All -

Over the past couple of years I've been thrilled to see the growth of this dynamic, global DOC - Diabetes Online Community. In a Nutri-Zine I've shared some ways that you can engage your clients - suggestions straight from a few DOC leaders.

In the meantime I thought I'd start this eTalk so we can all get a feel for what you see happening on the DOC with your clients or with you directly. Do you see PWD engaging? If so, where and how? What benefits are they reaping? Are you engaging? Why/why not? Do you have any concerns?

Please chime in. Let's get this conversation going. It's an important one! 

Hope Warshaw, MMSc, RD, CDE
Nutrition Section Editor, PRESENTdiabetes.com

Thanks for starting this, Hope.  

This is a huge topic and can take many different directions, but let me start with the patient barriers to joining and participating in DOC's, based on my personal patient experience, and from what I witness all the time in the "real diabetes world" that is NOT "online":

1)  Older patients do not have computers.  If they do (from someone in their home), they don't know how to use them.

2)  Both white and blue collar employees who work 40 or more hrs/week simply do not have the time to participate.  

3)  Diabetes patients who are in denial, OR who have made a choice not to fully take care of their disease...and there are A LOT of them, as we all know.....do not want to participate for obvious reasons.

4)  Diabetes patients who have lost their jobs due to the recession...and there are many in this category also....may no longer be able to afford the fee for an Internet Service Provider.  And if they do have access, they are busy surfing the web for employment.

5) Many people are way too private to share personal things on the web, especially when it comes to health matters.  And they are leary/afraid that their bosses, friends, neighbors, relatives, and even their health insurers may discover what they have been hiding.....their diabetes.

6)  Very young people with diabetes have much bigger fish to fry...and enjoy... on the Internet.  Need I say more about them?

That's my 2 cents worth...

Mary Ann Hodorowicz, RD, CDE, MBA, Certified Endocrinology Coder

PresentDiabetes Author of MNT and DSMT Reimbursement Audio Lectures

Eat Well, Laugh Often, Love Much

I rarely come across anyone in our practice who routinely particpates in an online community. The most common things I hear is that there is too much information available online, and definitely too much conflicting information. I give my clients a couple of 'gold-standard' websites:  diabetes.org and dlife.com are two of my current favorites. I tell them to double-check anything they see with the American Diabetes Assn website to verify.

That said, there are some very large DOC out there, so someone must be using them, or at least signing up for them. One I really like is www.sparkpeople.com - they have a couple of diabetes-specific channels that have top-notch information and really active discussions.

Because I live and work in a rural area, I encourage PWD to find online support whenever possible. So far, I'm not hearing feedback from them that they've found anything helpful.

Let's see, in one of my work settings,  my clients communicate with me and other providers,  using a secure intranet (it's called Patient on Line). Here the patient can pose their questions and get access to services, that they normally would be if they would be using their phone.  It's patient to provider, not patient to patient.

I don't see them connecting with any other's in the expanded "web" on line programs.  I agree with Lynn, most of my patients (elders) don't have access to a computer or use them in that way, unless they are advanced, which many are not.

In my work setting where they are younger, they do connect, on facebook, but they have a relationship already.  Campers, staying in touch with campers.

I'm a prediabetic.  I use two of the sites mentioned above.  diabetes.org (ADA) has some long term posters with good information.


Sparkpeople is a very good site.  One can log food, exercise, blood pressure and glucose readings.  One can create custom graphs for pain, medications or anything else the HCP wants to see.  It also has a lot of informative articles and receipes.  The emphasis on weight loss can be a little bothersome because I don't need to lose any weight.     

Linda, you may have some good insight as to what type of folks utilize online communities. What about the online communities is helpful for you? Do you think there's anything diabetes educators can do to encouage our clients with Internet access to utilize the online communities?

My hubby and I were just talking about a few observations regarding the use of FACEBOOK.  So, everyone always appears so happy, and folks don't necessisarly share the "real" struggles in their lives.  There's even some discussion in research about "facebook depression". 

I'm not sure if there is truthful discussion on other disease specific websites.

If I do refer folks, I've used the DESA. 

I have been approached by patients who want to know what are some good support sites on the net. What I find interesting is that the support group forum has been helpful for individuals who quit smoking to maintain their new habits. After doing a quick search on the internet for sources for studies that have done some research on the subject, I did find some articles that suggest that online communities for the support of individuals with chronic diseases can be a social benefit. Some cites are listed below.

I have recommended some online support sites such as the Joslin Diabetes Center site and American Diabetes Association sites for clients. The other perspective that should be thought about with support groups, including online social support groups, is that diabetes is a disease that requires the social support of others in order for the pwd to be successful with their management of the disease. I would pose the question of "What works?" If the social support comes from a reputable social online source and provides needed support, I would be for using it and recommending it.

Barrera, M., Glasgow, R., Mckay, H. G., Boles, S., & Feil. (2002). Do internet-based support interventions change perceptions of social support?:  An experimental trial of approaches for supporting diabetes self-managment. American Journal of Community Psychology. 30(5), 637-654.Retrieved from http://knowledgetranslation.ca/sysrev/articles/project21/Ref%20ID3386-20090723132419.pdf

Heisler, M. (2007). Overview of peer support models to improve diabetes self-management and clinical outcomes. Diabetes Spectrum. 20(4), 214-221. Retrieved from http://spectrum.diabetesjournals.org/content/20/4/214.full

Lynn,

People who use these sites are already pretty motivated.  

 I started looking online for support and education because I didn't qualify for education with my prediabetes diagnosis.  I checked out several types of free help that was available.  Most of it is designed for overweight type 2's.  I wasn't overweight when I was diagnosed.  I have been exercising for long time.  The "lose weight and exercise" advice did not help me at all.  I felt like a right shoe being forced on a left foot.  I discovered the "eat to the meter" approach.  This works.    
     

I am a patient.  I have been on-line for many, many, many years.  I started interacting on-line soon after my diagnosis and joined my first discussion forum in 2006.  There are many dimensions to the resources and social media.  There are some primary elements of social media that have been utilized for diabetes.  The two main ones that I have found useful are discussion forums and blogging.

Discussion forums are areas where people can start a discussion, often with a question and anyone from the community can post a comment.  Almost all forums are moderated to a certain degree.  The worst discussion forums are centers of childish bickering, drive by spamming and bad information.  The best represent vibrant creative communities where the members truly create the "wisdom of crowds."  My favorites at this time are the discussion forums at tudiabetes.org and diabetesdaily.com.  I have also participated in a forum focused on Dr. Bernstein's teachings, which was the first one I joined.  Some of you may know me from my postings in these forums.  I sometimes use the avatar of Alfred E Neuman and have posted thousands of comments in these forums.  The key thing to understand is that these forums provide direct and 24/7 emotional support to those of us with diabetes.  If you have an eating disorder or are having trouble with your blood sugar control you can go to these forums at any time and have people who will listen and try to help.  And while the advice in these forums may directly clash with standard educator sourced advice on things like nutrition, these forums actually filter out bad advice.  If someone posts crazy advice, there are a dozen people (including CDEs and others) who will comment with opposing views.

The second major form of social media is blogging which is essentially a forum fully controlled by an individual.  You create a blog by posting a piece on a topic and others are free to post comments.  Again, these blogs are moderated to a certain degree, but it is operated by individuals.  There are many fine blogs, and then there are others that are really on the fringe.  Blogs are all over the map, but the primary types are inspirational, advocacy and informational.  One of the first ones was DiabetesMine which is primarily and inspirational, but does touch on the other areas.  For informational, a long time classic is Jenny Ruhl's diabetesupdate and her accompanying informational site/book Blood Sugar 101.

There are some real advantages to patients in using the so called DOC.  They can get immediate, direct and private support.  You don't have to reveal who you are.  This enables people to sometimes deal with problems like eating disorders without the stress of having to sit across facing a medical professional who may really not understand or sympathize.  And many PWD go through their lives never interacting with other PWD.  I have met many a T1 who doesn't know a single other T1.  The DOC connects everyone and they all share one thing.  They all have diabetes.

It has been my experience that most medical professionals are not aware of what is happening on-line, fear what might be happening and have certainly not embraced the DOC into their approach to treating and managing diabetes.  Hope has quoted that perhaps 500,000 people have "joined" the DOC, but my experience suggests that behind those numbers are likely 10 times that amount who simply read without joining.  The professional community is a slow adopter.  There are a few from this community who have reached out to join sites like tudiabetes or diabetesdaily.  I encourage you to do that, take part by contributing to discussions and learning.  And understand, diabetes is a chronic illness.  I live with it every day.  I make dozens of specific medical decisions about my diabetes every day.  My medical team is certainly a valued advisor in my adventure, but my team also includes key resoucrces out there in the DOC.  And in the future, it will be important to realize the value and role of the DOC for many of us patients.

Thanks for your insightful comments about DOC Linda and Bruce. I really value your input on this topic.

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.

Natalie -

I appreciate and respect your comments greatly. I am going to bring them to the attention of AADE leaders because I think they are valuable as we move forward with defining levels of diabetes education/educators as well as community health workers.

The good news is that AADE has initiated some outreach and conversations with the DOC. (And I am pushing this dialog along.) I truly think we need to push from both sides and continue to build bridges as I have tried to in this eTalk and the NutriZine.

Thanks for your valuable input!
Hope Warshaw, MMSc, RD, CDE
Nutrition Section Editor, PRESENTdiabetes.com

You present some compelling information Natalie, and I want to follow-up on your suggestion that health professionals work more closely with DOC. What types of activities do you think we can pursue? What's the best way for us to get started?

Based on Lynn’s and Natalie’s recent posts, I remembered that I had this study in my hard drive.

Hope, I also think it would be valuable for AADE to have as they expand DSME into more “virtual” areas and expand the role of educators to include PWD.

Diabetic adults’ conditions improved after phone calls with fellow patients

Blood sugar levels improved for those paired up for support with peers

Phone calls with a peer facing the same self-management challenges helped diabetes patients manage their conditions and improved their blood sugar levels better than those who used traditional nurse care management services alone, according to research from the University of Michigan Health System.

The findings, published Oct. 19 in the Annals of Internal Medicine, showed the peer partner program resulted in lower glycated hemoglobin (HbA1c) levels after six months among men with uncontrolled diabetes.

The research was based on a peer partnership program established by the Veterans Affairs Ann Arbor Health System and the University of Michigan Medical School

Each peer pair received initial brief training in peer communication skills and was expected to communicate by telephone at least once a week about their mutual efforts to improve diabetes control. Program participants also were offered optional periodic nurse-facilitated group sessions to exchange experiences with fellow patients.

“Our model was testing the hypothesis that a good way to activate patients was to give them some skills and encouragement to both help and be helped. Just as in education they say that the best way to learn something is to try to teach it,” says study lead author Michele Heisler, M.D

“We are trying to tap into the underappreciated expertise of patients,” Heisler says. “Most disease management programs put patients in the ‘learner’ role, whether nurse care management programs or ‘expert’ peer programs. But patients know a lot about living with their condition and strategies they have developed so have a lot to share with others also struggling. Our program hoped to mobilize patients themselves to realize how much they themselves had to offer another person with diabetes and enjoy the sense of meaning and pleasure that being needed and helping another can provide.

That’s why I think people did well-- they were very motivated when they felt they were helping someone else.”

In the peer support group, researchers randomly assigned 244 VA patients with uncontrolled diabetes to either peer support or traditional nurse care management. At the start, patients in the peer support group met in a group setting to set their own disease management goals and specific steps they wanted to take over the next few weeks, received basic peer communication tips, were matched with another study participant of similar age (their peer partner), and were advised to talk with their peer partner once per week. For their peer calls they used the telephones but through a system that linked calls without their having to exchange their telephone calls, that enabled them to block calls at certain hours, and that provided reminder calls if they missed a week.

Heisler says she and her fellow researchers expected to see benefits from  the peer support, but were surprised at how large the improvement in glycemic control from the program after six months was. The patients who were randomly assigned to the peer support program achieved HbA1c levels that were 0.58 percentage points lower on average than those in the nurse care management group. And patients in the peer support group with baseline HbA1c levels greater than 8 percent achieved a mean decrease of 0.88 percentage points, compared with a 0.07-percentage point decrease among those in the nurse care management group. This is equivalent to that achieved by starting another oral anti-hyperglyemic medication.

More patients in the peer support group also started insulin therapy at much higher rates than those in the nurse care management group, a step that many patients resist.

“The higher rate of insulin therapy initiation in the peer support group suggests that patents’ concerns about insulin may be best addressed by another person who also is coping with insulin management,” Heisler says.

Heisler says this is the first randomized controlled trial to examine reciprocal peer support in chronic disease management. This can be a low-cost, easy-to-implement system that allows patients to get more one-on-one support in managing a chronic illness, Heisler says.

“Most chronically ill patients need more support for self-care than most health care systems can provide. That’s why programs like this, that increase the quality and intensity of assistance through peer support, deserve further exploration,” Heisler says.

Mary Ann Hodorowicz, RD, CDE, MBA, Certified Endocrinology Coder
PresentDiabetes Author of MNT and DSMT Reimbursement Audio Lectures

Eat Well, Laugh Often, Love Much

For Lynne Grieger:

Most of us oldtimers on the DOC answer lots of basic educational level questions, like explaining what ketones are, and what insulin resistance is, and how weight loss can improve insulin resistance, and how limiting carbs can make the load easier on someone's remaining beta cells, and how exercise may mean that you need to lower your basal, and that you may need to watch out for a delayed low, and how ketones may be a danger signal and need to be watched etc. We also refer people back to the pump and meter companies, for example, when there is a problem that doesn't have an easy obvious solution.

But there are other questions which make me very uncomfortable, such as "my doc put me on metformin 3 months ago, but I keep losing weight and my BGs are not going down." Well, I might have an idea about what's going on, but I CAN'T tell this person anything, except perhaps get a second opinion, which some people are uncomfortable with, and is not available to some people. I'd MUCH rather have a resource to refer them to where they could get help immediately, and guidance as to how to solve the problem. I'm really uncomfortable when people present problems which I am really NOT qualified to answer, but am fully aware that it could turn into an emergency without some kind of medical help.

I'm also concerned with the psycho-social problems which pop up -- we have many people who are deeply concerned, and would like to help, but a person may need more than we can offer, and we have no resources to turn to.

The AADE could be a direct medical resource for people who are really in trouble and haven't found anywhere to turn except to the DOC. We can help with the mechanics and vagaries of daily life (today, I helped a lady who didn't know how to tape down her infusion set with the new IV3000 with the hole in the center so it wouldn't inadvertently pull off), but it's the more serious and possibly dangerous questions that I am uncomfortable with.

I would certainly like a resource where I could send people whose problems were more than I can ethically and conscientiously deal with, EVEN when I have a pretty good idea what's going on. I'm not a doctor (or a CDE), and I don't play one on TV!!! LOL!