DiabetesMine Patient Voices Survey Results: FULL VERSION

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The DiabetesMine™ 2013 Patient Voices Survey was conducted in September 2013 and includes data from nearly 800 patients and caregivers active online. It was promoted here at the patient news site DiabetesMine.com, and on TuDiabetes, Diabetes Daily and several other diabetes networking sites. Respondents are therefore a self-selected group of the most active and engaged patients and caregivers.

Our survey has found that according to patients, the factors that would most improve their quality of life are not being sufficiently met by diabetes technology currently in the market. The survey shows patients attribute this to two factors: one being the technology itself, and the other being limitations on access to the devices.

Review the full report of results here.

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  • The DiabetesMine Patient Voices Survey includes data from nearly 800 patients and caregivers active online, and was conducted in the summer of 2013. It was promoted here at the patient news site DiabetesMine.com, and on TuDiabetes, Diabetes Daily and several other diabetes networking sites. Respondents are therefore a self-selected group of the most active and engaged patients and caregivers.
  • Sources for diabetes related information27% - Medical providers25% - Online publications and/or social networks16% - Diabetes-related print publications14% - Diabetes educators8% - Peer groups
  • Overall, what emerged from this survey are three themes –The Priorities of patients and other stakeholders are not aligned (what are “improved outcomes” that matter most?)Cost/ insurance access is a huge barrier (we like to think about PWDs having free choice of products like consumers, but not really so)Adherence/Compliance is to a large extent a design issue – patients will not and are not using tools that don’t accomplish something meaningful for them – without excess hassle 
  • Specifically, according to patients, the factors that would most improve their quality of life are NOT being sufficiently met by diabetes technology currently in the market. The survey shows that patients attribute this to two factors: one being the technology itself, and the other being the aformentioned limitations on access to the devices.
  • What are the most importantquality of life (QOL) improvements patients seek? In order of priority, our sample said:1.     “fewer glucose highs and lows”2.     “feel more in control of my own care”3.     “less daily hassle”Interestingly, “fewer shots” and “fewer fingerpricks” rated toward the bottom of a list of seven QOL priorities. 
  • Regarding limitations of existing diabetes tools on the market…
  • Among this group of highly engaged respondents, over 40% reported that they “never” download or view reports of the results from their fingerstick glucose meters, and 60% never do so with their continuous glucose monitors.
  • At the same time, almost 35% said they do use software or mobile apps for diabetes data logging once a month or more. DATA:Use of diabetes logging software, mobile apps, or programs39% - Never34% - Often13% - Sometimes7% - Rarely7% - Only before a doctor's appointment
  • Respondents indicated that the changes most needed to make diabetes logging data more valuable to patients, in order of priority are:programs that spot and highlight trends in the data ability to give recommendations for changes in therapy – rather than just storing and displaying raw data capability to view and analyze their glucose data, insulin dosing records, food and exercise records and other relevant data all together in one place, andguarantee that a doctor or diabetes educator would take the time to review and discuss the data with patients DATA:Changes Need to Make Diabetes Logging More ValuableIf program spotted trends - 86%If program could suggest a plan of action - 83%If all data was in one place - 79%Better ability to view/share data - 62%Guaranteed doctor/CDE would review and discuss - 62%
  • In addition, survey respondents entered more than 3,200 written comments in response to a number of open-ended questions; a consistent theme was frustration over lack of interoperability and integration (with other devices and with Mac/Apple iOs), and lack of data sharing capabilities.
  • When asked about overall use of smartphone apps for diabetes purposes, less than one-quarter of these highly wired patients reported using them. Even among those who did, use of diet and food apps ranked first, followed by exercise tracking, and glucose logging apps ranked last, being used by only 19%.
  • The other factor holding back the success of diabetes tools for patients is the issue of access…
  • When asked to rate their biggest frustrations with current diabetes tools, respondents overwhelmingly chose “too expensive” over issues of design or ease of use. DATA:Biggest frustrations with current diabetes tools (I combined the agrees and strongly agrees, but let me know if you want the answers separated):Too expensive - 67%Too much hassle - 37%Unappealing/uncomfortable - 36%Complicate my life - 33%Doesn't improve my control - 31%Too hard to use - 26%
  • Two-thirds of respondents also stated that access via their insurance is “highly influential” in the diabetes tools they choose to obtain and use.DATA:Influence of Insurance on Diabetes Technology ChoicesExtremely/Very Influential - 67%Somewhat/Slightly Influential - 21%Not at all influential - 12%
  • Emphasis on the financial burden was underscored in a question about use of continuous glucose monitors, powerful devices that have nevertheless been slow to gain mass adoption. When asked to rank the biggest drawbacks of these devices, 46% ranked “out of pocket costs too high” as a bigger issue than other common complaints, including “annoying alarms,” “uncomfortable to wear,” “too much time investment,” and “need easier way to analyze the data.”DATA: Biggest drawbacks of a CGM46% - Out of pocket costs too high20% - Uncomfortable to wear16% - Annoying alarms15% - Need easier way to analyze3% - Time investment
  • The survey also asked patients about motivational factors in their own care – which of course is germane to the Healthcare Establishment’s current emphasis on Patient Compliance/ Medication Adherence …
  • When asked to rate factors that would likely or very likely motivate them to put extra effort into their diabetes management, the top two choices were “positive feedback from healthcare providers” (i.e. simple positive reinforcement) — followed closely by“incentive programs” (financial rewards, discounts, etc.)DATA:Positive feedback - 62%Incentive program - 50%Having a diabetes mentor - 44%Working in a group/team - 41%Gamification - 30%
  • In the comments section, respondents consistently mentioned the desire to: get more accurate devices, at better pricesreceive positive feedback for their efforts to control glucose levels “regardless of the results,” and have a system in place that holds patients accountable, while assisting them to make treatment adjustments “in a timely manner”
  • Exploring further into patients’ real-world concerns, they were also asked about what “Improved Outomes” really matter to them…
  • When asked which outcome measures Insurers should focus on most in determining which diabetes tools to cover, respondents indicated that two factors of nearly equal importance to the currently used A1C (test of three-month glucose level averages):·      the frequency and severity of diabetes complications, and·      improvements in daily glucose results (i.e. more daily “time in range” – as opposed to A1C, which indicates only an average level over the previous 120 days)
  • In the extensive comments section, survey participants called for Insurers to broaden their focus beyond the A1C test, which “does not sufficiently reflect the current or long-term well-being of patients with diabetes.” Respondents would like to see new measures of “patient satisfaction, better overall health and fewer complications.”
  • To this end, survey commenters called for diabetes decision-makers to help them with the following:Obtain devices that are comfortable, discreet and accurateThat can predict glucose highs and lowsThat require less thinking about the daily concerns of diabetes, assist with more time in range, less hypoglycemia Move beyond proprietary systems to allow data sharing for a “full picture” of diabetes management, and give patients unrestricted access to their own medical informationRequire less hassle with insurance / billing — both in terms of insurance filing requirements and access to necessary consumable ongoing supplies such as glucose test strips
  • It was interesting to quantify these core learnings – because to many patients, these statements may seem like obvious facts of life. But they encapsulate the challenges that diabetes care faces across the board in the years to come.
  • DiabetesMine Patient Voices Survey Results: FULL VERSION

    1. 1. DiabetesMine Patient Voices Survey A Patient-Led Initiative to Improve Tools & Care Nov. 15, 2013
    2. 2. About DiabetesMine • Founded by journalist Amy Tenderich in 2003, following a diagnosis with type 1 diabetes. Now a top-ranking health blog. • Editorial Objective: to provide people affected by diabetes with high-quality information, emotional support and a platform for connections and collective advocacy. • Advocacy Mission: to help patients to act as catalysts for innovation and change, and mine patients' experience as a resource to each other and to the greater disease community. ©2013 DiabetesMine Patient Voices Survey
    3. 3. About the Patient Voices Study • Purpose: to provide insight into the mindset and needs of people with diabetes (PWDs) that can be shared with those in the diabetes industry in order to enact truly patient-centered changes in current diabetes technology. • The study provides insight into the following topics: – Experiences with diabetes devices – Use of logging software and health apps – Patients’ mindset re: diabetes tools • Study conducted by DiabetesMine research team ©2013 DiabetesMine Patient Voices Survey
    4. 4. 2013 Patient Voices Methodology • Study was conducted as an online survey of people with diabetes and caregivers. • Close to 800 participants. • Those surveyed were part of a convenience sample; they were recruited to participate through DiabetesMine.com, social media and other diabetes online destinations. ©2013 DiabetesMine Patient Voices Survey
    5. 5. Patient Voices Respondents: by Diabetes Type N=796 Type 1 Type 2 (No insulin) Type 2 (Taking insulin) Caregiver of a child with diabetes Other ©2013 DiabetesMine Patient Voices Survey
    6. 6. Sources for Diabetes-Related Information N=625 Medical providers Diabetes-related print publications Online publications and/or social networks Diabetes Educators Peer Groups Books ©2013 DiabetesMine Patient Voices Survey
    7. 7. What We Learned 1. Priorities are not aligned (who defines “improved outcomes”?) 2. Cost/ Insurance Access is a huge barrier (thwarts consumer choice in medicine) 3. Adherence/Compliance is to a large extent a design issue (tools must accomplish something meaningful for patients) ©2013 DiabetesMine Patient Voices Survey
    8. 8. Specific Takeaways • According to patients, the factors that would most improve their Quality of Life are NOT being sufficiently met by diabetes technology currently in the market. • The survey shows patients attribute this to two factors: – the technology itself, and – limitations on access to the devices ©2013 DiabetesMine Patient Voices Survey
    9. 9. Most Important Factors for Quality of Life Improvements Fewer glucose highs/lows Feel in control of my own care N=654 Less daily hassle Improvement in mental state Very Important Extremely Important Fewer finger pricks Fewer shots Feel less alone 0 ©2013 DiabetesMine Patient Voices Survey 500 1000
    10. 10. Technology Limitations ©2013 DiabetesMine Patient Voices Survey
    11. 11. Frequency of Downloading Data from Monitoring Devices 300 250 200 N=657 150 From my finger stick meter 100 50 From my CGM 0 Never Less Once a 2-3 than month Weekly times a once a month month ©2013 DiabetesMine Patient Voices Survey
    12. 12. Use of Diabetes Logging Software or Mobile Apps N=639 Often (once a month or more) Sometimes (every few months) Rarely (a few times per year) Only before a doctor's appointment Never ©2013 DiabetesMine Patient Voices Survey
    13. 13. Changes Needed to Make Diabetes Logging Data Valuable to Patients If program spotted trends If program could suggest a plan of action N=551 If all data was in one place Agree Strongly Agree Better ability to view/share data Guaranteed doctor/CDE would review and discuss 0 100 200 ©2013 DiabetesMine Patient Voices Survey 300 400 500
    14. 14. Frustrations: “I Hate It That…” • Interfaces aren’t user-friendly • Results aren’t accurate enough to rely on • Neither software nor hardware work together – and are not integrated with Mac and iOs • “(Vendors don't) quit with the proprietary shenanigans and make technology that will actually help patients and give them access to their own medical information!” (source: 3,232 written responses to open-ended questions) ©2013 DiabetesMine Patient Voices Survey
    15. 15. Use of Smartphone Apps for Diabetes Care N=589 200 150 100 50 N=589 0 Diet/food Exercise app tracking app Glucose logging apps ©2013 DiabetesMine Patient Voices Survey Other
    16. 16. Access Limitations ©2013 DiabetesMine Patient Voices Survey
    17. 17. Biggest Frustrations with Current Diabetes Tools Too expensive N=649 Too much hassle Unappealing/uncomfortable Agree Complicate my life Strongly Agree Doesn't improve control Too hard to use 0 100 ©2013 DiabetesMine Patient Voices Survey 200 300 400 500
    18. 18. Influence of Insurance on Diabetes Technology Choices N=705 Extremely/very influential Somewhat/Slightly Influential Not at all influential ©2013 DiabetesMine Patient Voices Survey
    19. 19. Biggest Drawbacks of a CGM N=630 Out of pocket costs too high Time investment Annoying alarms Uncomfortable to wear Need easier way to analyze ©2013 DiabetesMine Patient Voices Survey
    20. 20. Thoughts on Motivation ©2013 DiabetesMine Patient Voices Survey
    21. 21. Motivators to Put Extra Effort into Diabetes Management Positive feedback Incentive program N=609 Having a diabetes mentor Likely Very Likely Working in a group/team "Gamification" 0 100 ©2013 DiabetesMine Patient Voices Survey 200 300 400
    22. 22. Motivators: “I’d Like To…” • get more accurate devices, at better prices • receive positive feedback for my efforts to control glucose levels regardless of the results • have a system in place that holds patients accountable, while assisting me to make treatment adjustments in a timely manner (source: written responses) ©2013 DiabetesMine Patient Voices Survey
    23. 23. Patient Perspectives on “Improved Outcomes” ©2013 DiabetesMine Patient Voices Survey
    24. 24. Outcome Measures That Insurers Should Focus On Improvements in A1C Frequency/severity of complications N=487 Improvements in daily glucose results Fewer hospital visits Very Useful Useful Mental health assesments Medication records Other quality of life measures 0 50 100 150 200 250 300 350 400 ©2013 DiabetesMine Patient Voices Survey
    25. 25. Real-Life Outcomes That Matter “I want…” • More consistency, fewer blood glucose spikes and lows • A complication-free lifespan • Better quality of life (source: written responses) ©2013 DiabetesMine Patient Voices Survey
    26. 26. “To Get There, I Need…” • Affordable, comfortable, discrete, and accurate devices that minimize hassle • “To free up lots of brain cells — less D-math, less worry over impending problems … (with something) easy to use and carry and decipher — and wouldn't look like a scary medical device, which would also help with the emotional/social issues of using current devices.” (source: written responses) ©2013 DiabetesMine Patient Voices Survey
    27. 27. Learnings Summary 1. Outcome Priorities are not aligned (i.e. not patient-driven) 2. Cost/ Insurance Access is a huge barrier 3. Adherence/Compliance is significantly impacted by design factors ©2013 DiabetesMine Patient Voices Survey

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