Patients teach each other


July 22nd I’ve been invited, among many other esteemed diabetes bloggers, to attend a Roche social media summit. Roche, a major pharmaceutical in diabetes care, is, as they say, “looking to see how bloggers and companies can work together to provide accessible content to the diabetes community.” They are obviously seeing that more and more patients are talking to, learning from and informing other patients. 

Our benefit as bloggers is to see if we can help patients even more by providing even more information (I happen to know Roche sponsors many valuable informational seminars), and of course, it’s also a nice opportunity for us, who mostly blog alone in our homes or offices to get out (albeit the conference is in Indiana, Roche headquarters) and meet each other. 

The fact that patients are looking more and more toward other patients for information, guidance, understanding and support is occurring at lightning speed for several reasons:

1. The internet has made this possible

2. Too many general physicians and health care providers are not very knowledgeable about diabetes

3. Even endocrinologists have less and less time to spend with patients

4. A chronic illness like diabetes requires ongoing learning and support 

5. A self-managed illness like diabetes requires the patient is made exceedingly knowledgeable to care for themselves, including both the medical acumen and ability to develop emotional resilience

6. A chronic illness like diabetes requires you get the knowledge when you’re ready. A friend, who has type 2 diabetes, told me the first year of her diagnosis when free classes were available to her, her head was spinning so much she barely took in the information. Now a year later when she’s ready, it will cost her $1,500 to repeat the classes.

Last month I gave my diabetes presentation to a group in Jersey, City, NJ. I spoke to about 30 patients with about as many pharmaceutical reps also in the room sitting behind their vendor tables filled with brochures and promotional items like pens and tape measures. I know there was also at least one endocrinologist in the room, who is an exceptionally caring physician, and a few diabetes educators and dietitians, also exceptionally concerned for their patients–otherwise they wouldn’t have created this learning opportunity for the community.

At the end of my program, all the medical people congratulated and thanked me. Also, almost every pharmaceutical rep came up to me and told me what a wonderful program it was and how much more they understood what dealing with this disease is like. 

Then, as I was leaving, one young man grabbed me by the arms and said, “Please, I have to ask you a question. I only want to talk to you. You get it, you really get it! Not like my doctor!” 

I listened to his question and gave him my opinion, which I let him know was my opinion. I also offer him the sage advice that if he wasn’t happy with his doctor he should look for another. He said he had an appointment next week with, in fact, the doctor in the room that night. Then he asked another question, and then another. And when finally he was spent, his eyes were tearing with little droplets of gratitude.

We have an edge over doctors. We live it, and there is an immediate, invisible bond. It will be interesting to see what Roche is thinking, and I do commend them for thinking, and wanting to and reaching out to learn from us. It will also be interesting to see what I learn. I certainly know patients learning from patients isn’t going away and the more we can all reach out to others the better. 

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