Open letter to NPR about Diabetes Social Media piece

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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.