I have another post that will publish later today (about two hours from now) that I wrote with Chris about our experience at Medicine X. In it we talk about the positive aspects of the virtual (live video and twitter feed) presence of the conference.
The scholarship I was awarded to attend the conference was part of the engagement track. I felt a certain responsibility to “report” on the conference content. The problem with reporting, or really with any second hand information, is the ability for that information to lose its context. And in today’s hyperspeed availability of information, things can quickly escalate out of control.
On the second morning of the conference there was a panel about wearable devices. During that panel, one of the presenters made a few controversial statements that were quickly tweeted and retweeted.
First, he made mention of the fact that he had worn an insulin pump so he knew what it was like to have diabetes. With the benefit of time, is it easy to have more perspective on this statement. How often have we had friends or family test their blood sugar or wear a dummy pump so they would know what it is like to live with diabetes? Is it somehow different when the idea comes from someone without diabetes than when we ourselves are trying to educate our loved ones?
The same participant later mentioned that he doesn’t really use focus groups. He shared that the user doesn’t really know what they want. Again, this has the potential to be a very inflammatory statement when condensed to 140 characters. However, he went on to share that it is often difficult for the user to think beyond what they already have. He used the example of a man with a horse drawn carriage. He wants the carriage to go faster so he asks for another horse, then another horse, then another horse. But at what point does someone step in and create the car? Are users always the best innovators?
The situation at Medicine X really spiraled out of control when the same presenter was back on the stage the next morning. The official twitter stream always followed the main stage, so while the diabetes advocates at the conference were in a different session, we did see a tweet that stated that the “number one reason PWDs don’t test their BG is they don’t want 2 know result.”
Ouch! That hurts. The response was swift and fierce from all those watching – including myself. I can think of thousands of reasons not to check my BG. The cost of test strips is too high. Test strips are inaccurate anyway. The lancet hurts. I’m too busy. I’m too tired. It’s a pain to carry all my devices around all the time. I’m embarrassed to test in front of my friends. My coworkers don’t know I have diabetes so I don’t want to check in front of them. The list goes on and on.
I had a coworker when I lived in Florida who would often stop by my desk to talk about diabetes. She was experiencing a variety of complications and was curious if I was having similar issues. Eventually, we discussed her diabetes management techniques. Her diabetes management plan included oral medication and lifestyle changes. One day she asked me about the type of meter that I used. It turns out that she was thinking about getting a new meter since hers had been broken and unusable for months. She told me that she didn’t check her blood sugar because the numbers were always high and she felt like there wasn’t anything she could do about it anyway. She felt completely powerless. I encouraged her to see a different doctor, one who I knew would try to help her make positive changes to her health. She was scared to go her appointment and wanted to get her numbers “in control” before she went. That never happened. You know what hurts the most about the story of my coworker? She passed away from one of the most common complications of diabetes.
Do you know what the research shows? That one of the most common reasons people have for not checking their blood glucose? They don’t want to know the result. Hat tip to Kelly Rawlings for the level-headed research linked in the previous sentences.
Chris and I talked a little more about the Medicine X “controversy” on his podcast earlier this week. He kindly edited that portion into a shorter clip that I have included below. He also shared his thoughts on the topic last night on his own site.
A few days ago the actor Tom Hanks tweeted about his new diabetes diagnosis.
Another day another tweet with some correct information but at the same time highly emotionally charged and also including some potential misinformation.
It’s easy to respond with anger. It’s even easier to be frustrated. It seems like every day provides the opportunity to educate people after they make incorrect statements about what it’s like to live with diabetes. At Medicine X, Chris was able to sit down with the participant and express the frustrations of the diabetes community, which is not always possible. In the absence of that is my first reaction anger? Frustration? Sympathy? Education?