Traditionally pharma and medical device companies design health tools for health care professionals and in clinical settings. What's been missing is any thought about the end user: the patient.
Even with Silicon Valley recently jumping on the "wellness bandwagon," pumping out new mobile health apps at the rate of an automatic tennis ball launcher, these are typically designed by technophiles, engineers more focused on a gadget's operating system than any meaningful outcomes for patients who will use them.
But there's a movement afoot: the rise of patient voices to influence products related to them. Some of our voices are being sought by health care industry providers, some by patients themselves -- particularly, a patient I happen to know, Amy Tenderich, who began stirring these waters several years ago with a famed letter to Steve Jobs.
Tenderich is founder of the news-rich diabetes blog DiabetesMine and has been on a mission to bring the patient's voice to designing the medical devices we use. Her voice just grew louder with the DiabetesMine Patient Voices Contest.
Diagnosed with Type 1 diabetes in her 30s, Tenderich has made it her personal mission to spur innovation that actually originates with patients. After her letter to Jobs, she launched an online contest called the DiabetesMine Design Challenge, calling for any and all new product ideas that could improve life with diabetes. (The contest was underwritten by the California HealthCare Foundation, and supported by IDEO, a leading design firm with close ties to Stanford University.)
The initiative went viral, developing into an international crowdsourcing competition that has awarded more than $50,000 in prize money.
While competitions asking for the public's wants, needs and votes are now en vogue, particularly regarding diabetes, Tenderich responds that, "patient-centered design remains far more a marketing buzzword than a real process."
So this year she and her team launched the DiabetesMine Patient Voices Contest focused on gathering user needs. People living with any type of diabetes, and caregivers, can submit a two- to three-minute video expressing the biggest challenges they live with, what they like and don't like about current diabetes tools and what they want from their diabetes devices.
Ten winners will receive full scholarships to take part in the DiabetesMine Innovation Summit at Stanford campus this November -- a gathering of stakeholders involved in creating tools for living with diabetes that Tenderich kicked off last year. There, informed patient advocates will mix with device designers, Pharma Marketing and R&D, web visionaries, experts from venture capital investment and innovation, regulatory experts, mobile health experts and others involved in creating "solutions" for people with diabetes.
Winners will also receive the new iBGStar glucose meter from Sanofi, a lead sponsor of "Patient Voices." The iBGStar is the first blood glucose meter that plugs into your iPhone or iPod touch.
Tenderich says, "This product personifies our whole patient-led initiative. It's about integrating the best and coolest consumer technologies with the medical technologies we depend on to live more comfortable and healthier lives with diabetes."
I credit Tenderich for, on her own, starting a movement that's increasingly getting patients' needs and wants on pharma and medical device companies' agendas, and moving them to follow with their own initiatives.
Sanofi now runs a design crowdsourcing challenge that pulls ideas from the public about what matters most living with diabetes to innovate in quality, delivery and the cost of diabetes care. I've been invited to Roche's annual social media summit to exchange thoughts, ideas, needs and wants between patients and pharma, and I've been invited to Medtronic to see what they're up to.
I am grateful for all these opportunities to cross the bridge and bring health care industry providers and patients closer together.
Now we need to keep our voices raised, for as Tenderich says, "No one knows better how gadgets, devices and apps can help patients than patients themselves."
Go to DiabetesMine Patient Voices Contest to participate. Deadline for submissions is June 12, 2012.
Riva speaks to patients and health care providers about flourishing with diabetes and is the author of "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" and "The ABC's Of Loving Yourself With Diabetes." Visit her website DiabetesStories.com.
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