How JDRF and the Social Media Played a Role in the Artificial Pancreas Campaign

By: Stacia Kirby

What is the JDRF Advocacy Team?

• JDRF has built a nationwide network of Advocates who have dedicated their time to finding a cure for type 1 diabetes.

• Time Magazine called JDRF "one of the nation's most forceful disease advocacy groups."

• “The artificial pancreas represents the most revolutionary development in diabetes care since the discovery of insulin, and JDRF is working to ensure that this development is not delayed by unnecessary regulatory roadblocks.”

• The JDRF Advocacy Group used social media tools like Facebook and Twitter to reach out to the public to sign the petition to push forward the legislation for the artificial pancreas.

How Advocacy Began

• In July 2010, JDRF convened a panel of leading clinicians and researchers to make recommendations to the FDA about the key clinical questions for AP studies, which were presented at a public meeting in November.

• In early 2011, JDRF incorporated those recommendations into a guidance document that we proposed to the FDA

• The advocacy signature campaign began October 4, 2011• The goal was to reach 100,000 signatures• There were 110,000 signatures collected by 12/1

Michael Kondratick'sJDRF Director of Grassroots Advocacy

• My passion is using technology to build and mobilize advocacy networks. Strong advocacy networks, and winning issue campaigns, are developed around the personal stories of their advocates and supporters.

• I use our Advocacy Blog, email communications, social media channels, SMS, and web presence to personalize the JDRF Advocacy experience. By communicating in a way that allows us to understand our advocates' needs, we can deliver them relevant information, motivate them to share their stories, and encourage others to join our cause.

Advocacy Success • On December 1st the FDA issued their guidelines for the artificial

pancreas.• The JDRF is encouraged that the FDA issued a draft guidance which

appears to lay a foundation for accelerating the development and availability of artificial pancreas technology (AP) that will improve the lives of millions of Americans living with type 1 diabetes (T1D).

• “Their efforts, and the efforts of countless JDRF volunteers across the country, resulted in more than 250 House members and more than 60 U.S. senators sending letters to the FDA calling on the agency to produce timely AP guidance that takes into account the recommendations of leading experts. In these highly partisan times, securing such broad bipartisan support for this goal was truly remarkable.”

Juvenation.org A Social Networking Site

• To compliment and build on the success of JDRF's online presence and outreach, Juvenation was created to establish a platform and resource for the T1 diabetes community.

• The “uncontrollable” perception of social media is what primarily continues to hold the industry back as, more often than not, social networks are viewed as black holes of adverse event and off-label reporting. However, this perception is far from the truth as the companies who have successfully engaged in social media have discovered. An example of this at work can be seen in Juvenation.org, a Type 1 diabetes community created in combination by JDRF from an educational grant provided by Novo Nordisk.

How Facebook Played a Role

•The JDRF Advocacy Facebook Page has 22,023 “likes”•The JDRF Advocacy Facebook page connects facebook users with recent activities within Congress in regards to the artificial pancreas•The facebook page allowed JDRF Advocates to reach out to a wider audience and use the public as a way to help push legislation through Congress.

How Twitter played a Role

• Twitter allowed the public to re-tweet about the legislation related to the artificial pancreas.

• Twitter has enabled the JDRF Advocacy Team to be able to reach out to the public, and allowed the public to be a strong driving force behind the artificial pancreas campaign

The Future• JDRF continues to push advocates to thank the FDA for passing guidelines with

the use of social media. It also provides support and encouragement for the FDA to continue its work on the artificial pancreas.

• JDRF makes it easy: – “On Facebook you can use this text: ‘Thank you FDA for releasing the draft artificial

pancreas guidance, an important step towards life-saving technologies for millions with type 1 diabetes.’ (Be sure to like the FDA page, and then use the ‘@’ sign to tag their page.)

– Or you can use this text for Twitter: ‘Thank you @US_FDA for releasing the draft artificial pancreas guidance, an important step towards life-saving technologies for millions with type 1 diabetes.’ #AP100k.’

– Remember, we still have much work to do before artificial pancreas systems can be provided to those that need them, but in the meantime we should continue to follow the progress the FDA is making and encourage it to proceed as efficiently as possible.

– Thanks again to YOU and the FDA!”– They don’t give up!

References

• http://images.huffingtonpost.com/2011-11-09-JDRF_1in20_Ad.png

• http://advocacy.jdrf.org/index.cfm?page_id=109568• http://www.facebook.com/JDRFAdvocacy?sk=info• https://twitter.com/#!/jdrfadvocacy• http://cc.jdrf.org/blog-2011/• http://www.linkedin.com/in/mkondratick• http://www.mmm-online.com/interactive-future-

making-the-switch/article/128075/