• Fresh Views

    Co-design: How we are engaging people living with diabetes in designing diabetes education services


    A new day dawning

    Please, let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let patients help define what value in medicine is. –Dave deBronkart, Let Patients Help

    Imagine with us…… a square table. On one side sits the healthcare team. On the other sits their patient living with diabetes. The healthcare team has created a plan and program of great things for their patient that they think their patient needs…without once asking for any input or perspective of that patient – the one who actually lives with diabetes 24/7/365. What if instead, at that same table, everyone is sitting on the same side. The individual living with diabetes was included in the discussion and decision making from the very beginning. The plan and program was crafted around their input. That’s an illustration of co-design. And that is something we strongly believe in. What if relatable individualized solution-focused education services for people with diabetes were co-designed with people living with diabetes?

    What exactly is co-design?

    The Institute for Healthcare Improvement defines co-design in the following way: “Co-design involves the patients in the design process and works with them to understand their met and unmet needs…..This enables us to incorporate the patient perspective directly and immediately.”   In theory it doesn’t sound complicated, but it doesn’t seem to happen very often. The healthcare profession has a long history of the clinician being the “expert” and the patient being the one to “follow orders”. Often, programs and services are designed by the medical staff, independent of patient input. Some more evolved health systems are adding patient and family advisory councils to get feedback and input. However well meaning, they’re often not facilitated to the full potential.With co-design, everyone has an equal say in creating the solution. It is not spending time just getting feedback about programs you’ve already designed….it’s about including people in the decisions from the very beginning.  

    So instead of the healthcare team solving problems they think exist, co-design allows a multi-stakeholder team to first identify the problem that really exists and then develop solutions together. People living with diabetes know what’s worked for them and what hasn’t, and how they would create a program if they had the chance. This is truly a person centered approach to care.

    How has @AFreshPOVforYou been engaged in co-design?

    Supported by a three-year PCORI award, the Intercultural Diabetes Online Community Research Council, affectionately known as, iDOCr, was born (which Deb is a part of). The goal of PCORI is to help patients make more informed healthcare decisions by supporting research that compares the effectiveness of existing, known and proven treatments. All PCORI projects involve patients from the very beginning of every research study or community engagement project. With the iDOCr funding, a stakeholder group was created that represented researchers, clinicians, people working in industry, non-profit organizations and people affected by diabetes (people living with type 1 and type 2 diabetes and caregivers). Both English and Spanish-speaking individuals were included.Together, over the three-year award, this team developed a research question that was important to the group with the goal of eventually receiving funding to conduct the study. One of the main outcomes of this award was very interesting to us….although the majority of the iDOCr patient representatives lived with type 1 diabetes, the team decided to develop a research study focused on type 2 diabetes in the Hispanic community, because that is where they saw the need. This is the essence of co-design; preconceived ideas might have encouraged a completely different research question. The team is about to embark on the research study very soon, so stay tuned for more information. You can learn more about iDOCr via Facebook, Twitter and read the Blogs here.

    We also led the development of two videos to educate about the use of person first language in diabetes.  These 2 videos “Why Language Matters” and “Changing the Conversation” were written and produced using co-design principles. The background and supporting information was first taken from the 2017 paper, The Use of Language in Diabetes Care and Education jointly published by AADE and the ADA. We wanted to understand how language has directly impacted people living with diabetes by learning about real world experiences. We also wanted to learn from healthcare providers how they used empowering, person first language in their practices. So, we developed questions and asked the diabetes community to answer them. We were so overwhelmed with responses that we knew people really wanted to share their stories about why #LanguageMatters to them. From these stories we crafted the scripts for the two films and then we sent the scripts back out to the diabetes community to make sure we got it right. Finally, the videos were filmed with those same individuals, not actors, but people living in the diabetes community. The amazing, talented and Telly award winning creative director from Mytonomy, Mr. Kevin Kuchar created videos that we are so proud of and really reflect the true emotion that language can create and why the language we use in healthcare has a direct impact on outcomes and well being. Read our November, 2018 blog Language can change your POV!

    How are we using co-design now?

    Currently, we are using co-design to help us create diabetes services that resonate with people living with diabetes. Our efforts began with a #DSMA Twitter Chat with the diabetes online community. Questions for the group focused around how diabetes education could bring them joy (read our blog to learn about this discussion). From this information we developed a survey to dive deeper and learn more. One finding from the survey was that most people with diabetes are not familiar with the concept of co-design, which told us that it’s not happening much in the healthcare space where diabetes is being managed. We’d like to change this practice and share with others how its done!  Our next step is to hold a focus group. Each step along the way, we are learning new things.

    We’ll be excited to share out focus group outcomes and learnings later this year. Stay tuned!

    As e-patient Dave said, we want to “let patients help” us move diabetes education services forward in partnership with the real experts, those living with diabetes 24/7/365.

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  • Fresh Views

    Relatable Individualized Solution-focused Education: A Sneak Peek from the @AFreshPOVforYou Retreat

    Relax. Refresh. Renew. Play. Sing. Laugh. Enjoy. Forgive. Dance. Love. Hug. Share. Kiss. Create. Explore. Hope. Listen. Dare. Trust. Dream. Learn. TODAY! ― Steve Maraboli, Unapologetically You: Reflections on Life and the Human Experience


    A view of the gardens at the West Baden Springs Resort in French Lick, Indiana

    Last week’s blog focused on traveling with diabetes. In that spirit, this week’s blog comes to you from French Lick Indiana, home of Larry Bird of Celtics fame, and also the French Lick and West Baden Springs resorts. Working together, but on opposite ends of the country, (Tami in Kentucky and Deb in California) means we have to be creative finding opportunities for in-person meetings. Luckily, things came together……. a spouse work meeting in Ohio, and a visit with a son the Maurer School of Law at Indiana University, created the opportunity for our first formal @AFreshPOVforYou board meeting.

    Over the past several months we have been exploring ideas around creating innovative diabetes education programs and services that are co-designed by people living with diabetes or prediabetes. Basically that means, we are attempting to actively involve people with or at risk for diabetes in the design process to ensure the end result meets their needs.

    If you’ve been reading our blog, then you know that we love “fresh views” and spending time together enjoying beautiful scenery and experiences.  We feel energized and are more creative thinkers when we take a break, are relaxed, seeing things from a new perspective, laughing together, and often with a nice glass of wine!


    Enjoying a horse and carriage ride through the Indiana countryside

    Over the past year we’ve been planning, thinking, strategizing, writing and sharing our ideas with others in the diabetes community to make sure we are on the right track. Incorporating our practice of using solutions focused coaching, we’ve been asking ourselves, “What’s working well for us and what do we want to do more of?”  On a personal note, a few of those replies include the following:

    • Do hard work in the morning when our minds are most creative
    • Take activity breaks
    • Embrace humor
    • Incorporate things that make us happy and that we find joy in
    • Express gratitude for what we see and experience
    • Plan for future retreats to keep us on track and advancing our vision

    We’ve taken a set of possibilities and turned them into opportunities and are excited to see our vision for the future starting to become a reality!

    Our March 20, 2019 blog shared learnings from a Twitter chat that we co-hosted with the diabetes online community focused around what would bring joy when engaging in diabetes education services. We had some insightful and amazing feedback. We decided that we really needed to dig deeper, and find more opportunities for people living with or at risk for diabetes to guide us as we design programs and services. So following the Twitter chat we released a survey (which is open until Sunday 4/21/19 at midnight if you would like to participate). There’s been a fantastic response. We have learned that many are not happy with the diabetes education services they have received in the past and there’s great opportunity to innovate and evolve. We had similar responses from both the Twitter chat and the survey.  People are interested in community and learning from others living with diabetes; they want individualized education and not a “canned program”; and they want to be an equal team member whose experience and knowledge is valued and appreciated.

    To give you  a sneak peek at our next step…..we’ve employed MDR Consulting, a national business research firm to conduct focus groups for us so we can learn more and identify how we might design programs and services that will provide relatable, individualized, solution-focused education (and actually bring people joy)! Our goal is that the voice of the person living with diabetes will be clear and lead the way. For individuals who choose to participate in our online focus group, we are offering a complimentary, 30-minute, solutions-focused coaching session as a thank you for your time. (If you are interested in participating you can complete the survey here).

    We are excited for the future and our next steps. If you’re attending the AADE19 annual meeting in Houston August 9-12, 2019, we’ll be presenting about applying solution-focused coaching tools to diabetes education practice. We’ll share more about our upcoming presentation soon. We are also in the planning stages to conduct a research study incorporating solution-focused coaching.

    Thanks for being on this journey with us. We look forward to sharing our goals and dreams with you and are eager for your feedback.

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  • Fresh Views

    Traveling with diabetes: Focus on diabetes management successes to feel your best and enjoy the trip

    Coastal view in Makaiwa Bay, Kamuela, Hawaii

    Traveling is an important part of our lives @A Fresh POV for you and we live for new experiences, opportunities to learn something new, and, of course, that ever spectacular fresh view!  It’s the time of year when many are on spring break, heading out for spring break, or have just returned from spring break. In fact, Deb just returned from spring break on the Big Island of Hawaii while Tami had a “stay-cation” this year. And so we thought it might be interesting and good timing to ask others living with diabetes how they incorporate travel successfully into life with diabetes.

    As you read on, you will hear from two amazing women living well with type 1 diabetes for over 55 years between them! They are both diabetes advocates and volunteer for the diabetes community. Diane Bajalia is a PODS leader in Jacksonville, FL for Diabetes Sisters (for which Deb serves on the board of directors) and Fran Damian is a volunteer nurse on the medical team for Diabetes Training Camp. Both find inspiration in their volunteer commitments, but also like to take a break and do a little traveling. They shared some tried and true tips for travelling with diabetes with success.

    What works well for you when you travel to stay on track with diabetes management?

    Diane:

    I suppose the first words of wisdom for traveling with diabetes would be to expect the unexpected and try to be as prepared as possible.  When I fly, my carry-on consists of extra CGM supplies, pump supplies, insulin pens, and a full bottle of glucose tablets, as well as protein bars and nuts. Of course, my Kindle, a toothbrush and some makeup are in there, somewhere, as well.  I also put a few glucose tablets in my pockets when I travel. This allows for quick access to treat a low blood sugar while either dashing through an airport terminal dragging a heavy carry-on bag or sitting in an airplane middle seat.

    I love traveling because it is a change of scenery that involves family, friends and fun new experiences! However, what I don’t change is my relationship with my diabetes and my CGM. I have found that I feel better and enjoy my travels more if I remain engaged with my diabetes. There are so many variables that come into play when traveling with diabetes. Many of them, such as flight delays, restaurant meals, and even airport security issues, are out of my control. However, I can be as prepared as possible and continue to use my CGM to Sugar Surf my way through a vacation. I can continue to walk or workout everyday. And I can splurge with foods and drinks and enjoy myself.

    Fran:

    If traveling by plane, I bring low carb snacks on the plane and carry all my diabetes supplies with me. I don’t check them. I wear a pump so I bring a backup of syringes and long acting insulin in case of pump failure.

    What do you try to do more of because you know it works for you?

    Diane:

    I know, for me, that it is easier to manage my blood sugars with smaller quantities of food at each meal. When I travel, I eat foods that I don’t usually eat so mini portions with mini boluses work best. I know that I have a better chance of an “in range” post prandial blood sugar by starting to eat at 80 and using sugar surfing techniques such as smaller frequent boluses or injections.  

    I also walk or go to a gym as much as possible. The residual effects of this are twofold: I feel great and I know that my blood sugars are going to have an extra boost to stay in range that day.

    Fran:  

    Exercise – walk! Find a gym – hotels usually have fitness centers. If traveling for work, I always make time for the gym. My vacations are usually exercise oriented. I don’t ever think being on vacation means I can take a break from exercise.

    Do you have any tips you can share with us?  

    Diane:

    • Easy access to low blood sugar treatment at all times. I leave tablets in my wallet, in my pockets and by my hotel nightstand.
    • Stay calm with airport security … even if it is time consuming, humiliating and frustrating.
    • Walk as much as possible during the vacation.
    • Try new foods and drinks … while keeping an eye on the blood sugar levels.
    • Splurging in moderation is the key for me.

    Fran:  

    I’m fortunate my friends all know I have T1d [type 1 diabetes] and respect my need to take care of it. If they don’t understand, they usually are interested in learning. I think it’s important for travel partners to know enough to help if needed, and also to understand there aren’t many foods ” I can’t have”. Enjoy foods and beverages in moderation, exercise, and check blood glucose often, especially if trying new things.  I really love having a CGM and really appreciate it when away from home.

    Do you stay with your routine or do you give yourself a pass and let go?

    Diane:

    I feel better if I stay with my routine. I think it is hard after 30 years to give myself a diabetes care pass because I physically don’t feel good when my sugars are too high or too low. It certainly happens, especially when traveling, but the less often it happens, the better I feel.  

    When I travel, I usually wear my insulin pump. It makes life with diabetes on the road a bit easier for me. However, on my most recent spring break vacation to Mexico, I took a “pass” on my insulin pump. It sat in a drawer at home and I went MDI (multiple daily injections) . Most of the vacation was going to be spent at the pool or beach and I didn’t want to deal with it. I used a combination of Fiasp, Humalog and Tresiba to combat my tacos and tequila. And it worked! DexCom Clarity gave me a “passing” grade of an average blood sugar of 116 for the week.

    Fran:  

    I like to feel well, and have energy, so I don’t push the limits too much. It’s important to consider high altitudes and time zone changes as both can affect blood sugar. Check to see how your body is responding.

    Do you find travel good for diabetes mental health and diabetes distress?

    Diane:  

    I find any type of vacation good for mental health in general. It is a break from the routines, and stresses, of daily life; it is a break from work, from laundry and cooking, and it is an opportunity to enjoy new experiences with family and friends. However, traveling is not really a break from diabetes. I have been in many situations where I have been unprepared for a low blood sugar (think top of a mountain in Spain), I have forgotten my blood glucose meter (luckily you can purchase those without a prescription), and I have forgotten a syringe to get the insulin out of the vial and into my pump (thank you to the kind Walgreens pharmacist in Milwaukee).  The exception to that is traveling to a diabetes event, a diabetes camp, or some type of workshop filled with people who also have diabetes. I have friends that live all over the US that I have met when traveling to diabetes events. Everyone understands the ins and outs of diabetes care and if you forget something, someone else has it. To me, this is the best way to reduce diabetes distress!

    Fran:

    Yes! Sometimes my diabetes management is even better when traveling. Having time to exercise, menus to choose from, and being away from stressful jobs and other pressure.

    Any suggestions for others?

    Diane:  

    Don’t let diabetes stop you from going anywhere – just be prepared! And perhaps expect a little of the unknown.

    5 Tips for Successful Travel with Diabetes from@aFreshPOVforYou

    We thank Fran and Diane for taking the time to chat with us and share their insights with you. Here are 5 travel tips that have helped clients with diabetes that we’ve worked with over the years to have successful travel:

    Tip #1: Wear a medical identification (bracelet, necklace, etc.) that says you have diabetes and notes if you take insulin. Carry a note from your doctor explaining your diabetes supplies, medicines, devices, and any allergies, along with the information for an emergency contact.

    Tip #2: Carry your medical insurance card (and travel medical coverage).

    Tip #3: Keep a closer check on blood glucose. New foods, increased activity, and different time zones can throw your blood glucose off, so check your blood glucose or CGM more frequently, especially before and after meals, alcohol consumption, or physical activity.

    Tip #4: Crossing time zones. If you take insulin and will be crossing time zones, talk with your health­care team before your trip so they can help you plan the timing of your insulin and meals. Keep in mind that westward travel means a longer day (so possibly more insulin will be needed), and eastward travel means a shorter day (so possibly less insulin will be needed).

    Tip #5: If traveling outside the US, make plans for temporary health insurance coverage if your plan is not effective outside the U.S.

    We embrace focus on strengths and things that have gone well, or “Bright Spots” as our previous blog post discussed. The next time you travel, whether it’s a short weekend or a long international flight, think back to your previous travel experiences and identify what worked well for you and times when you were successful. Start your next journey with that in mind. Try to spend more time doing things that make diabetes easier to manage, while still having fun and enjoying your experience. You might want to even consider writing down your diabetes travel successes in your gratitude journal, so you can go back and recall them the next time you travel. We’d love to see your vacation photos so we can enjoy your fresh views! Please share them with us on our Instagram page

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  • Fresh Views

    Diabetes Bright Spots & Landmines: Insights from author Adam Brown

    Finding Bright Spots puts wind in the sails, rather than constantly tearing them down. -Adam Brown

    Adam Brown  is almost a household name in the diabetes community! He is the Senior Editor of diaTribe.org and author of acclaimed diaTribe column, Adam’s Corner as well as Head, Diabetes Technology + Connected Care, for Close Concerns.  He’s the author of the incredible book, Bright Spots & Landmines: The Diabetes Guide I Wish Someone Had Handed Me,

    His practical guide aligns with our thinking at A Fresh POV for You and our desire to educate the community about solutions focused therapy and coaching approach. We appreciate Adam taking time to share insights around finding and focusing more on what he calls diabetes “Bright Spots,” while setting up safeguards to steer away from stumbling upon diabetes “Landmines”.

    Q1: What are “Bright Spots” and “Landmines”?

    Adam: “Bright Spots” and “Landmines” is a framework for evaluating diabetes habits and decisions.

    The goal with “Bright Spots” is to identify what works and focus on doing those things more often. In other words, “What’s going well in my diabetes that I should keep doing? What happens on my best days? What foods and decisions keep my blood glucose in the tight range of 70-140 mg/dL? What puts me in a positive frame of mind? How can I do more of these things each day?” Examples from my own life:

    • Eat less than 30 grams of carbohydrates at one time.
    • Remember why in-range blood sugars benefit me TODAY (I’m happier, more productive, in a better mood, and a kinder person to loved ones).
    • Walk after I eat and to correct high blood sugars.
    • Get at least seven hours of sleep.

    Conversely, the point of Diabetes Landmines is to uncover what doesn’t work and find ways to do those things less often. “What decisions do I make repeatedly that explode into out-of-range blood sugars values over 180 mg/dl or less than 70 mg/dl? What happens on my most challenging days with diabetes? What choices do I always regret? What repeatedly brings on negative feelings? How can I do fewer of these things each day?” Examples from my own life:

    • Hypoglycemia binge: overeating to correct a low, only to go high afterwards.
    • Eating white bread, crackers, and sugary foods
    • Asking unproductive questions like “How is this this possible?” or “Why am I so terrible at this?”
    • Using all-or-nothing thinking: “Well, I don’t have an hour, so I can’t exercise.”

    Clarifying Landmines upfront helps develop a plan of attack: What safeguards can I set up to avoid them? How can I build routines that reduce the chances of stumbling onto them?

    Most of us are very good at identifying Diabetes Landmines (mistakes), but we rarely ask the opposite (Bright Spots) question: “What is working and how can I do more of it?” Diabetes requires both modes of thinking! And since Bright Spots are often overlooked and undervalued, we must actively cultivate this kind of thinking.

    Q2: How does this framework fit into your book, Bright Spots & Landmines?

    Adam: The book discusses my own “Bright Spots” and “Landmines” in four areas: Food, Mindset, Exercise, and Sleep. I consider these key pillars of living well with diabetes. My #1 goal was to make this book actionable, meaning anyone can pick it up and immediately improve some aspect of his or her life: more time in an ideal blood glucose range; less time managing and worrying about diabetes; less stress and guilt; better relationships and energy and sleep; and a happier mental state. Everything in Bright Spots & Landmines has made a positive difference in my life, and most things include a small step that can be taken immediately. The advice has resonated with people who are newly diagnosed all the way to those with 50+ years of diabetes.

    Q3: How can people get Bright Spots & Landmines?

    Adam:

    1.     Download a free PDF version at diaTribe.org/BrightSpots

    2.     Get it in paperback ($5.78) or on Kindle ($1.99)

    3.     Listen to it for free at diaTribe.org/BrightSpotsAudio or buy it on Audible or iTunes

    Q4: The work we @AFreshPOVforYou are doing is centered around the solutions focused brief therapy approach. How does that align with Bright Spots?

    Adam: It’s easy to come up with a vague list of things I “should” and “should not” do, but Bright Spots and Landmines need to be useful. That means hitting three criteria:

    1. Specific and actionable: “Eat healthy” does not count as a Food Bright Spot – it’s too vague. “Fill half my plate with vegetables” is much clearer.
    2. Realistic and sustainable: “Not eating” does not count as a Food Bright Spot either – it’s impossible to sustain. “Eat slowly and stop before I’m 100% full” is more realistic.
    3. In my control and changeable: “Bad weather” is not an Exercise Landmine – it’s out of my control. On the other hand, “overeating after exercise” is a Landmine that is changeable – I can find ways to avoid it.

    Q5: Tell us about the 42 factors that affect blood glucose.

    Adam: Over the past ten years, I have worn continuous glucose monitoring for over 60,000 hours, run thousands of personal experiments, and learned from some of the smartest minds in diabetes. One of my biggest takeaways is how absurdly complex diabetes is; it’s not as simple as “eat healthy, take your medications, and exercise and you’ll have on-target blood sugars.”

    In reality, there are at least 42 factors that affect blood sugar – food, medication, activity, environmental, biological, and decision-making factors. Many of these factors are barely talked about (e.g., sleep), others are impossible to measure in any given moment (e.g., stress, infusion set function), and we never know what factors are in play in a given moment. Most of Bright Spots & Landmines is about minimizing the impact of those 42 factors. But perfectionism is impossible, given the tools we have and the environment we live in. CGM, coupled with experimentation and reflection, is an amazing diabetes tool to cope with this complexity. Get a full downloadable PDF explaining all 42 Factors here.

    Q6: Would you share an impactful story/experience surrounding Bright Spots that might resonate with people living with either type 1 or type 2 diabetes?

    Adam: The Amazon reviews tell some remarkable stories – people who have dropped their A1c by multiple points, who spend significantly more time-in-range each day, who have renewed motivation to manage diabetes, etc.

    Q7: What guidance would you offer for DEs / HCPs to focus on bright spots?

    Adam: When someone is struggling, the temptation is to focus on what’s going wrong and brainstorm solutions. This “Diabetes Landmines” thinking has value, but it cannot be 100% of the focus!

    A “Bright Spots” orientation – what is working and how can I do more of it? – is just as valuable (and in many cases, far more valuable). Finding Bright Spots puts wind in the sails, rather than constantly tearing them down.

    Here are some questions to help Find Diabetes Bright Spots:

    1. What is going well in my diabetes? What am I doing well that I should try to do more often?
    2. What happens on my best days with diabetes?
      • What do I eat?
      • What does my diabetes self-talk sound like?
      • When and how do I exercise?
      • How did I sleep the night before?
      • What do loved ones do that is helpful?
    3. If I wanted to have one of these Bright Spot days today, what would I do to make it happen?
    4. What times of day or days of the week is my glucose consistently staying in range (70-140 mg/dl or 70-180 mg/dl, depending on your preferences)? What choices might be enabling that to happen?
    5. What is one Bright Spot decision from the past week that – if repeated consistently – would really improve my quality of my life?
    6. What are some small steps that I could take this week to increase my Diabetes Bright Spots? What am I willing to try?

    Thank you Adam for your enlightening solutions focused approach and sharing your first-hand understanding and experience about how to live well with diabetes!  We agree with you that “Bright Spots are often overlooked and undervalued, (and) we must actively cultivate this kind of thinking.” At A Fresh POV for you our goal is to do things differently and encourage building a strong therapeutic alliance by focusing on strengths, solutions, and yes, Bright Spots!

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