The AADE is the American Association of Diabetes Educators. I just sent them this letter, but would like to invite your thoughts and reactions:
I joined AADE last year for the opportunity to
attend the meeting in Las Vegas. As a long-time PWD and avid reader of
literature on diabetes for both lay people and professionals, I was very
excited and learned a lot.
My friend, Ann Williams, RN, MSN,
CDE, PhD, and former chair of the Disabilities SIG and I have been
talking for years about the concept of peer mentoring, and the ways in
which experienced PWDs could contribute to the education of both the
newly diagnosed, and those struggling with additional issues such as
depression or complications. So I was very excited when I discovered
your paper on Community Health Workers.
However, when I read the
description of the Level 1 worker, it doesn't quite fit the concept I
have been thinking about, and I would like to discuss the ramifications
of expanding the concept.
workers (Level 1 providers) are non-diabetes educators uniquely
positioned to collaborate with diabetes educators and other providers to
improve the quality of diabetes education, care, and prevention in
communities. CHWs dedicated to diabetes prevention and care are likely
to have completed specialized training. They can serve as bridges
between their ethnic, cultural, or geographic communities and health
care providers, and they engage their community to prevent diabetes and
its complications through education, lifestyle change, self-management,
and social support. CHWs also play a vital role in data gathering and
This is very exciting and forward-thinking as it
stands, but I would like to suggest that there is one community, and one
group of people who have been left out. Did you know that there is a
thriving, thousands-strong Diabetes Online Community? Many, many people
come online from all over the world, and from rural as well as urban
areas to ask questions, discuss issues and thoughts, and follow research
on diabetes, and there are dozens of people writing and blogging about
life with diabetes, be it parents, Type 1's, Type 2's, caregivers,
exercise specialists, CDE's, dietitians, etc. We are a community which
is composed of people who may not have specialized or formal training in
diabetes, per se, but have other skills (for example I spent 23 years
as a high school teacher), and a LOT of experience living with diabetes
and educating ourselves about it. We are, as in your definition,
dedicated to diabetes prevention and care. Our community is neither
ethnic, cultural nor geographic, but we do exactly what you talk about
in terms of education (but NOT medical advice), lifestyle change,
self-management and social support.
We are concerned about
medical misinformation, just as medical professionals are, and we are
very interested in helping guide PWDs toward appropriate medical care,
just as you are, and I think we should be included in your definition of
the Level 1 provider. As certified Level 1 providers, we would have
some authority to distinguish our answers from the quackery that DOES
pop up on our sites from time to time.
I know there are a couple of provisos to this idea, which
actually apply to anyone who would wish to be certified at that level.
The first is that there needs to be the opportunity for testing to
determine level of knowledge. The second is the necessity to very
clearly spell out ethical boundaries, such as knowing what questions I,
as a Level 1 provider, could answer, and which need to be referred to a
medical professional. For example, a question that I feel very
comfortable answering is "Where do you put your pump when you sleep?"
whereas when a person says "I'm throwing up and can't hold anything
down" I would recommend that they immediately consult their CDE or
doctor. People OFTEN come to us before consulting a doctor, and we are
in a very good position to guide them toward getting appropriate care.
I would like to invite you to consider working with us to
strengthen and give parameters to this kind of diabetes education, which
is already occurring, but which needs your professional support. I also
think that we have much to contribute to the discussion about what
constitutes good diabetes care from OUR perspective, as PWDs and having
interacted with literally thousands of people.
I appreciate your attention.
Natalie A. Sera