Friday, January 13, 2012

Open letter to the AADE

The AADE is the American Association of Diabetes Educators. I just sent them this letter, but would like to invite your thoughts and reactions:

Dear people,

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.

As stated,
"Community health 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 data entry."

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

1 comment:

  1. I am behind reading blogs again. This is a great letter Natalie! PWDs have a lot to offer other PWDs and I think they should be able to do it.