetes awareness programs such as Word In Your Hand™, Drawing Diabetes, No-Sugar Added Poetry, Making Sense of Diabetes and The Big Blue Test.

Diabetes Hands Foundation

Filed Under: Diabetes Resources, Español, LADA, News & Analysis, Parents of D-Kids, Type 1 Diabetes, Type 2 Diabetes, Women with Diabetes Tagged With: , ,