Meet iDOCr!

Diabetes Advocacy
#1

Hey friends,

I would like to introduce the Intercultural Diabetes Online Community Research Council, or iDOCr. Diabetes Hands Foundation is part of this multi-disciplinary research group. Funded through a PCORI grant (watch the video below, about PCORI grants), the goal of our work is to identify opportunities for patient centered comparative effectiveness research. Please answer the following 2 questions to help us begin to refine the patient-centered research project we will conduct!

  1. What health outcomes (clinical and quality of life) do you think can
    be improved by being a member of the diabetes online community?
  2. How can we encourage people with type 2 diabetes to engage in social
    support via social media?

We will use the answers to these questions begin to develop research questions that impact members of the diabetes online community.

Principles of PCORI grants

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#2

  1. Better glucose control by learning tips from so many real life experiences we share in the DOC and understanding and consequently advocating for our rights as people (or parents of people) with diabetes.

  2. By being accepting of the differences and similarities between the different forms of diabetes.

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#3

1.) Better blood glucose control marked by less variability, fewer lows, and overall lower average blood glucose. When these measurable blood glucose outcomes improve, better quality of life follows. The DOC is well suited to this because their deep experience, often measured in 100s of thousands of hours, and because we’re situated across many time zones around the world, we are available 24/7/365.

2.) We can each encourage people we meet face to face to stop in and check TuD out online. When new T2Ds visit us online we should go out of our way to make them feel welcome. We must be able to communicate right away that this is a “no blame, no shame” zone. And not because we want to be nice to new visitors and guests but because science currently indicates there is no factual basis for blaming and shaming. It is an out-dated cultural and damaging myth! Perhaps a strongly-worded piece about this aesthetic could be pinned to a welcome page targeted at T2Ds. It should also become apparent quickly to new T2D visitors that other T2D members attribute some of their success to their participation at TuD.

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#4
  1. Not only better blood glucose outcomes but also better all round health via low carbing and exercising.
  2. Terry is so right about the blaming and shaming that seems to be an integral part of the T2 experience.
    Diabetics seem to be given misleading information on DX, very few T2s in my orbit understand the importance of lowering their carbohydrate intake. I live in a retirement village where one T2 diabetic is having leg and toe (on the other leg) amputations, another had a serious car accident due to a blackout, two have serious eye problems. This is only amongst the people I know in this large village. I am not a very social person here because most events involve food, generally cakes or sandwiches and I can’t handle the ‘just this once won’t hurt you’ crowd, plus I am weak willed when it comes to food. Tablets or iPads are somehow not seen as computers, their use may encourage very many older diabetics into social support on social media.
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#5

  1. Better control (especially time-in-range) by learning from experienced participants on how to use diabetes technology successfully and also feeling connected to others dealing with similar problems and concerns (particularly those of us in small/rural communities).

  2. Enlist the help of diabetes educators in making information about DOCs available to their patients (new and returning) and helping them get online (if needed).

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#6

  1. Being part of the DOC helped me change my relationship with the healthcare system. It helped me take charge of my own healthcare, it helped me fire doctors who didn’t help me and it helped me both be happy in my life and reach my goal levels of diabetes control. I might never have attained this level of clinical control of my diabetes if I had simply done what the healthcare system told me.

  2. I believe that many people with type 2 diabetes are burdened with the stigma of being told they caused their diabetes. It comes at them from all sides, healthcare, the public attitudes and even at times from the DOC. I think we need to embrace everyone with diabetes and treat everyone with empathy and encouragement.

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#7

  1. Finding the DOC was very important for me as I got a sense that what I was doing was, in fact, the best way to approach a challenging disease. I was able to share my stories of successes and failures and learn to “oops and move on” and lose the sense of doing things incorrectly. As Phil Lesh has said about music, “there’s no wrong notes” but you just have to keep playing. We don’t really have a choice but through community, we can feel stronger about our choices

  2. both for T1 and T2, I think the largest barrier to engagement is the sense that only doctors will dispense medical advice and that doctors rarely approach diabetes beyond the medical targets which are very conservative and may set us up for mediocre performance. Diabetes of any variety obliges patients to both make decisions and then deal with the consequences of these decisions all the time. In learning different approaches to diabetes management, PWT2 can become more empowered to evaluate their condition more effectively and learn new techniques with which to approach T2. And the same goes for T1. We are the ones with our boots on the ground and a doctor’s visit every 3-4-6 months is not enough time to establish effective management. Talking with our buddies online gives us a useful sounding board and an encouraging group of people with which we can share our experiences.

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#8

  1. The most significant outcome is quality of life. There are clinical measures of that. I am not sure how widely used but that doesn’t lessen the importance of them. Also glucose control. A1C is a cheap measure both in financial terms and in the slang use of the word cheap meaning not great quality as it misses the mark on variability, excessive lows and highs etc.

  2. I fall into the glass partially full camp. Stigma exists and the worst is self inflicted. BUT the key is for PW(T2)D to see the quality of life improvement of having peers to walk with. We are not alone. The real harm of stigma is it isolates people, the DOC connects them. If we focus on the negative it just give the negative more press. if we focus on the positive, more will connect. 2¢.

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#9

What health outcomes (clinical and quality of life) do you think can be improved by being a member of the diabetes online community? Better diabetes management by learning from others who live with diabetes successfully and can speak on the subject, best practices, and ways to fine tune.

How can we encourage people with type 2 diabetes to engage in social support via social media? Provide information on engagement levels - as much or little as wanted/needed - encourage peer sharing, provide a non-judgment zone, a place of compassion and understanding.

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#10

  1. What health outcomes (clinical and quality of life) do you think can
    be improved by being a member of the diabetes online community?
    For me a lot of managing diabetes goes on in my head. It requires both knowledge and emotion. I find both useful information and positive role models in the DOC.

  2. How can we encourage people with type 2 diabetes to engage in social
    support via social media?
    Show people with type 2 what they can do to better manage their BG levels and overall health. Make the information actionable. Combat the perception that all type 2s can do is take a pill and hope for the best the rest of the day.

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#11

  1. My discovery of the DOC is recent and came after many (60) years of very little connection with other PWDs. My quality of life has definitely improved because of the connection with others who share similar life experiences. I’ve learned a lot of disease management tips, but most importantly have gained more friends.

  2. Welcoming people with type 2 to connect for support with others living with this disease. Provide education without judgement. The type 2 people I know desperately need basic education in diabetes management. The only thing they appear to be getting from their medical teams is blame and that doesn’t encourage them to seek connections with other PWD.

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#12

  1. Connecting with people who understand what you’re going through is essential to dealing with the mental side of diabetes. Hearing what other patients have tried in order to control their diabetes can help people think beyond their doctor visits and try different methods in their own lives with diabetes. People need to hear that it’s ok to try something that is new to them and then discuss their successes with their health care team.

  2. This one is tough. I feel that many people with type 2 are older and less likely to participate in social media. Many lurk and read but so many don’t actively participate. For the lurkers, we can try to be supportive of those who do participate therefore encouraging others, and shine a light on what living with diabetes looks like so that we can be an example (of not just the good stuff but the hard stuff too so they can say “me too”.) For those not actively engaged online, I feel that it would take cooperation from health care providers in order to turn people in the DOC direction. Possibly provide a brochure. Not sure how you get the doctors to actually hand them out.

#13

  1. I think the most important aspect is the ability to share common experience and find a sounding board. It’s about finding the resources we need to take health into our own hands and also advocate for care.

  2. As a few people have mentioned, people with T2 are BOMBARDED with blame, messages that say “this is completely your fault and was in your control to prevent.” A welcoming environment, with real information and support, can mean so much to people (and has to me) who are drowning in feelings of shame. Plus - real information, not just scare tactics. More stories of “my neighbor is a lazy T2 and now has to have his foot amputated” doesn’t actually help me in anyway, it just makes me feel labeled and categorized. Information without judgement - that’s what I need.

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#14

Nicely put.

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