February 15, 2012

Who best to say, "You will be okay."

“If I could, I would tell you although you might not believe it right now, you will be okay…” Julie Keon. She wrote that as a mom at children's hospital looking at another mother. 

Julie offers a perfect description of why am committed to the diabetes online community (DOC). Why I went to the point to get a master degree in health communication.  She explains it in that simple idea, I want to help others believe they will be okay.
I know peer to peer support is critical in many healthcare situations, particularly chronic conditions. When our first child was diagnosed with type 1 diabetes a message similar to Julie’s helped me through the first few days. Well okay it was an irreverent and funny message not too like Julie’s but the point was the same, we would will be okay, in time we would laugh again. 
Hearing that from a veteran patient is different from hearing it from anyone else. In master program classes, my fellow students and I talked academically about the credibility of the messenger. In the real world I know that credibility comes from empathy. Someone who know the shoes you have beed asked to walk in, is a source of credibility beyond any other. 
An article on Peer-to-peer healthcare by Susan Fox the Pew Research Center quotes Susan Sontag about dual citizenship in the lands of the well and sick. With a chronic condition like type 1 the passport to the kingdom of the well that Sontag speaks of is permanently revoked. With type 1, try as you might you will never, as Fox says, “get the hell out of the kingdom of the sick and back to the kingdom of the well." Except most of the time with a people with a chronic condition aren’t what people understand as actually sick. They are 'just' managing a condition.
Fox, I think wonderfully, points out that peer-to-peer healthcare does not replace health processionals. She observes, “doctors, nurses, and other health professionals continue to be the first choice for most people with health concerns, especially among people living with chronic conditions.” She however says, The picture shifts when we ask about emotional support in dealing with a health issue: fellow patients, friends, and family are the much more popular choice.” 
That is an opportunity for medical professionals to suggest health 2.0 as an asset to help their patients. Kim Liu writes in her article “Patients Week 2011: How Health 2.0 can improve patient compliance” that there peer-to peer connections, well improve patient compliance.  
Peer-to-peer online heath communities need not be seen as a threat by healthcare professionals, because, well, they are not a threat. In fact care givers recommending quality peer-to-peer sites may improve patient outcomes. 
Liu comments on a summit of diabetes educators and online opinion leaders sponsored by my friends at Roche. I was there. It wasn’t quite as pretty as Liu makes out. In fact initially it was a bit of a clash. However from that event ongoing an working relationship has evolved between the diabetes industry and social media writers. One that hopefully moves towards connecting the power of peer-to-peer communications into care programs particularly recognizing the credibility of peers to help those living with chronic conditions.  
I want to be a part of that - a collaboration that helps the newly diagnosed feel that they “will be okay.”

6 comments:

Kim said...

I'd love to see you bring this message to a You Can Do This Project video, Bennet!

Bennet said...

Hmm. let talk about how to do that. You have my twitter I trust.

tygab said...

Rah Rah BD! Looks like a good DP this week!

Tasha

Michael Hoskins said...

Great post and vision, Bennet. I agree that we need more Health 2.0 discussion and communications in the medical profession.

Tamara Gamble said...

My son was diagnosed about six and a half years ago. We were in shock and disbelief. I think we were more distressed about the fact that he had almost died and then left to fend for himself below 20 staggering down the hallway at school, when he could have treated himself in class/supplies were there but the school wouldn't let him. I remember feeling as though our lives would never be right because people were so ignorant and honestly, looking back, we were so ignorant. Then I ran across the Dunlap family on CWD. They were great, very humorous about the disease and keeping it all in check. Then came along the story of Delaney being diagnosed at Disney World and the shenanigans that went on regarding Hendrix, an insulin syringe tucked behind the ear, and a rental moving at warp speed vs. utilizing the suggested speed-limit sign. That was the day that my perception of our situation began to change. I was moved by the courage, tenacity, and normalcy/or not of this family. I was sad that Badshoe had to use two ears but I realized at that moment that everything was going to be alright. I didn't learn that from a doctor or a nurse. I learned it from a family living with the same disease that ours was. Now, Mrs. Badshoe is a nurse and I am just a few weeks away from being one. Diabetes is just along for the ride folks. There are challenges at times but it will be ok. Diabetes or not, all things are possible; at least that's what our family believes, our "D" kid included.

Bennet said...

Thanks Tamara. Glad to share the journey with you.