DiabetesMine Patient Voices Survey Results: FULL VERSION

DiabetesMine Patient Voices Survey

A Patient-Led Initiative to Improve Tools & Care

Nov. 15, 2013

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

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 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.


Patient Voices Respondents: by Diabetes Type

N=796

Type 1Type 2 (No insulin)Type 2 (Taking insulin)Caregiver of a child with diabetesOther


Sources for Diabetes-Related Information

Medical providersDiabetes-related print publicationsOnline publications and/or social networksDiabetes EducatorsPeer GroupsBooksInsurance company (i.e. newsletter)


N=625

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)


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


Most Important Factors for Quality of Life Improvements

Feel less alone

Fewer shots

Fewer finger pricks

Improvement in mental state

Less daily hassle

Feel in control of my own care

Fewer glucose highs/lows

0 100 200 300 400 500 600 700

Very ImportantExtremely Important

N=654


Technology Limitations


Frequency of Downloading Data from Monitoring Devices

Never Less than

once a month

Once a month 2-3

times a month

Weekly

0

50

100

150

200

250

300

From my finger stick meterFrom my CGM

N=657


Use of Diabetes Logging Software or Mobile Apps

Often (once a month or more)Sometimes (every few months)Rarely (a few times per year)Only before a doctor's appointmentNever

N=639


Changes Needed to Make Diabetes Logging Data Valuable to Patients

Guaranteed doctor/CDE would review and discuss

Better ability to view/share data

If all data was in one place

If program could suggest a plan of action

If program spotted trends

0 100 200 300 400 500

AgreeStrongly Agree


N=551

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)


Use of Smartphone Apps for Diabetes Care

Diet/food ap

p

Exerci

se tr

ackin

g app

Glucose

logg

ing apps

Other

04080

120160200

N=589

N=589


Access Limitations


Biggest Frustrations with Current Diabetes Tools

N=649


Too hard to use

Doesn't improve control

Complicate my life

Unappealing/uncomfortable

Too much hassle

Too expensive

0 100 200 300 400 500

AgreeStrongly Agree

Influence of Insuranceon Diabetes Technology Choices

N=705

Extremely/very influential Somewhat/Slightly In-fluentialNot at all influential


Biggest Drawbacks of a CGM

Out of pocket costs too highTime investmentAnnoying alarmsUncomfortable to wearNeed easier way to ana-lyze

N=630


Thoughts on Motivation


Motivators to Put Extra Effort into Diabetes Management

"Gamification"

Working in a group/team

Having a diabetes mentor

Incentive program

Positive feedback

0 50 100 150 200 250 300 350 400

LikelyVery Likely

N=609


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)


Patient Perspectives on “Improved Outcomes”


Outcome Measures That Insurers Should Focus On

Other quality of life measures

Medication records

Mental health assesments

Fewer hospital visits

Improvements in daily glucose results

Frequency/severity of complications

Improvements in A1C

0 50 100 150 200 250 300 350 400

Very UsefulUseful


N=487

Real-Life Outcomes That Matter

“I want…”• More consistency, fewer blood glucose spikes

and lows• A complication-free lifespan• Better quality of life



“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.”



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


DiabetesMine Patient Voices Survey Results: FULL VERSION

Health & Medicine

Transcript of DiabetesMine Patient Voices Survey Results: FULL VERSION