Trust & Technology in 21st Century Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

 

Who’s advice about the pros and cons of pumping would you trust more? Your GP’s or diabetes on-line community (DOC)?

What about how much to bolus for 2 slices of pizza and a couple of glasses of Chianti or

the benefits of pre-bolusing or using a square-wave bolus?

We still have what seems like a majority of health care professionals in a lather about “patients” using social media and taking medical advice from Dr Google when social media is transforming all our other transactions and relationships.  In an age where people accept lifts from strangers (via uber) without a second thought and jump into random strangers’ beds(via airbnb) this fear around the internet seems as quaint as quill pens and glass syringes.

For me, I’d trust the DOC any old day of the week over a GP. I mean my GP (who is lovely and very good and caring with non-d stuff) still can’t understand that my pump isn’t an artificial pancreas and that a localised shot of cortisone will give me massive insulin resistance. That’s OK, unless your GP has diabetes then they’re unlikely to understand its intricacies and to keep up with every new fangled thing 🙂 I trust my GP with certain things just as I trust my Ophthalmologist, Endo and the DOC with others. Sometimes I dip in and out of the expertise of all of them to make an informed decision.

Seriously, it’s time for healthcare to catch up with life as it is, not how many doctors would like it to be. The world has changed, institutions and experts are no longer the gatekeepers, trust in institutions continues to decline rapidly. This can be lamented but it won’t change the fact that not only have the gates been opened but the entire fence has been destroyed. Instead of complaining about patients bringing you pages of information printed out from a Google search or thinking that you have to protect patients by curating a list of “approved sites” health care professionals need to think about how they treat and interact with 21st century  patients.

Rachel Botsman, Slide from Trust Me I'm a Stranger presentation, at Wired for Wonder, Sydney
Rachel Botsman, Slide from Trust Me I’m a Stranger presentation, at Wired for Wonder, Sydney

It is no longer a new or challenging thing that people with type 1 diabetes share information and support online. That is a firmly established fact and has been for years-get over it gatekeepers. When I surveyed users of the Reality Check Forum back in 2004 as part of my Masters research, of the 400+ respondents, 98% of them had made medical decisions on the basis of information obtained from the forum. Since then many more people have joined the web and platforms like twitter and Facebook have facilitated easy, cost-free collaboration between people with diabetes around the world. Every day, 1000s of people with diabetes are evaluating health information and making decisions about what to trust and who to listen to. You can’t assume that they’re going to listen to their doctors exclusively and neither should they, given the life-threatening experiences many T1s have had with medical “experts”.

What is new and challenging is the technology does change and the way we use it does too. We are no longer just talking on social media but people are joining together to improve physical care and develop new ways of “doing diabetes”.  It’s referred to as the collaborative economy and is epitomised in businesses like Uber and Airbnb. There’s no reason it shouldn’t apply to diabetes. Bring it on, I say.  The Nightscout project is the most exciting and innovative example of this that I’ve seen lately.

“Nightscout (CGM in the Cloud) is an open source, DIY project that allows real time access to a Dexcom G4 CGM from web browsers via smartphones, computers, tablets, and the Pebble smartwatch. The goal of the project is to allow remote monitoring of the T1D’s glucose level using existing monitoring devices.”
See http://www.nightscout.info for more info.

Originally conceived and developed by Dana Lewis (who has type 1) and her now husband tech-guru Scott Leibrand who was a twitter engineer the “we are not waiting” motto sums Nightscout up. We want better ways of “doing diabetes” and we’re going to work together to make it happen now. We trust each other to do this collaboratively.  I trust these guys, I see their approach, I see them and users of the device/s on social media and I’m like “yep, they get it”. Nightscout is all open source programming and it relies on volunteers the only cost is for the components to “build” the monitor. A far cry from the usual model of bringing a medical device “to market” and requiring subsidisation from insurance companies or government.

It’s interesting that I’ve seen articles about Nightscout on social media and in business magazines like the Wall St Journal and Business Insider but not diabetes institutions (I might be wrong here, if you know of a diabetes organisation that’s reported on Nightscout, I’d love to hear about it in the comments).

Emma Lo Russo, Why Being Social is more than Being Social at Wired for Wonder, Sydney 27 August. So applicable to diabetes tech, and how much better can we do with collaboration rather than competition?
Emma Lo Russo, Why Being Social is more than Being Social at Wired for Wonder, Sydney 27 August. So applicable to diabetes tech, and how much better can we do with collaboration rather than competition?

I see the future breakthroughs in diabetes in projects like Nightscout and in collaborations between tech, pharma/medical device industry and the diabetes community.

Where do you see the future of diabetes? What do you think needs to happen to bring diabetes and healthcare into the 21st century or should we be treading more carefully to make sure quality control remains rigorous?

One final note on trust ‘cos I really have to say it. When I see a plethora of social media accounts spring into life touting the advantages of some new diabetes product that is too good to be true and costs an arm and a leg, I know that those accounts don’t “get” diabetes and whatever they’re selling is likely to be as irrelevant as well. It irritates me that they are trying to manipulate a community that I value so much, astroturfing spammers, we recognise you, so stop it!

9 thoughts on “Trust & Technology in 21st Century Diabetes

  1. True Gina and Melinda. Not really touched on here but the benefits for me of the on-line community is the validation that my reality is OK and shared by others. For example, a recent post asked if 2 hypos a week was normal. The answers were overwhelmingly yes, and more. I think back to my last visit to my heart specialist who was jumping up and down aghast when I said I had one a week (I was being conservative). My experience with the on-line community is to gain confidence to argue/debate with medicos instead of accepting everything without question. They probably think I am a pain in the proverbial but I feel empowered.

    1. So true Sweetie, I don’t talk about it explicitly in this piece but it’s that empowerment that came from knowing everybody else struggled with their blood sugars and weren’t coming up with 5.5s all the time that really changed my whole attitude to diabetes, I felt like such a failure. It was so liberating to see and hear of others real experiences instead of just seeing diabetes through the lens of the health practitioner. Oh and I am sure every medico thinks I’m a total pain in the proverbial.

  2. I asked my endo last time whether she knew what PWDs were doing online. Her response was “I can imagine.” Goes to show how out of touch they are. I really do wish the DOC and peer support was supported more by diabetes clinics and doctors (in my experience it’s not). I’ve had my best year diabetes wise, and I credit that to the DOC and taking an interest in diabetes. Doctors just don’t “get” it the way that we do amongst each other.

    1. There are a few doctors out there who support online communities. I particularly think that diabetes education needs to catch on to the fact that “education” is about socially constructing knowledge not about simple transfer of knowledge from the expert downwards. With the exception of DAFNE (which I haven’t done but the model makes sense to me) D education is stuck in a 19th century mode.

  3. I now decline to engage with DE’s or CDE’s and gain all my knowledge and information from researching various data bases and through DOC. When you look at some of the position statements for DA, ADEA it is very disconcerting that their policies are often in line with the Health Dept, even when this is blatantly NOT in the best interest of the diabetes community.

Leave a Reply