There's never been an unbiased comparison shopping site to help people with diabetes find the right devices for themselves -- until now!
Introducing DiabetesWise, a new "one stop hub" for navigating the ever-evolving universe of diabetes devices and technology. Years in the making from a team at Stanford School of Medicine, this platform actually matches user needs with recommended tools, and provides comparative product information and patient testimonials about what it's like to use these devices in the real world.
The effort was driven by some high-profile people in the Diabetes Community, notably Stanford endocrinologist Dr. Korey Hood and healthcare design guru Sara Krugman, who both live with T1D themselves.
Hood tells that over the past five years, the Stanford team has collected human factors data on diabetes devices that either led to to "optimal uptake" of those items being used over time, or were seen as barriers to using devices. "DiabetesWise grew out of the desire to provide a place where we can share those learnings, (and) we are trying to offer an unbiased resource for getting on the devices that are best for each person," he says.
DiabetesWise has been live online since Spring, but had an official launch at the American Diabetes Association's Scientific Sessions in early June, and was showcased at our D-Data ExChange innovation forum. It was also presented at the American Association of Diabetes Educators (AADE) meeting in early August.
An Unbiased Resource
Right, if you think about it: Anytime you need to choose a diabetes device, there's always someone influencing your decision-making: a clinician who may have a particular company preference, an insurance company with a "preferred" brand, or even the local industry reps that your care team puts you in contact with for further information.
While social media has provided a forum for sharing patient reviews, any blog post or video comes from an individual, who may have their own bias -- and the information is not personalized or fine-tuned for your specific needs.
That's where DiabetesWise comes in.
Aside from providing a personalized approach to help PWDs (people with diabetes) make informed choices, another key goal is to serve as a resource for healthcare providers who have patients deciding on these products. The hope is to streamline training on how to pair a PWD with the optimal technology, via "straight-talk" content on these items that industry reps typically can't provide, and clinicians often don't have access to.
The project is funded solely through nonprofit grants and does not accept money from any device manufacturer, for the simple reason that would add in bias, or at least perceived bias.
The team is working on a business plan to ensure this initiative is never is tied to industry funds, although going forward they do want to collaborate with device makers to ensure the site includes all correct information, technical details, and relevant links.
How the DiabetesWise Site Works
When you visit the site, you begin by clicking on the "Check Up" button that leads you to a Device Quiz. Five initial questions ask about which devices you are currently using, how overwhelmed or hassled you may feel, what your priority is when choosing a new device (cost, comfort, ease of use, avoiding lows, or latest and greatest tech) and which are your biggest concerns about D-devices and technology.
From there, you are guided to a section that has more detail about the tools you are already using, and "Wisdom from Others" -- a mix of written and video content from other PWDs talking about their experiences. This user content is literally matched to the priorities you name. For example, if you indicated that you use or are most interested in an insulin pump and CGM sensor, and clicked "Ease of Use" as a top priority, the patient testimonials you'll see will be those addressing exactly that combination of choices.
There are Q&As with users explaining real-world Pros and Cons, tips for dealing with all the data, feedback on how comfortable these devices are to wear, and even tips on how one might respond when other people notice or comment on the devices.
Beyond the "Check Up" button that kicks off the quiz, the other Menu tabs at the top of the site are:
- Sensors - a section with details on CGM (continuous glucose monitor) sensor choices, with three levels of information depending on whether you choose "I've never used one," "I have used one," or "I use one now."
- Devices - a section detailing five use cases: either a CGM sensor and sophisticated 'smart pump'; CGM and basic pump; fingerstick meter and pump; CGM and injections; or fingerstick meter and injections. Each section drills down into highly useful details, including lots of patient testimony.
- Wisdom - drilling down into patients' priorities and concerns, including avoiding BG lows, cost, ease of use, comfort, unwanted attention, trusting the system, and data overload. You can literally filter the content by these sections to address your own most pressing concerns.
- Guides - step-by-step how-to information on getting a CGM, getting an insulin pump, qualifying for insurance, understanding costs, and talking to your doctor.
Sound incredibly useful? Well, it is!
The responses from the community have been amazing so far, according to DiabetesWise Project Manager Sierra Nelmes.
"Qualitatively, the feedback... has been an overwhelming theme of gratitude from CDEs, encouragement from doctors, and an emotional astonishment from people living with diabetes," she says. "It's seen as a resource for people living with diabetes to navigate the options out there and get to a better place with their diabetes. Any skepticism we've heard is usually around doubt that it can be a free resource, before the realization that DiabetesWise.org is free, as well as unbiased and live. That said, we're just getting started and we see plenty of opportunities to further the impact."
Of course, the idea is that PWDs who've used the quiz to navigate their own needs and desires can then share the information they've discovered with their doctor (whether via print-out, email, or sharing the site itself). It's all aimed at helping empower people to take more ownership and be a part of the decision-making on devices, rather than having something pushed upon them without any research behind it.
Constantly Updating Diabetes Tech
The actual work on the website took about 18 months, funded by a grant from the Helmsley Charitable Trust. As of late August, the DiabetesWise site remains in the "Beta" stage, although it's operational and is already roughly 90% complete, the team tells us. They've been working with the Bay Area design companies HealthMade and Gestalt Design, as well as UpShift in New Zealand.
"All of those involved had close personal connections to diabetes in addition to their professional work," Dr. Hood emphasizes. Collaborators include clinical researchers, nurses, diabetes educators, psychologists, and physicians -- while Project Manager Nelmes is in fact the sole full-time staffer on this.
In the first months, DiabetesWise has seen over 70,000 pageviews with a large majority of those in just the past five months. Nelmes tells us they noticed an uptick in July for return visitors, something they're proud of given that a big aim is to build trust over time.
When asked about how doctors have reacted so far, Hood replies: "I would say the feedback's mostly been positive, but like any good clinician, there’s a desire to review and vet the information. So I think some clinicians are very excited about this as an unbiased resource, while others are still warming up to it."
And how will they keep up with ever-changing diabetes technology?
"This will be a living, dynamic website," Hood tells us. "In other words, we have to make sure it stays up-to-date as new devices are approved and new methods of connected treatment become available. We also have to strive to add in more Wisdom stories from a broader community that is more representative of all those living with diabetes and on insulin. We have work to do to reach what is likely the 7.5 million people in the U.S. on insulin who could benefit from using these devices!"