It’s been another exciting year in the Diabetes World, with some major strides being made in product design and functionality. Think form and function approaches like One Drop and Livongo Health; Nightscout and Dexcom beating a path toward true data mobility; wristwatch tools that allow us to wear and see that data where it's most convenient; and of course Afrezza, the newly introduced inhalable insulin that is light years ahead of the original, failed product.
You might say that data and device innovation is becoming truly fast and furious in the D-World, and that is something to be very excited about and grateful for. But now perhaps it’s time to focus on how we can truly utilize these tools to LIVE A BETTER LIFE.
Diabetes is burdensome in so many ways, that go beyond just tracking glucose data points… We all could really use some HELP, to make the total picture of managing life with diabetes less complicated, and frankly, less time-consuming. Am I right?
So our concept for the 2015 DiabetesMine Innovation Summit, which took place at Stanford School of Medicine on Friday, Nov. 20, was to take stock of the major challenges of living with diabetes, and what’s being done to address these challenges – i.e. what are the MOST USEFUL solutions that can help us patients in each of these areas?
annual forum's theme was the Usability Revolution, and we brought together about 130 key stakeholders in diabetes: informed patient advocates (our Patient Voices winners), device designers, Pharma
Marketing and R&D folks, web visionaries, experts from venture
capital investment and innovation, regulatory experts, clinicians,
mobile health experts and more. See my opening slides here.
Here's a look at the day's agenda:
Focus on Life Hacks / Usability
Our day was kicked off by keynote speaker Susannah Fox, newly appointed Chief Technology Officer of the U.S. Department of Health and Human Services (HHS), the first woman to hold this position btw. She also leads a new innovation lab for HHS to help employees at the federal agency focus on imagination, invention, and entrepreneurship.
In case you're not familiar with Susannah, she’s a premiere expert on how the Internet and social media affect the healthcare industry and the consumer healthcare experience, with a special focus on people living with chronic conditions.
She recently told the Huffington Post: "The most exciting innovation is not just access to information but access to each other." And this is the person now in charge of improving how the United States government uses technology to deliver and improve health care – pretty exciting!
In her work with the Pew Research Center, Susannah tells me she considered herself an anthropologist in patient communities – combining surveys with field work to get an in-depth look at peer-to-peer healthcare, crowdsourcing, and the real-life challenges patients face. She began to see a growing number of "home healthcare hacks" and began to map this ecosystem of invention.
Her keynote talk at the DiabetesMine Summit was about these healthcare hacks – why the creativity of patients and caregivers may be the most valuable aspect of the whole ecosystem of healthcare. An eloquent speaker, she didn't need any slides to illustrate her point, but brought along some props in the form of a redesigned ambulance emergency placard, and a patient-invented epinephrine injector device called the Auvi-Q that actually talks the user through the delivery procedure.
Next we introduced our 2015 Patient Voices delegates and debuted the Diabetes Life Hacks video they inspired. Then we heard from Howard Look of Tidepool with an update on the #WeAreNotWaiting data and device interoperability movement (see his slides here -- including a recap of what happened the day prior at the Fall 2015 DiabetesMine D-Data ExChange event); we had our annual "state of the union" address on innovation acceleration from FDA; and a rousing overview of what industry is doing to address Usability by human factors expert Joseph Cafazzo of the Centre for eHealth Innovation in Toronto.
The afternoon talks were organized into two groups of what we dubbed "Process Innovations" -- what new and impactful things are being done to help patients in the areas of: Behavior Change, Exercise, Coping with Chronic Illness, Patient-Doctor Relations, Crowdsourcing Research, and Consumer Technology Opps.
Throughout the day, we referred to Peter Morville's User Experience Honeycomb, which has become a benchmark of sorts for evaluating the needed qualities to make a product or service valuable to users. We asked people to keep in mind whether the things they heard about were hitting the mark, to be truly impactful.
The Diabetes Challenges Matrix and Usability Awards
Speaking of what's impactful, the DiabetesMine team unveiled two new projects at the Summit this year, both aimed at mapping the tools, processes, programs, services, hacks and even people that improve life with diabetes.
First up was the DiabetesMine Challenges Matrix – essentially a new way of mapping the whole diabetes care landscape in terms of patient needs. This was adapted from a similar concept used by industry analysts in the Information Technology world. And we created it using the classic industry analyst approach – based on our team’s collective knowledge and observations, from reporting on diabetes for the past 10 years and being involved in industry events, advocacy and policy groups, etc.
It aims to create a new systematic view of the diabetes care spectrum, along the axes of IMPACT and ACCESS -- the two most critical factors in any offering (program or product) that’s meant to help patients best manage their diabetes. IMPACT of course means from the clinical side, but also Quality of Life. And ACCESS is about cost and availability, but also Scalability to the largest possible swath of eligible patients. Of the four quadrants you can see in the image below, naturally the most desirable is the upper right – indicating something that is both High Impact and High Access.
We’re hoping to build an interactive platform that will allow the Patient Community to help us tweak and place stuff on this Matrix, for a dynamic view of what's out there.
The DiabetesMine Usability Innovation Awards is a new a program to highlight some of the "Best-Of" these tools, processes, programs, services, etc. that are actually helping people most, according to input from patients themselves. We crowdsourced this by working with the diabetes research firm dQ&A to survey over 5,000 patients on what helps them most, in four categories: Education, Access, Glucose Control and Design.
See the presentation here, and read all about this Usability Innovation Awards Program and our six winners here.
Launched at the Summit: VitalCrowd & More!
We had several other exciting announcements as well, new national programs launched right on-site at the Summit!
Invent Health: Our keynote speaker @SusannahFox, now CTO of HHS, announced the creation of a new initiative called Invent Health. This is a new platform in the works to further facilitate the Maker Movement in Healthcare, allowing entrepreneurs, designers, patients and regulators to collaborate better. She believes the "wisdom of the crowds" will have as significant an effect on health and healthcare as the open data movement itself, especiallly as the costs of manufacturing go down and 3D printers and other maker-tech starts to become more common and accessible.
She says the new program is about "opening up more doors and windows for people to see in (to the product development process), and also for regulators to see out." Details are still fuzzy, but we're told it will include publishing and other public-access tools for increased innovation, beyond what we've seen with now-mainstream social media.
"We can't have linear solutions to exponential problems," she said, adding that if HHS and the federal government can change and do better on innovation, then anyone -- including regulated diabetes companies -- can certainly do the same!
VitalCrowd: Longtime type 1 patient advocate and data entrepreneur Anna McCollister-Slipp made a splash at the event this year by unveiling a new platform called VitalCrowd, which she is spearheading in her role as Chief Advocate for Participatory Research for the Scripps Translational Science Institute. There, Anna has been working with researchers to develop new ways of involving patients, caregivers and physicians in the design of clinical trials.
She is now Founder of VitalCrowd -- a new platform she’s developing with Scripps to allow crowdsourced collaboration on designing health research, which will involve patients in unprecedented ways.
The colorful, engaging crowdsourcing platform allows patients and researchers alike to propose new study designs, and make comments and suggestions on existing research projects. One key goal is to help the FDA and traditional research orgs to see beyond A1C as the only endpoint for studies, but be encouraged to look at human factors and designing studies in a way that is more in the patients' real-world concerns. As Anna notes, "most clinical trials today are designed for the benefit of everyone BUT the patients." Participants in VitalCrowd can literally go up on the site and propose, "Wouldn't it be great if a diabetes study ________ (fill in the blank)."
Check out these views Anna presented of VitalCrowd (full slideset here):
You are all encouraged to complete a quick registration, in order to get updates and be ready to participate once the site goes fully live in a few months.
Tidepool Uploader and Blip: As you know, we've long been following the work of nonprofit Tidepool, which is building a universal open data platform to allow patients to upload and share diabetes data from any device. Tidepool CEO and D-Dad Howard Look announced at the Summit that the company's long-awaited "Universal Uploader" and Blip data interface app are now ready for use by the D-Community! They're both only available in the Chrome web store for the time being. (To learn more about these Tidepool tools, click here.)
We've seen bits and pieces of the Blip design over the past months, and now we're excited to see this go live to the larger community, and look forward to the forthcoming feedback. Congrats Tidepool team!
FDA Stands with Us
Stayce Beck, FDA's Branch Chief for the Diabetes Diagnostic Devices Team, gave an eye-opening talk about how the agency is prioritizing community engagement and incorporating patient-centered data into regulatory decision-making for devices. Wow!
Among other things, she described what her team is actually doing to engage with the Patient Community and to help improve access to better diabetes tools:
One of the best lines from Stayce actually came during her talk at the D-Data ExChange event the day prior, when she explained that FDA wants to be a partner in diabetes innovation, but per definition must focus on potential risks. "It isn't about creating red tape, but raising red flags," she explained. They've certainly been working hard to reduce red tape over the past few years, in particular when they recently "down-classified" data display systems to allow for faster approval, thus encouraging more innovation. They've also welcomed our patient voice in a more systematic way, accepting meetings with community leaders and holding webcast town hall sessions in which they could field questions from patients at large. We appreciate this new two-way channel of communication, FDA, so thank you!
Human Factors vs. Usability
After hearing from the #WeAreNotWaiting crowd and FDA, we were thrilled to have a talk by Dr. Joseph Cafazzo of the Toronto-based Centre for Global eHealth Innovation on "How the Industry is Embracing User Experience" (see slides here).
Cafazzo leads this state-of-the-art research facility devoted to the evaluation and design of healthcare technology. In fact, he's senior director of UHN's Healthcare Human Factors division – the largest group of its kind devoted to the application of human factors engineering in healthcare delivery and patient safety.
One thing he discussed was the difference between FDA "human factors" requirements, which again focus on possible risks (what might a newbie user do wrong with this thing?) versus actual User Experience Design, which focuses on ease-of-use, aesthetics, and customer appeal.
His talk was both amusing and a bit painful to watch; everyone was squirming in their seats as he showed video snippets of users struggling with the control buttons on various insulin pumps, making remarks like, "Well, that was annoying!" and "Wow, this should be a LOT easier." The point was not to slam any company in particular (all the popular pumps got equal play), but to illustrate that we still have a long way to go to make these tools simpler, more intuitive, and more pleasant to use.
Also on the agenda was T1D-peep Jessica Floeh, an accomplished experience designer who until just two weeks before the Summit, held the position of Lead Healthcare Experience Designer at Intel.
She is also creator of something she submitted to our DiabetesMine Design Challenge competition several years ago – Hanky Pancreas, an accessory line to improve the “anti-social design” and wearability of insulin pumps. She received several innovation awards and grants for this, and was featured at The Mayo Clinic and CNN to name a few.
Jessica talked about her experience in realizing that most insulin pumps were designed by middle-aged men who don't mind wearing clips on their pockets and belts -- and certainly not for young women like herself with an eye for fashion. The message was that it's imperative to put yourself in the shoes of the people you're designing for, or better yet, involve them directly in the design process.
In her work Intel, she brought the same message: "We are multi-faceted human beings, and we need more than what gets past FDA. We need more human factors weaved in." And this has to be more than a one-off "ask a diabetic" but rather a real, meaningful process of collaboration. Amen. (see Jessica's slides here)
More Featured Innovations
Other Process Innovation talks came from these organizations, each addressing a core challenge of living with diabetes with an innovative approach:
SamePage -- a software and services company that believes it has come up with the “secret sauce” to help optimize the behaviors of both patients and healthcare providers using evidence-based behavioral and collaborative care models. Founder & CMO Dr. Paul Ciechanowski presented the system, and showcased how it has been implemented in over 30 sites in the U.S., Canada and India. (See Samepage slides here)
FitScript -- which began in 2012 as a website to help PWDs reach their fitness goals and has since expanded to include the world’s first exercise clinic dedicated exclusively to diabetes prevention and management, based in New Haven, CT. They also offer an online video instruction platform and are insistent that this is not just a program for hard core would-be triathletes, but a platform to help all PWDs benefit from a regular exercise routine and get past the barriers to that. (See Fitscript slides here)
ReImagine – an online learning community that helps people overcome the emotional impact of chronic illness in their lives. Founder Kristin MacDermott explained that the program addresses quality-of-life across all major psychosocial benchmarks: depression, anxiety, distress, self-efficacy, fatigue, etc. by teaching a unique combination of resiliency skills, through an accessible and affordable online environment. They’ve researched this extensively, and have seen incredible results in the cancer community -- and are now looking to expand into other disease states, in particular diabetes – which is exciting given that assistance with coping and the psycho-social side of diabetes is so needed! (see ReImagine slides here)
OpenNotes -- a national program that is allowing patients, for the first time in history, to see what their doctors write about them, and interact in this aspect of their care via an online portal. Given all the buzz about creating online portals as a way to ‘engage patients’ these days – we were happy to have Eileen Hughes of the Beth Israel Deaconess Medical Center come give us the skinny. She is a healthcare benefits manager who also happens to live with type 1 diabetes and several other health conditions. She explained how this type of portal can impact a patient's life, and whether OpenNotes really stands up to all the hype it's getting. Short answer: if you're dealing with multiple health conditions, OpenNotes can be a lifeline, she says. (See Eileen's slides here)
The ultimate goal of the Summit each year is to spark interactions and discussions among the many players present that eventually lead to faster, better development and design and improved access to diabetes care innovations. To that end, we try to encourage as much mixing as possible between our Patient Delegates, industry folk and clinicians, designers, etc.
This year's lively interactive session was led by Bill Polonsky of the Behavioral Diabetes Institute. Attendees were paired up with someone from outside their genre and asked to chew on the question: How can you address a critical problem in diabetes? We literally handed out selfie sticks and asked them to videotape a short chat about their own healthcare hack ideas. We're compiling those video snippets now for publishing soon.
From what we overheard on-site the ideas are looking amazing -- from crowdsourcing patient POV's on insurance policies, to pediatric-personalized insulin pumps that could adapt to different types of insulin, to an online interactive hub where patients could voice their opinions on new devices to industry designers that would include software and fashion designers alongside medical device makers for a fresh approach to User Experience in diabetes care. Nice!
Finally, thank you to our various sponsors and to Stanford School of Medicine for helping make these gatherings possible – in the interests of the Patient Community and ALL the stakeholders pushing for innovation in the name of Improving Life with Diabetes.