DiabetesMine Patient Survey Results - 2013 Summit Overview


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Leading into the 2013 DiabetesMine Innovation Summit, we conducted an independent study on diabetes patients’ sentiments on technology tools and issues affecting their “success” in their own care.

These are the high-level results presented at the event on Nov. 15, 2013, at Stanford Medical School.

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  • (AMY) Leading into this Summit, we’ve conducted an independent study on diabetes patients’ sentiments on technology tools and issues affecting their “success” in their own care.We’d now like to present the high-level findings from this study – a more comprehensive report will be published at Dmine today and will also appear on Slideshare soon. For today’s purpose, we want you to view this as food for thought for our upcoming panel discussion.
  • (AMY) The survey was conducted in September 2013, and included just under 800 engaged patients and caregivers. It was promoted at DBMine, Tudiabetes, DiabeticConnect & a number of other online destinations – so a “convenience” sample of self-selected respondents.So this survey doesn’t represent PWDs in general, but rather those who actively turn to the web and technology – highly digitally engaged patients.
  • (AMY) The core learnings can be boiled to a number of disconnects – because Outcome measures are not patient-driven, cost/insurance access drives adoption and use to an enormous extent, and what we’ve found is that Adherence or Compliance among highly motivated & engaged patients depends A LOT on whether tools are designed to offer real, practical value to patients…Now I’d like to introduce two of our PV winners, Kyle McClain & ChristelAprigliano, to walk you through our high-level results
  • (KYLE) The first issue that emerged is that the priorities of patients and other players do not appear to be well aligned.For example, we very often hear from vendors, researchers and the media the “exciting news” about fewer shots or fingerpricks --while the Quality of Life improvements that patients want most are at a much broader level…
  • (KYLE) When this study asked what quality of life (QOL) improvements are most important, in order of priority, our sample said:I want… 1.     “fewer DAILY glucose highs and lows” (which is more granular than an A1C result) 2.     “to 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. This paints a bigger picture – and while things like “more personal control” and “less hassle” are clearly top of mind for patients, we don’t believe these are endpoints that the industry or medical field are necessarily looking at as measures of “improved outcomes.”
  • (KYLE) We also had an extensive comments section – that gathered over 3,200 patient comments.Here participants very clearly called for measures of improved outcomes that go beyond just A1C results.What they talked about was consistency in their BG readings, a complication-free lifespan, and the ability to live a more comfortable, “normal” life.
  • (KYLE) When asked specificallywhich outcome measures Insurers should focus on in determining which diabetes tools to cover, they did refer to the A1C test, but also rated these other QOL measures of equal importance:·      the frequency and severity of diabetes complications, and·      improvements in daily glucose results (i.e. more “time in range”)
  • (KYLE)They issue of access emerged as a key factor …
  • (KYLE)Two-thirds of respondents told us that access via their insurance is “highly influential” in the diabetes tools they choose to obtain and use. No surprise. We like to think of ourselves as healthcare consumers, but in fact we often don’t have the free choice of consumers…
  • (KYLE) This came up even when we asked people to rate their biggest frustrations with current diabetes tools…Respondents overwhelmingly chose “too expensive” over issues of design or ease of use.
  • (KYLE) This was underscored again in a question about use of continuous glucose monitorsWhen 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,” and “need easier way to analyze the data.”
  • (KYLE) The upshot of this, from the extensive comments section, is that:PWDs’ relationship with D-technology is to a large extent determined by the Price Tag and their ability to get their hands on it…
  • (KYLE)Much of the survey focused on the user experience with these tools – and what came back is that patients find these tools unworkable, in varying degrees.Now I’d like to bring up Christel…
  • (CHRISTEL) For example,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. Remember – this is a group of the most wired patients you will find .... If they’re not obtaining their own data from their glucose measuring devices, then who is?
  • (CHRISTEL)When we asked about use of separate software programs or mobile apps for diabetes data logging, a full 39% said they Never use these tools.At the same time, 34% said they do use them once a month or more – indicating that some are using tools to analyze their data regularly – but only tools that are SEPARATE FROM THE ACTUAL DIABETES DEVICES , which of course is a more cumbersome way to have to go about it.
  • (CHRISTEL)When asked about overall use of smartphone apps for ANYdiabetes purposes, less than one-quarter of respondents said they use one regularly. 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%.Again, among this group of highly wired patients that’s extremely low use of mobile tools designed for D.
  • (CHRISTEL)We had a lot of rich comments about why this is, and what frustrates patients:- The user interfaces…
  • (CHRISTEL)… inaccurate results
  • (CHRISTEL)… lack of interoperability and integration (with other devices and with Mac/Apple iOs).
  • (CHRISTEL)… I hate that there’s a lack of data sharing capabilities. Sometimes strongly worded, like in this comment…
  • (CHRISTEL)What kind of changes would patients like to see to make diabetes logging data more valuable to them?In order of priority they said:programs that can spotlight trendsability to give recommendations for changes in therapy – rather than just storing and displaying raw data capability to view and analyze ALL of their relevant data in one place, andguarantee that a doctor or diabetes educator would take the time to review and discuss the data with them
  • (CHRISTEL)What else do patients want?
  • (CHRISTEL)When we asked them what would motivate them to put extra effort into their diabetes management,We found the top choice was something VERY simple. They want “positive feedback from healthcare providers” (just simple positive reinforcement!)
  • (CHRISTEL)The comments reiterated again and again that patients crave positive feedback for their efforts to control glucose levels “regardless of the results.”Many also mentioned “attention to the mental & emotional aspects of care!” as being key to their motivation.
  • (CHRISTEL)They’d love to have a system that holds patients accountable, while also helping them to make treatment adjustments “in real time”
  • (CHRISTEL)We loved this statement: I want to free up brain cells, with less D-math — and tools designed to not look like a scary medical device, which would also help with the emotional/social issues of using these devices.”
  • (CHRISTEL)In summary, to succeed, patients are saying they needdevices 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 stripsThank you!
  • DiabetesMine Patient Survey Results - 2013 Summit Overview

    1. 1. DiabetesMine Patient Voices Survey A Patient-Led Initiative to Improve Tools & Care Nov. 15, 2013
    2. 2. 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
    3. 3. 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
    4. 4. Priorities Not Aligned ©2013 DiabetesMine Patient Voices Survey
    5. 5. What Quality of Life Improvements Are Most Important? 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
    6. 6. I Want… “More consistency, fewer blood glucose spikes and lows” “A complication-free lifespan” “Better quality of life” ©2013 DiabetesMine Patient Voices Survey
    7. 7. 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
    8. 8. Access is a Barrier ©2013 DiabetesMine Patient Voices Survey
    9. 9. Influence of Insurance on Diabetes Technology Choices N=705 Extremely/very influential Somewhat/Slightly Influential Not at all influential ©2013 DiabetesMine Patient Voices Survey
    10. 10. 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
    11. 11. 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
    12. 12. “I’d like to get more accurate devices, at better prices” ©2013 DiabetesMine Patient Voices Survey
    13. 13. Unworkable Tools ©2013 DiabetesMine Patient Voices Survey
    14. 14. 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
    15. 15. 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
    16. 16. 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
    17. 17. “I hate it that… interfaces aren’t user-friendly” ©2013 DiabetesMine Patient Voices Survey
    18. 18. “… results aren’t accurate enough to rely on.” ©2013 DiabetesMine Patient Voices Survey
    19. 19. “… neither software nor hardware work together – and are not integrated with Mac and iOs.” ©2013 DiabetesMine Patient Voices Survey
    20. 20. “Vendors should quit with the proprietary shenanigans and make technology that will actually help patients and give them access to their own medical information!” ©2013 DiabetesMine Patient Voices Survey
    21. 21. 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
    22. 22. What Patients Want ©2013 DiabetesMine Patient Voices Survey
    23. 23. What Would Most Motivate You to Put Extra Effort Into D-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
    24. 24. “I’d like to receive positive feedback for my efforts to control glucose levels regardless of the results.” ©2013 DiabetesMine Patient Voices Survey
    25. 25. “I’d like to have a system that holds patients accountable, while assisting me to make treatment adjustments in a timely manner.” ©2013 DiabetesMine Patient Voices Survey
    26. 26. “I want to free up brain cells, with less D-math — and tools designed to not look like a scary medical device, which would also help with the emotional/social issues.”
    27. 27. “To get there I need affordable, comfortable, discrete, a nd accurate devices that minimize hassle.” ©2013 DiabetesMine Patient Voices Survey