DOC and Health Outcomes Research

Diabetes Advocacy Public Advocacy
#1

Hello,

My name is Michelle Litchman. I am a doctoral student at the University of Utah College of Nursing. For my dissertation research I am examining online peer-to-peer health among individuals with diabetes. I am interested in knowing the relationship between the intensity to which someone is involved with TuDiabetes and their health. Currently, there is very little research about the Diabetes Online Community and peer-to-peer health.

I will be gathering data through a confidential survey that can be accessed online. The survey takes about 30 minutes to complete. Please link to the survey here. I will donate $2, up to $1000 maximum, to the Diabetes Hands Foundation for every survey that is completed.

Once the data has been analyzed, I will follow-up with the TuDiabetes community to share my findings. Thank you in advance for your participation.

Best Regards,

Michelle Litchman, MS, FNP-BC
University of Utah PhD Student

AADE 2015 - Does the DOC Benefit or Harm Patients?
#2

This survey is approved by the TuDiabetes Administration.

#3

I'm sorry, I started taking this survey but did not complete it; in part because it was just too long. But also because I thought some of the questions were irrelevant to the topic, wildly general, borderline insulting, and hard to answer in any meaningful way. Some examples: Am I LADA or Type 1? LADA is Type 1. Income? Sorry not something I'm going to share with someone posting on a message board. Health questions: It never asks what other conditions you might have, so there is no way to ascertain whether health constraints you might describe are related to D. Ditto questions about pain. Questions about emotional issues: Same thing; many of the questions don't say "due to diabetes or even "since diabetes" so how to differentiate anxiety/depression or other emotional issues that are not diabetes related. The questions about things like "am I more open to people different than myself since I've come on TuDiabetes"? Is this implying that people can't be open to people different than themselves before having come to TuD and for reasons unrelated to TuD or diabetes? The questions regarding doctors and "diabetes care". The only form of diabetes care I get from a doctor is the writing of prescription. There was no way to put that. Then the questions about various qualities of both doctors and TuD. Moral? Unintelligent? Caring? These are subjective descriptions with little standardized meaning. And in terms of TuD - an organization of 25,000 individuals it has no meaning at all! There are probably people who are moral, immoral, bright, unintelligent, sensitive, uncaring - all the above in those 25,000. How can you answer about "TuD" in general?

Personally I have seen a lot of studies and understand how rigorous a design needs to be in order to show the connections it proposes to show. If I answer that I'm in constant pain and I have trouble completing daily activities, for example, and this is because I have let's say fibromyalgia, then this says nothing about how learning about Diabetes on TuD impacts my health.There are no indicators of causal relationships. Sorry this study is all over the place and the results will be as well.

#4

I completed the survey, I don't think the questions about "morality" or "caring," etc. are great, but they are probably from a previously validated measurement tool, so I don't really have a problem answering them.

I do agree with Zoe that because so many people with diabetes have so many co-morbid conditions that are related to but not CAUSED by diabetes (ex: thyroid issues, celiac disease, other autoimmnue disorders), this survey will be missing a big chunk of information with regard to people's ability to participate in ADLs and whether or not diabetes has anything to do with that. But, since the survey is just looking at "health outcomes" in general, making the distinction between "diabetes health outcomes" and "general health outcomes" probably doesn't make that big of a difference.

Not trying to be critical at all. I'm very glad that people are researching this and taking interest in this subject and the diabetes OC. The more people studying us/diabetes, the better. It will be cool any way to find out the relationship between participation in tudiabetes and ANY health out come, anyway.

#5

You're right, it's pretty poorly designed. For example, on rating your healthcare provider and the DOC, sometimes the "positive" answer is #1 and sometimes it's #7. That could be confusing and result in wrong answers to some questions, simply because the person hasn't taken the time to read carefully. And for a doctoral student, it would have been nice if she'd proofread her questionnaire, just because misspellings are unprofessional. And there is no way for her to know whether someone is just jerking off the questionnaire for their own amusement.

I know -- you came up with solid criticisms, and I'm talking like an old high-school English teacher, but I know my stuff, too! :-)

#6

I did the survey too. I had some objections to some of the questions but I think that it's better to answer them. But maybe I'm in different place and don't mind waving some of my "antlers" around as much. I'd have liked the opportunity for some words. In terms of the questions about Tu, I answered them in terms of how I find the dialogue on the "forums" as that's my favorite part. What are your goals in attacking the survey? Sure, I could razz it too but what do I get out of that? I'd like there to be a finding that the DOC has some value so maybe my answers are skewed. If we attack these surveys, we are left with doctors.

#7

I guess I'm just very sensitive to how studies can be used to state anything, when really there is no connection between what they set out to prove and reality. I don't like sloppy science. Yes, I agree with the conclusion that the DOC in general and TuD in particular make our Diabetic lives better in so many ways. I agree with that with all my heart. Which is why I want any studies that attempt to show that to be valid studies that can't be torn apart by the powers that be that think the DOC is "unprofessional nonsense". Sloppy research will just feed into that belief.

#8

I will take the survey as soon as I can. I think this sort of research can be valuable. While I expect that people who participate actively in the DOC will have better outcomes, people that make an effort at anything related to their health are more likely to do other things that improve their health. It is for this reason that many studies that have high dropout rates are flawed, the patients that remain must be "devoted" to their health and they are likely to take better care of themselves and skew the study results.

One real area that I do think would be an important result is anything that might reveal about how the DOC leads to better informed patients, pointing to areas beyond "support" and highlighting areas where the medical profession is actually failing us. One example of this is dietary advice and the conflicting information on carb restricted diets. I feel like virtually all my health teams have all been horribly misinformed on diets and only on-line was I able to find the facts.

#9

Hi there everyone,

I know Michelle well. She created this survey with the support of many people within the DOC because she is an C.D.E., and Nurse Practitioner that works heavily with people in the diabetes world. She’s seen the need for communities like TuDiabetes, and has focused a tremendous amount of her work and energy towards helping other doctors and CDEs seen the importance of these online resources too.

The amount of information she’s trying to compile in this survey is immense, and she did a great job to organize it as well as she can.

To attack her, or her youthful appearance (as she is a well-established medical professional who presents regular at conferences across the country), is beyond me. She created this survey to HELP US!

Thank you, Michelle!

#10

**And the language used in this survey reflects fairly standard vocabulary of medical-based surveys. It’s chosen carefully so the meanings and definitions of the word are clear and eventually measurable. Like most medical-based surveys, the language is not what we would normally use in conversation, but it is the norm when collection information from a large group of people for research purposes.

#11

I would think that the place to attack reasearch would be when we see the conclusions? For all we know some of the questions could be "red herrings"? I think the way to go is to do the survey, wait for the conclusions and then have a huge flamewar?

#12

Great point, Mike. In this case, though, I know for a fact that her work is designed to help medical professionals understand the importance of recommending and encouraging their patients to seek support from online resources like TuD.

#13

That would require there to be evidence that it actually helps!

I don't see doctors doing that because of the potential for malpractice. I think that most doctors believe that you have to follow their plan, or deviate from it in the prescribed manner. At the same time, like Zoe, I pretty much rely on my doctor to write prescriptions. I don't actually get a ton of "answers" from the DOC but use it to look stuff up. When I got my pump, it was very useful to read how crafty veterans used theirs and it certainly continues to inform my experiments?

At the same time, if I say read and thank someone for the suggestion to say turn my pump up 200% when I'm taking prednisone (which I've done, it worked, I've tossed it out there in threads too...) and I hypo out and run into a day care bus full of toddlers and kill say 15 of them, it may come out [the thank you was typed at a redlight...] that a message board suggestion "caused" or "contributed" to the case. Say I have $500K in liability coverage, that's not really enough for the 15 dead toddlers so say they go after Tu, a NFP (I think?), probably not a ton of coverage there either. Hmmm, if they can prove my doc recommended I use Tu, like it's written in a medical report, suddenly there's the doc's malpractice insurance, maybe a clinic too, more like $5-10 million. It doesn't bring the kids back any more but I could see how that could play out.

Even if Michelle's research substantiates a benefit, and I think docs are aware of the DOC but maybe not the nature of the conversations, I think that docs will not Rx it. They will tolerte it but there's professional barriers to leaving the ranch like that I think.

#14

I completed the survey and came upon a question that did not apply, but that did not have a "does not apply choice". I simply left it blank. The survey accepted my submission in spite of the fact that it was incomplete. So if you have a question that does not apply or you just dislike the question, leaving it blank would seem to be an option

#15

I'm the same as you BadMoonT2 - leaving some areas blank. I did find most of this survey applied to Americans - but it's okay - I'm a semi-American - live close enough to the border to "almost" be one of you. I personally did not have any issues with this survey like some of the above members had - but I'm Canadian - that's all I'm saying \\^,,^//. Good luck Michelle in getting lots of responses back to your survey - especially if it helps the medical community understand diabetics better.

#16

I don't think anyone is attacking HER -- just the way the survey was designed and put together. For example, when she asks about whether my medical team is knowledgeable, what if my doc is a pro, but my dietitian doesn't know where she's coming from? And I think Zoe raised some valid points too.

In my honest opinion, she should redesign the questionnaire to make it consistent (my point about the presentation of the questions, above), and more specific, for example, rewording the questions to make them diabetes specific, if that's what she means. If all she cares about is whether pain makes the activities of daily living difficult, fine, but if she wants to know if it's due to diabetes, then all she has to do is make it say "pain due to diabetes complications".

I think the folks here simply want a GOOD study that can't be shredded by people who WILL nitpick the details.

#17

I guess I think differently than most of you. I thought it was a good survey.

Maybe some of you are expecting to much out of a survey. I can tell she put a lot of thought into it. Hopefully she finds out what she is looking for. Peace Everyone!

#18

The Consent and Authorization Cover Letter covers the leaving of some replies blank. So that's what I did, particularly the ?s about my healthcare team, since they don't function as a team.

#19

I didn't see any questions that where offensive to me. It's funny how some individuals have complained about some of the questions but will spend every day on the DOC airing their personal lives, dirty laundry, so on and so on to the world ... JMHO

#20

I completed the survey and honestly don't see what the fuss is about. I would have liked to be able to explain some of my answers, but I have the same issue with some of the surveys on TuAnalyze. I think we have to remember that the survey has to be in such a format that the data can be compiled and analyzed.

I work with numbers every day and I learned a long time ago that you can make numbers show anything that you want them to show based on the assumptions that you make and the spin that you create. :)