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Inspired To Action: Our Third Diabetes Advocate Forum

Inspired To Action: Our Third Diabetes Advocate Forum | The LOOP Blog

At the end of our 3rd Diabetes Advocate Forum, I wasn’t lying when I tweeted I was about to cry. Surely I was exhausted because it had been a long 60 hours and the end of many weeks of planning. But I mostly wanted to hang on to the feeling of a group of people coming together and finding new ways to work together to help people with diabetes. While Medtronic only played a small part of that – as it was the attendees with all of their ideas, energy and projects that came together – I am happy we were able to provide the time and space to make it happen.

As some of the attendees admitted, it can be hard for people within the Diabetes Online Community (DOC) to know what Medtronic’s goals are for hosting one of these events. One of our goals is to obtain feedback from the community – as represented by the diverse invitees – on our vision, technology services and things we are doing like social media. Did we get a lot of feedback!

  • Based on feedback we heard before and during the forum, we expressed our apologies for creating any misconceptions about the MiniMed 530G as an artificial pancreas through the use of the term “artificial pancreas device system, threshold suspend.” And while it wasn’t our intention and we were trying to follow a category created by the FDA, we need to make sure that we remove any potential for confusion. We learned ways that we can be clearer in our terminology and have taken the follow up action to not only be clearer in any future communication but to continue to test new concepts as we proceed on this journey.
  • We had very candid discussions about CGM and accuracy, and the importance of accuracy for trust in the system and ultimately an artificial pancreas. We discussed the difference in system calibration processes for driving confidence in using the product.
  • We learned that there is continued room for growth that companies like Medtronic have to partner with the diabetes community. We discussed as a group how we can work together better, which initiatives the DOC feels it’s important that we have a voice in, and how important it is that we speak to each other instead of at each other.

We devoted over half of our agenda to advocacy and to creating an environment where this group could come together and decide on a handful of projects to do together. Given changes in the healthcare system, we asked our team to conduct a “Reimbursement 101.” I believe these Tweets sum it up best, “@cerichards21 In order to get these technologies covered, we are going to HAVE to help with advocacy as patients/members of the DOC. #MedtronicDAF”, “@saraknic The best parts of this coverage discussion is they’re explaining in a way I understand and telling me what I can do about it! #MedtronicDAF” and “@MDT_Diabetes: We’re focused on partnering/empowering you to drive change for access for health tools (ie: CGM) for #pwd – Amanda Sheldon #MedtronicDAF”.

Dr Francine Kaufman spoke about global advocacy and support for programs such as Life for a Child, the differences in diabetes care in Haiti and other countries, as well as Medtronic’s work with Kazakhstan, and China. We handed a box of tissues around after reading on Twitter about being moved to tears, quite literally, and collectively took a pause for how we, each, as individuals as help.

We brought in an unusual guest speaker for the afternoon, David Lee Strasberg of the Lee Strasberg Film Institute, famous for Method Acting. While he lives with type 1 himself, is also a D-Dad, and was introduced to me after he was awarded Father of the Year by the ADA and simultaneously through my connection with Manny Hernandez of the Diabetes Hands Foundation, we asked him to not lead a session around diabetes but how to use strategies of connecting with your core to ask for help and support. The idea is to give the diabetes advocates in attendance some tools that could help support them in their advocacy. Christel from theperfectd sent chills through the room as she recognized individuals’ strengths and asked them to support her and her campaign.

And finally we closed with an hour of intense brainstorming around a single initiative that everyone could work on together. So many ideas were flying around the room we captured pages of notes but most importantly made the connections happen so that real work could begin. I myself was already emailing Dr. Kaufman over the weekend to get her support and contacts for the Spare A Rose Campaign.

It was yet again another powerful few days and I am feeling more fortunate than ever to be able to have the responsibility of working together to take the next steps for all of the tasks and open items that came out of this. You will be hearing more from us on the steps that we are taking. We want you to know that we are listening and we care what you have to say.

Throughout the event we tweeted from our official Medtronic Diabetes account, @MDT_Diabetes, and appreciated all of the feedback and questions that came in from the online community. The official hashtag was #MedtronicDAF, so if you’re interested in the conversation and the blogs that will be written, please keep an eye on Twitter.

Here are the blogs that have been written so far:

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