At least once a day a picture of someone’s blood glucose meter reading or continuous glucose meter (cgm) graph or posting of someone’s HbA1c comes across my twitter feed. All by well-meaning diabetics who are trying to share their experiences – for support, to relay information, to pat themselves on the back for the very hard work that is the life of someone with type 1. But I am asking them and all diabetics to please pause before posting your blood sugars.
The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017. Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics. For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.
Just minutes ago I went live with my new endeavor, The Research Loop. Quite simply, it’s a website where patients and caregivers who have read a research article can submit feedback to researchers. It’s an idea that I hope will elevate the patient and caregiver voice in research and transform the research process and synergistically enhance initiatives that already exist to include patients and caregivers in research.
If you want to learn all the ins and outs of The Research Loop you can head on over to the page and explore the site. In addition to the feedback forms, I’ve posted resources and educational materials to help patients and caregivers better understand research and how they can get involved. I’ve also written a white paper which you can download here: The Research Loop: Transforming the Research Process.
But I’d like to tell you here a bit more about the story behind The Research Loop.
17 years. Nearly half my life spent in therapy.
20 years. Because I should have been diagnosed 3 years earlier.
10 years. Because that’s how long I went without the right diagnosis after starting therapy.
14 years. Of the wrong medication.
Too many years lost.
I published my first post on March 24, 2011. I wrote about Patient Centered Medical Homes and I thought I would write a professional blog about health as a human right – about law and policy and human rights. I thought there would be some focus to it, but I quickly realized there couldn’t be. That’s not who I am.
For those who read my blog, I ask one thing implicitly:
See the bigger picture.
I haven’t stated that outright but as I’ve wound my way through various topics, becoming ever more personal, I hope that some might see that there is a bigger picture in all of it. That it does all connect at some level. There is an underlying theme, even if hard to see at times – one that is at its core, a reiteration that health is a human right.
It makes me laugh knowing that my most read post is The Cruelty of Restraints. And my second most read post is Don’t Eat Armadillos. Fewer topics could seem farther apart in the realm of health, health policy, health law, human rights, advocacy, etc. But they both exist on this blog.
Over the years my posts have become ever more personal and they likely will continue to. I do hope to address some of the wider issues as I started and as are peppered throughout. But I’m no longer afraid to write my reality. It’s not pretty or professional. It may not be meaningful to many. It may just be more noise on the vast internet. It may just be my tiny voice and one day I’ll look back and be mortified at the musings of my younger self. For now though I will continue to write in the hope that the words might connect with someone somewhere – however naïve that idea might be.
This blog has evolved and will continue to. I cannot set boundaries on what it is or what it should be. I hope you will accept it wherever it goes.
Diabetes Blog Week continues with the topic for Tuesday being The Cost of a Chronic Illness:
Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?
I thought I’d take a crack at Diabetes Blog Week for the first time this year. It’s a week where diabetics from around the world follow writing prompts (found here) to share their experiences living with diabetes. The title for Monday was to write about Diabetes and the Unexpected, with the following prompt
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?