Thursday, September 5, 2013

How Not To Engage With Patients On A Google Health Chat Re: Diabetes

So things have been quiet on this end because of the holiday, and also having a minor local anesthetic procedure (not diabetes related, all is well, I'm cool,) on Tuesday morning, not to mention a short work week and trying to get everything done today and tomorrow.

 So when I received an invite for a Diabetes Google Hangouts  Health Chat that had a less than flattering diabetes description, I thought even though I was short on time and the diabetes wording was..... lacking, it might be a great way to have voices in the DOC  heard and to ducate others - and learn a few things myself. 

And yep, I did learn a lot. I learned that some companies who promote Rxhealth online, don’t know jack about patient engagement. 
And I’m angry for those who attended the diabetes google health hangout chat in search of information and support, who thought they’d have the opportunity to have their voices heard and who were told they’d have the opportunity, and then were denied it. 

So here’s a primer for others out there on how not to engage with patients on A Google Health Chat.

If you decide to troll the twitter and or Google looking for people with diabetes that you want to send last minute invites to (and according to the non response invites & the d chatter online, there were a lot,) know what said peoples relationship to diabetes is and why diabetes is so worry about diabetes. 

And please, whatever you do, DO NOT describe diabetes as a“relatively preventable disease” in both your invite and in your chat! 
The whole chat mantra of "educate, prevent and prevail" has a nice vibe to it for sure, but  the whole "prevent" part is misleading when it comes to diabetes in all its many dimensions.

And re: the Subject line of your email invite that read: Media Opportunity , and asking said invitee to be a “participant,”  is incredibly misleading if it is not a media op and all the invitees are not actually allowed to participate in any form, be it written or verbal. That's not only deceptive, it's wrong.

Here's the thing: The definition of participant  - At least according to Webster's is: one who participates. And related words include; helper, colleague, sharer, partner. 

There was no participation by those invited to attend the chat - none at all.  Instead, the panel completely ignored all of the participants in the chatroom who were typing their comments, questions and concerns because they weren't allowed to you know.. actually speak. 

And please, whatever you do, don’t blame the lack of engagement on the Google chat app and not being able to see the flurry of participants comments. 

Boyfriend, it was more than the chat app acting up. 

You needed to have someone from your company monitor the chatroom to field participants questions and concerns
 Here’s a thought: Have a coworker log in from their computer and text the panel moderator the questions being brought up, or if you’re the moderator and see that the chatroom seems quiet, why not look at the screen and ask: Does anyone have any questions? 

Wait a second, you did have people on your end in the chatroom, so why didn’t they give the the moderator a heads-up regarding the  questions? Damn Google Chat app!

Also:  HAVE an Endocrinologist on your panel, someone who specializes in diabetes and the entire endocrine system - And  who knows that not only children and the occasional 20 something are diagnosed as type 1s . 
Someone who not only knows, but is aware that LADA Type 1.5 is real and actually exists. Not a GP who suggests having a smaller slice of cake at the birthday party instead of the larger one and never once mentions going to see a Certified Diabetes Educator.

Have a Pharmacist who doesn’t use the example of a patient with t2 who times their blood sugars based on their TV show schedules. 

NEWSFLASH: Diabetes stereotypes are wrong and that example just perpetuates that people with type 2 are fat, lazy and watch TV, 24X7.

Was at least some of the info good and or helpful? Yes, of course, but the good/ helpful  info was clouded by the fact that people invited to the chat  weren't being heard, that people with diabetes were being told to make healthy choices and be healthy. REALLY?
It was frustrating that no mention of diabetes support, the Diabetes Online Community, Peer Support, or the importance of seeing an Endocrinologist and a  Certified Diabetes Educator to learn how to live with diabetes and make wise choices.   But not surprisingly, Google Ventures & Rani Therapeutics and oral insulin were mentioned, as were Mannkind & inhaled insulin. 

Keeping good healthy habits was a continual catch phrase, but people need to be taught what healthy habits are and how to go about making them and keeping them - Not to mention the whole mental side of diabetes and the stress it brings - including keeping healthy diabetes habits.  

You want to engage with people living with diabetes?  Then do just that - Talk with the people you invited instead of at them .

You didn’t have a Google chat, you didn’t even have a Google lecture, because at the end of a lecture people get to ask questions. 

You had such beautiful opportunity to talk with people living the diabetes life - To learn what their fears and concerns were  - You had the chance to educate  and teach - and be educated. And you had the chance to have a real dialogue. 

Instead, you did none of the above.There was no dialogue with the people invited, no conversation, no questions from the audience answered - There was nothing participatory about it. 

95% of diabetes care is in the patient living with diabetes and their family's hands - Participation in all dimensions of diabetes  - including Health Chats is paramount. 

For the record, I emailed back and forth with 2 reps from the company sponsoring the chat ( I hesitate saying who the website is because I don't want to give them any play online, still -you can read between the lines and you might figure it out,) before and after.  First I was told  by one of the contacts I never got back to them re: the panel, but  when I showed the person our string of emails to one another, I was told the original email was unclear. OK.  Finally both contacts basically blamed technical difficulties and poorly worded emails , apologized and said that they learned a lot about the entire process. Yeah, Ok. 


Kellys Blogs said...

Glad you are ok. Psh psh to the chat. :/

Bob P. said...

Lots of companies have mistaken various kinds of social media as new ways to conduct traditional unidirectional marketing. Sometimes this has been ignorance, sometimes it's been bad faith. It's always hard to tell. I'd be inclined to suspect bad faith in this case, but their degree of ignorance of diabetes dwarfs their SM ignorance.

I don't understand why people wanting to talk (however inaccurately) about T2 don't just say so. It'd be so easy.

Scully said...

You're our spokesperson!
so smart and so strong.

Unknown said...

You go girl! Just reading this got me fired up!!!

Anonymous said...

Again...I HATE the confusion and the fact that t1 and t2 are lumped together. We get it as adults that people are just uneducated/uninformed about t1. It's really hard to explain this to a child with t1...that even media and companies who SHOULD KNOW are putting false information out there and presenting it as TRUTH. The other night I got the "oh, yeah, she (this woman's daughter who is in my daughter's grade at school)knows all about diabetes; her grandmother just had her leg amputated last Christmas." THANK GOD my daughter had turned away from the conversation to play with her daughter. Not that we haven't discussed the differences and the confusion between t1 and t2...we have...but it still would be a shock and disheartening to a young child (and maybe her mom) to hear that thrown out there like, yeah, that could happen to you, too. And then these companies who SHOULD KNOW don't even do the research so they'll know what they are talking about...and they won't let people (who are living with it, who DO KNOW and HAVE done all the research so that they can live WELL with it)have a voice in discussion. Crazy. Frustrating.

Paul said...

Kelly, something crossed my mind while reading about the "chat." Perhaps there was no responses to questions posed, was that this whole presentation was pre-recorded, which could explain why no questions were allowed. The recording can't answer questions. Just my two cents worth.

k2 said...

Paul -
I get where you're coming from - but the chat was live and was being recorded as it transpired.