Speaking just for myself, John, I never complained about any of the questions being "offensive" or too personal. I was speaking to the validity of the study structure. I read and share studies and research methodology in my professional life and am aware of certain standards for studies in order for their results to be both valid and meaningful. I would love for there to be professional studies done on the importance of the DOC to the lives of PWD's, but shoddily constructed research can hurt, not help us.
As for "airing personal lives, dirty laundry and so on..to the world"...some of us find comfort, support and increased knowledge from doing so on here, if you don't that's certainly a personal choice.
Thank you, Judith. Greatly appreciated. It wasn't nearly as much myself being offended, as it was the bright and well-meaning woman who put this survey together.
Hey all. I'm super happy to see so much participation in the surveys posted on TuDiabetes, and glad that they spark thought and conversation. Let's all remember that our comments will be read by a real person (Michelle, in this case), and so should be delivered in a kind and respectful way, so that they can be received as productive feedback rather than hurtful criticism.
To others' points about some questions not being applicable or not asked in a manner to honestly respond, I'm sure the questions had to be asked in a somewhat general manner in order to accomodate different experiences. I'm glad Michelle is taking the time to do this and hope that her findings prove useful and worth sharing. I'd be happy to show my CDE and endo!
I kind of felt that way about how I feed my dog. I have been doing raw feeding of all my dogs since I have had them. All the vets are taught by purina or Hill's science diet and haven't a clue about nutrition. I think the same applies to dietary advice to us. Basically it is as if the CDE's, Endorks (thank you AR), and nutritionists all went to classes given by the Pillsbury company. That is if they went to nutrition classes at all.
Completed, it wasn't difficult, I filled in all the blanks, and I hope that some useful information comes out of it. Since I have only been here a few months, it's one of the first surveys I have filled out. While it would have been nice to actually interject some comments in to the form, I'm ok with what it asked and what I answered. Although I too have a problem with the "diabetes health team" or whatever term it was. I get 15 minutes with the endo twice a year, and like most here I use that time to have him fill out prescriptions. It's funny I would actually like a "team" but that is not the case. Although I did answer all the questions as though I did in fact have a "team".
I completed the survey and I hope that the results are used to help promote the wonderful thing that we have going here.
I can tell you that Michelle did reach out to a few people in the community (me included) to make sure that there weren't any offensive questions and that the questions were worded properly. I think this proves that she "gets" us. I don't really think that there is such a thing as a perfect survey, but I do know Michelle and I know that she is a HCP that is working to help other HCPs realize the value of this community and using social media in the management of chronic illnesses.
I keep seeing comments come up about health care team. I guess I am very lucky to have a health care team that consists of a receptionist, endo’s assistant(blood pressure and heart rate specialist) and my endo. Sometimes you just have to think outside the box for the sake of the survey.
My concerns about the validity of the survey aside I agree 100% that having health care professionals who know about, value and promote the use of the DOC is incredible!
I completed the survey. I’d like to have had a chance to comment when answering some of the questions. I noticed several typos, email me for details. Best of luck
Judith, while yes I am sweet, I was more commenting to the lack of adequate nutrtional education both in the medical and veternarian communities. I was amazed when I took my dog in to the vet and she asked what I feed him because his teeth are sparkling white, his breath doesn't stink, and his coat is shiny. I said BARF (biologically appropriate raw food) or meat and bones. She immediately went in to a tirade about how bad that was for him and how he should be on kibble with grains etc he could get salmonella. I found another vet very quickly. I think it is the same with the medical community. Endo's and CDE's in particular because I think in order to become a CDE you actually have to go to nutrional classes to learn what we D's should eat and in what proportions. I just think those classes are still 25 years behind the time and once analog insulins came out and pumps became more automatic and cgms became more the norm than the exception, D's were encouraged to "just eat whatever we want so long as you bolus for it".
I took the survey, just trying to be helpful. Agree that it is very poorly designed. Part of the problem is that there is no way to evaluate the DOC as a whole, seeing as it is made of many different members. i.e. some could be very trained. Others could be very untrained. Who knows?
True, but T1's diagnosed as kids in deep DKA may have a different take on things than those diagnosed with T1 as adults. Maybe more of a social distinction but that might be more important than an actual medical distinction.
Oh, I agree with that Tim. I started a Type 1 women's group and the members contained both those diagnosed early in life and those later in life. There were definite differences in the experience and the outlook of the two groups, but, especially as we got to know each other our similarities seemed more than our differences.For me,five years in and three since my correct diagnosis, I just think of myself as Type 1. The only time the distinction matters is when I'm relating to someone newly diagnosed (or misdiagnosed). Even though most Type 2's are closer to my own 60s age group, I feel I have more in common with other Type 1's even ones who are 40 years younger!
Thank you to the first 82 respondants who completed the survey. As a result I will be donating $164 to the Diabetes Hands Foundation. If you have not yet completed the survey, please take the time to do so. The purpose of this survey is to examine peer-to-peer health within the diabetes online community using tested and validated survey instruments. The results of this survey will help me, other researchers, and other healthcare providers become more aware and understanding of the diabetes online community. Thank you again for your support! -Michelle
Thank you Michelle for taking the time to do this survey, as you can see it has generated some conversation here, but I appreciate the intent and hope that you come up with a more complete understanding of the DOC and how peer to peer interaction helps me and I hope the rest of the community better manage a chronic life long condition like diabetes.
Hey friends! Completing this survey is a great, easy way to help healthcare providers serve and understand us better, AND each survey completed also means a couple more bucks for Diabetes Hands Foundation, which helps us reach out to more people who could benefit from this community, but may not yet know about it. It's a win-win! Lots of folks have already completed it (thanks, y'all!), but if you're not one of them please take a moment to do it.
I just finished the survey, but one part was a bit confusing. Where you had to select a degree between 1 and 7 about whether your healthcare team was, for example, "informed" or "uninformed" I started thinking too much and almost skipped the entire part. All I could think of was "Informed/uninformed about what?" Same with the other questions in that section, and even the next about the online community. I dunno, are you guys moral or immoral? :p And what am I even talking about? Moral diabetes management or moral "take a penny, leave a penny?" I don't know either, just ignore me. The point is...
I DID THE SURVEY! :D
And I somehow have 2 blank replies...will someone delete them please? Sorry 'bout that.
