Eve wouldn’t be here today if her heart disease hadn’t been caught days after she was born
As we count down to the Patient Voice Impact Award ceremony in Washington, DC December 2nd, here are some voices and ideas NOT submitted for award consideration, but too awesome not to share. (Hint: submit for next year’s award?) I ran into the ones below at the Partner’s Healthcare 2015 Connected Health Symposium in Boston. I saved the best for last. Opinions and any errors are mine, not PVI’s.
1. Patient Shark Tank: The brainchild of serial innovator Sarah Krug (who gets a 5 star rating personally). Products and innovations designed to help patients are pitched on-stage in a competition. The winner is chosen by…guess who? Patients! (Believe it or not, not every app and product developer thinks of end users first.) Patients have passed judgment on a total of nearly 200 innovations in the Patient Shark Tank so far.
2. The Society for Participatory Medicine (SPM): This is a community of active, engaged and smart patients, providers, payers and others, sharing tools, knowledge, and mutual responsibility for good health care. SPM showed renewed outreach, focus and presence at the Symposium. The aforementioned Sarah Krug, the bright and congenial Dr. Danny Sands, and charismatic crusader for patient engagement e-Patient Dave deBronkart (a PVI advisor) are all SPM banner-carriers (all get 5-star ratings as individuals).
3. Big White Wall: An online platform to connect you with people and resources when you’re depressed, anxious or need help coping. (Does that leave anyone out?) Founded by a woman whose friend took his own life after waiting too long to get an appointment with a mental health counselor. (Sharing the link with that certain someone could be just what they need right now.)
4. Dave Fuehrer: Dave was a 25-year-old competitive body-builder when he was struck with testicular cancer. He battled it twice and won, but when the going got tough, his wife packed up and left him. Alone, sick and “too young for cancer” (truth: a young adult is diagnosed every 8 minutes), he’s involved today in a number of innovations including “Instapeer”, a free mobile app offering instant, anonymous peer support for young adults with cancer.
5. Dana Lewis: Dana has Type 1 Diabetes. At night, she would sometimes sleep through the alarm on her device as it warned her that her glucose level was dangerously low. Fearing she’d literally die in her sleep, she asked the device manufacturer to make the alarm louder. They told her the alarm was loud enough. So she invented a louder alarm on her own, along with a “Do-It-Yourself Pancreas System” that can predict what her glucose levels will be, and is still “banging on doors trying to get the industry to use her technology for free”.
6. Michael Seres: Michael was a young man with Crohn’s disease and needed surgery to remove all but centimeters of his colon. Only a handful of people facing this condition had survived. Michael found a surgeon who could save him, and with whom he developed a lifelong trusted relationship. Michael also created a wireless sensor that messages his mobile phone when his colostomy bag is full (consider yourself lucky if you never need to find out how big a deal this is.) Michael has since founded a wireless medical device company to help others.
7. Annamarie Saarinen: Annamarie’s baby girl Eve was born beautiful and healthy looking. But just before she was discharged, her doctor found a heart murmur. Eve was actually in heart failure and needed life-saving surgery. Annamarie learned one in 3 babies with a heart problem is discharged from the hospital without being diagnosed. She set out to help save those babies, and found a way to bring pulse oximetry monitoring via an iPhone and sensor, easily and cheaply, to every baby in the US. And she’s working her way around the world.
8. The Silver Line (5++++ stars!) This session literally got me choked up (along with lots of others in the room). The Silver Line battles one of the most debilitating and tragic of human conditions: being elderly and alone. “Loneliness is a punishment for not dying sooner”, said one Silver Line user. The Silver Line offers “a free, confidential helpline providing information, friendship and advice to older people, open 24 hours a day, every day of the year.” In the first year of operation, as the website says, “the Silver Line Helpline received 275,000 calls; 53% of callers saying they had literally no-one else to speak to. We now receive almost 1000 calls every day from lonely and isolated older people. Over 1200 volunteer Silver Line Friends are making regular weekly friendship calls to older people.” I learned afterward one woman in a nursing home borrowed a friend’s cell phone, locked herself in the bathroom, and called the hot line to say the heat had been turned off in the building three days before, and the residents were cold and hungry. Local authorities did a surprise inspection and shut the place down. Patients using the Silver Line apparently are not only happier, but healthier, and the Silver Line has metrics to prove it. That makes it effective, affordable, compassionate medicine. Just think for a moment, in a world of medical marvels and new technologies, how powerful human connection is…and always will be.The only drawback: The Silver line in the UK, and not here in the U.S. Yet. Until then, you might consider doing what I did as I left the conference: call your mother.
What people, things or ideas for patients are rock stars to you?
