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Jane K. Dickinson, RN, PhD, CDCES, is a Program Director and Senior Lecturer at Teachers College, Columbia University. She serves as a Director of the Association of Diabetes Care and Education Specialists (ADCES) Board of Directors, transitioning to President-Elect in 2023.
Dickinson oversees the Teachers College, Columbia University online Master of Science in Diabetes Education and Management program, with an expanded faculty role in the Doctoral Nursing Program at Teachers College. Dickinson also serves as Associate Editor at Diabetes Spectrum. She is a researcher, public speaker, and consultant. Over the past 30 years, Dickinson’s work has focused on language and messaging in diabetes care.
Interview with Jane K. Dickinson, RN, PhD, CDCES
In this interview, Dickinson discusses her expertise in supporting people with type 1 diabetes (T1D) and working to improve patient care through the T1D Exchange Quality Improvement Collaborative (T1DX-QI).
The T1DX-QI was established in 2016 — with the support of The Leona M. and Harry B. Helmsley Charitable Trust — in an effort to refine best practices and improve daily life for people with type 1 diabetes (T1D). Growth has been tremendous, with 54 endocrine clinics from across the U.S. participating in the Collaborative.
Fueled by top leaders in diabetes care, the T1DX-QI has become an engine of innovation and inspiration. By engaging with the shared, data-driven, and systematic methods of the T1DX-QI, clinics have seen unprecedented success in their approach to diabetes management.
With members working closely together to identify gaps in care, discover and refine best practices, and share research — the process has become knowledge-sharing at its very best. While collated data gives clinics a clear sense of “where they are,” it also demonstrates “where they can be” by applying shared, evidence-based methods for improving care.
What led you to nursing and diabetes care?
“I was diagnosed with T1D in 1975,” shared Dickinson. Her intention to study nursing wasn’t initially driven towards diabetes care but rather from a place of enjoying science, teaching, research, and interacting with others.
In time, Dickinson launched into the diabetes space as a Clinical Director for a diabetes camp — where she had been a camper, counselor, and nurse — before continuing her education in pursuit of a doctoral degree.
What do you enjoy most about your work?
“I enjoy the variety and I love teaching, it’s why I’m a nurse,” explained Dickinson. “All nurses are educators, and I think teaching is one of the most important things nurses do. My career has given me the opportunity to prepare future leaders in diabetes and nursing education, and I love that.”
How does having T1D influence your work?
“I honestly see my contribution as more of a diabetes professional than as a person living with T1D. It can be hard for me to separate the two when I’m on calls or in educational settings; I tend to think more as a professional — while knowing it’s impossible to separate the two.”
That said, “having diabetes myself allows for a unique connection with others who live with it, too. I have a broad perspective, acceptance, and a fierce loyalty for everyone with diabetes,” said Dickinson, whose primary interest area is in diabetes-related language and messaging.
As co-author of the joint ADCES/ American Diabetes Association 2017 Consensus Statement on Language, Dickinson has a laser-sharp focus on the effects that words can have on individuals; she continues to uncover how “what we say and how we say it” affects relationships with others — including healthcare providers.
“I know first-hand how people write and talk about diabetes, and talk to someone with diabetes,” explained Dickinson, who is a leader in the diabetes language movement. “I see it everywhere and I don’t know that having diabetes makes it any different. Even scientists who themselves have diabetes and study diabetes, use potentially damaging language in published scientific papers. I’m left to think: ’Are we ever going to break through?’”
Dickinson reminds, “Words can ultimately affect a person’s motivation to care for diabetes and live healthfully. It’s important to use words and phrases that are person-first and focused on an individual’s strengths.”
There are two commonly used words in diabetes care that she feels most passionate about removing from everyday patient care.
“Two of the most challenging terms are ‘control’ and ‘adherence.’ Many people have replaced ‘compliance’ with ‘adherence’ — and they are no different. Control is simply a benchmark that doesn’t make sense in diabetes.”
“While I’m very passionate and fierce, I’m not angry about the language — although I am discouraged by it. Anger doesn’t get us anywhere; we really need to think about what we’re saying and be more neutral and factual,” said Dickinson.
How did you become involved in T1DX-QI?
“In 2016, I was invited to be a panel participant at an annual meeting on perspectives of people living with diabetes. Afterward, I joined an Advisory Committee for people who live with diabetes or are caregivers to someone who does. I also sit on the T1DX-QI Publications Committee for which I review papers, have been an author on a health equity paper, and most recently as senior author on a COVID paper that we’re beginning work on,” said Dickinson.
“I don’t represent a data-producing diabetes center like most others, so I feel very fortunate to be involved from a peripheral position,” said Dickinson.
Another area of interest for Dickinson is health equity within diabetes care — which knits seamlessly into her language work.
Dickinson explained, “I prefer to use the term ‘health equity’ rather than ‘health disparity,’ because we need to be thinking about, and moving towards, health equity rather than dwelling on negative things. When people get stuck in old words, they perpetuate messages and in-turn, biases and negative outcomes in diabetes.”
“If we focus on positive, empowering, strength-based messages, similar to ‘health equity,’ we can begin to move towards those outcomes,” said Dickinson.
And while technology is wonderful, in terms of health equity, Dickinson reminds, “Not everyone has access to diabetes technology, and it’s something we can’t lose sight of. As much as efforts are geared towards future diabetes technology, access solutions have to be pursued on the same bar. I’m all for it, believe in it, and support it — and we can’t jump up and down until everyone has it.”
When Dickinson isn’t behind her desk, you’ll likely find her hiking or walking outdoors, no matter the season or weather. She also enjoys music, travel, and spending time with her son, daughter, and husband.
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