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.
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).
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!Tweet