Next in our lineup of 2015 Patient Voices Winners is a woman who's not only been living with type 1 diabetes for a total of four decades, but is also an esteemed diabetes educator making a difference in the lives of many PWDs (people with diabetes).
Our winners of course are the 10 engaged PWDs we selected this year to attend our annual DiabetesMine Innovation Summit at Stanford in November on scholarship, and raise their voices on innovation and advocacy.
As it happens, today's the start of the big annual meeting of the American Association of Diabetes Educators (AADE), and Jane is among the many thousand educators there on the scene in New Orleans (along with our own Wil Dubois, who will report next week). Make sure to watch Jane's live-tweeting at @JaneKDickinson, and follow the #AADE15 hashtag for conference activity.
And now, here's Jane...
DM) First up, tell us your diabetes story?
JD) I was diagnosed in 1975 (just celebrated 40 years last month!) after a few months of lethargy, peeing all the time and extreme thirst -- the usual drill. My parents and extended family were relieved that it was diabetes because they thought I was dying (or so I'm told).
Where do you live and what do you do, professionally?
I live in northwest Colorado and I work for Teachers College Columbia University, which is in NYC. I am the program coordinator and I teach in a solely online Master of Science program in Diabetes Education and Management. I also provide diabetes education for patients, family members, and health professionals in my local community and I'm our local insulin pump/CGM trainer.
I'm passionate about the language we use with diabetes and about the benefits of approaching diabetes with a positive attitude.
How does that language focus play into your approach to diabetes education?
I am an educator both to people with diabetes and to diabetes educators. I am passionate about helping people find their motivation to live well with diabetes by building on their strengths, not weaknesses. In my work at Teachers College I facilitate graduate courses in all aspects of diabetes and diabetes education/management. We often discuss the language that is used around diabetes and how it can help or hurt people living with diabetes. We focus on empowering people and making every interaction about the person and not the health care professional or our agenda.
How did you get started being active in the Diabetes Online Community (DOC)?
I started a blog (JaneKDickinson.com) in 2012 because I was writing a book ("People With Diabetes Can Eat Anything: It's All About Balance") and wanted to have a place to develop and share ideas. But more importantly, I was overwhelmed by the amount of commiserating that was happening online. People with diabetes were complaining (and supporting each other) about experiences they had with diabetes and other health professionals.
As both a person with diabetes and a diabetes care provider, I made it my mission to work on bridging the gap that exists between these two groups. I know from my professional experience that the vast majority of diabetes educators chose (or stayed in) this work because they care and want to make a difference. I also know that people with diabetes are the experts on their bodies and their experience; they are in charge of their health and their diabetes management. Therefore, we need to work together for successful outcomes. And part of that success is happy, well-informed, supported and empowered people.
Sometimes diabetes education and “advocacy” seem to overlap quite a
bit. Where do you see the line between them?
Programs like the Master of Science in Diabetes Education and Management at Teachers College are a step in the right direction. I also believe that diabetes professional organizations are moving toward embracing patient advocacy groups. I see more and more DOC members at diabetes conferences and being accepted in those circles!
I also know that diabetes professional organizations like AADE are working on projects that will not only grow the number of diabetes educators, but ensure that we are a group of professionals who engage people with diabetes rather than "tell them what to do."
You’ve been at this a while. What's been the most encouraging thing you've seen change in the diabetes world as far as technology and innovation?
I still think blood glucose meters have changed my life. I started checking my blood glucose at home in 1985 and the technology has improved drastically since then. I am also a huge fan of insulin pumps; however, I am not using one now due to atrophy at my injection/insertion sites.
What do you think is still missing as far as diabetes tools and technology?
When I recently read an article about a gentleman who is blind and has type 1 diabetes, I realized that we need talking pumps and CGM systems! I also think that a carb reader would be amazing for people with diabetes -- something that can tell someone exactly how many grams of carb are in a piece or portion of food.
Also, it would be great to use what we know about genes to change someone's prognosis, and I hope that research on the microbiome will provide some answers for diabetes. And of course, needle-less blood glucose monitoring is something I still fantasize about.
We’ve asked each of
our winners to talk a bit about the life hack (or hacks) you submitted as part
of the Patient Voices Contest. What about yours?
I revealed my personal secret for checking to see if I took my Lantus dose each morning and evening. I am actually pretty consistent with taking it, but lately I've had so much going on that I've noticed my memory slacking off! I may not remember taking it even if I did take it. So my trick is to take my morning dose and put the vial in a little basket on my bathroom counter. At night I take the vial out of the basket, take my dose and put it on the counter. And so on. If I can't remember whether or not I took it (I seriously sometimes wake up shortly after I go to bed in a panic -- Did I take it?) I simply go into the bathroom and see where the vial is.
What motivated you to enter the contest?
I entered for a few reasons. I have never attended, but have heard about the Summit for several years and I've been curious about what goes on there! Admittedly I'm not the biggest technology user out there, so I am interested in learning more -- broadening my horizons.
Finally, I am facing life with diabetes in new phases -- now middle to be followed by older age. I am very curious about how diabetes technology can help people with diabetes as we age. What gadgets will or can be developed to help with the challenges of living with diabetes in this new life phase?
What are you looking forward to at the Innovation Summit?
I am looking forward to learning about something I haven't focused on in my diabetes journey, and that's technology. I certainly use technology on many different levels -- personally and professionally -- but it's not my focus. While I don't see this changing completely, I am interested in knowing what's on the horizon, what is possible and discussing ideas with others who are more focused on technology than I am. Also, and just as important, I'm excited to meet people who have existed only on a computer screen for me so far!
Thanks for all you do, Jane! Wishing you well at the AADE conference this week, and of course we'll look forward to seeing you in November at the Summit.