• 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

    Being human first: Perspectives around optimizing healthcare interactions


    Tami and Deb enjoying fresh views in Chicago, finding freedom and joy in life.
    T

    Of course different people fulfill different functions in this world. It cannot be otherwise. As far as intellectual or physical abilities are concerned – knowledge, skills, talents, and energy levels – human beings differ widely. What really matters is not what function you fulfill in this world, but whether you identify with your function to such an extent that it takes you over and becomes a role that you play. When you play roles, you are unconscious.“   – Eckhart Tolle

    Deb’s been listening to an Oprah’s Book Club book on Audible, Eckhart Tolle A New Earth: Awakening to Your Life’s Purpose. While Deb has found the book deep, and a challenging “read”, she’s found that it creates an opportunity to take an introspective look at the way we engage in the world. Tolle believes everyone can find “the freedom and joy of life” if they live in the present moment.

    Deb has also been listening to Oprah’s weekly Super Soul Conversations Podcast to review each chapter of the book, typically while taking her daily walk (and it’s helping a lot to understand and internalize the concepts). During a recent podcast there was discussion between Oprah and Tolle about roles people play and how roles inhibit thinking.  In applying some of Tolle’s principles to our mission and vision here @AFreshPOVforYOU, there was an “a ha” moment for Deb around how the #languagematters movement in healthcare needs to expand to include not just the words we use, but also how we implement person first language. (check out our November blog on why language matters here)  To really put the person (not the “patient”) first, there needs to be a “person” on both sides of the interaction for true person centered care.

    One section of Oprah’s weekly podcast addressed healthcare and how when a healthcare professional “plays the role of healthcare professional”, he or she may become “unconscious” of the fact he or she is a human person while embracing their “healthcare role”. And, that the “patient” across from them is also a person. Something vital is then missing. And as a result, the person (“patient) may end up feeling disconnected and dismissed.

    The discussion brought to mind a recent #DSMA Twitter chat that @AFreshPOVforYou joined a couple of weeks ago. One question asked during the chat was: “How can healthcare practitioners facilitate more empowering or effective communication with patients or vise versa?”  One enlightened participant, the incredible behavioral and data scientist Dr. Chandra Osborn replied, “Be a human first – a practitioner second.”  

    Her reply really struck a chord, and aligns with the closing words in Tolle’s quote above, “When you play roles, you are unconscious.“ Let’s repeat that…..”When you play roles, you are unconscious”. How can there be empowering or effective communication if people are not “present” and if they are “unconscious”?

    Along those lines, We @AFreshPOVforYOU have experienced this first hand.

    Deb’s experience…

    Deb recalls a visit with her daughter to the pediatrician where they never once made eye contact. The doctor typed on the computer the whole time, asking impersonal questions and fulfilling her role. They did not feel like they were part of the conversation.

    Tami’s experience…

    Tami remembers a similar scenario while sitting alongside her mom at hospital discharge following her mom’s knee surgery. The healthcare team was talking all “around” both of them, talking to each other, asking questions, giving a multitude of instructions, rarely looking at them or expressing interest in their point of view or concerns. They did not feel like they were part of the conversation either.

    We’ve heard many similar stories from people with diabetes – how at times the relationship with their healthcare provider was not ideal. Some have stated they cancelled an appointment because they didn’t want to be scolded for an A1C value that was higher than expected. Or because their weight was up a few pounds.

    In traditional healthcare people with diabetes are expected to play the role of patient and clinicians play the role of doctor, nurse, dietitian etc.  Yet this type of engagement does not promote healthy communications and relationships. As Tolle recounts, “Authentic human interactions become impossible when you lose yourself in a role.”

    We’ve experienced being on both sides of this equation.  As diabetes educators, we are always striving to improve, but we are not perfect. We’ve made our share of mistakes, but we’ve grown and learned from them. Deb recalls one client she saw years ago that was very frustrated with her because she was following the “assigned content” for the appointment per the prescribed healthcare provider orders, and at the end of the visit the client said, “we didn’t have time for any of my questions!”  That meeting really left an impact on her, she was playing the “role” of a diabetes educator and she never made that mistake again. Fast forward to a more recent experience when she received a call from a healthcare provider who referred his patient to her.  The doctor said, “I’m not quite sure what you did, but Mr. Jones is never satisfied with anything  or anyone, but he could not stop talking about how his appointment with you was the best diabetes visit he’s ever had.”  You know what she did? She started by asking him about his family and recent vacation, and then asked what was going well with his diabetes management?  She was being a human first and he was treated like a person.

    If you follow our blog, you know that we are advocates of solution focused therapy. In the context of solution focused therapy, the client/person with diabetes is viewed as the expert and the most important element is the “therapeutic alliance” between the client and the practitioner.  The relationship is the key to being able to work together. And to build a relationship it requires being present, being conscious of one’s own behaviors, use of language, and body language which all tell a story. We believe it’s critical to enter healthcare exchanges as a human first- not playing a role – with each party recognizing their part in the conversation/interaction as valuable.

    Our goal, through incorporating principles of solutions focused therapy and coaching in diabetes care and education, is to change the conversation, the interaction and the experience of the diabetes community to improve health.  As Eckhart Tolle says, we need to “become conscious of being conscious.”  We need to work as a team, be present in all of our interactions and most of all be human.

    In closing, we leave you with a few thoughts on what you can do when you engage in a healthcare interaction.

    If you are a healthcare provider:

    1. Be human first
    2. Check your ego at the door
    3. Appreciate that the person in front of you is as an expert on their condition
    4. Listen carefully before speaking
    5. When possible, sit on the same side of the table
    6. Understand the burden associated with living with a chronic condition

    If you are a person living with a chronic condition:

    1. Be human first
    2. Actively participate in your medical appointments and your self-management to the best of your ability
    3. Work in partnership with your care team
    4. Be honest about your capabilities

    Subscribe to our blog and we’ll email you when a new post is published!

    Follow us on Twitter and Instagram @AFreshPOVforYou.  

  • Fresh Views

    Language can change your POV

    As National Diabetes Month comes to a close, we’d like to share this blog post written for the Society for Participatory Medicine blog post published November 2, 2018.  

    The language used in healthcare has such a significant impact on how a person living with diabetes FEELS about living with diabetes and how they trust and engage with healthcare professionals.

    If you already know us, you know we support the language movement and encourage everyone to think about language in a new and fresh way. When we drafted the scripts for the two #LanguageMatters videos (links on our web page on the lower right and in the blog post) that’s when we began to think about creating A Fresh POV for You because we knew there were more opportunities to impact the diabetes community in a new and positive way.

    Here are a few quick and easy suggestions, that while simple can be a game changer and help stop the blame, shame, stigma and judgement often associated with diabetes.

    • Instead of using words like adherence and compliance, focus on what the person is actually doing to manage their diabetes.  You can ask about when and how they are taking their medication, focusing on their strengths instead of judging behaviors.
    • Refrain from using language that implies the person living with diabetes is unmotivated or doesn’t care. Instead, recognize the time required to manage a chronic condition and appreciate the hard work they are doing every day.
    • Replace the word diabetic with person living with diabetes all of the time! (However, a person living with diabetes can choose the language that best suits them.)

    As we suggest in the blog mentioned earlier, language choice is a habit, and just like anything else, it takes a little practice to change behavior!  If you start to think about diabetes management from a solution focused approach you will naturally use language that is strengths based and action oriented, and not focused on blame. We can embrace a healthier way of talking about diabetes by changing perspectives on language and the impact it has on anyone living with diabetes. Let’s create fresh, new behaviors because #LanguageMatters!

     

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