Today, Feb. 29, is a rare day on the calendar, and fittingly, it is officially Rare Disease Day around the world.
There are thousands of rare diseases out there — between 5,000 and 7,000, according to the European Organisation for Rare Diseases. And though each disease is rare, put them all together and they affect 6-8% of the population, the European figures suggest. About half the diseases are inborn and half come later in life, from infections and other causes.
Surely one of the most insidious diseases to strike later in life is encephalitis, a potentially devastating brain inflammation known colloquially in its community of patients and caregivers as “E.” I’ve heard mainly about encephalitis as a doctor’s nightmare, because it can be both deadly and hard to diagnose, and as a staple of summer news: Every year brings a report or two of a Massachusetts resident stricken by the Eastern Equine Encephalitis carried by mosquitoes.
But with the release of a new survey of some 250 patients with encephalitis and their family members, I now have pictures in my mind to go with the letter E:
- An encephalitis patient who tries to light his cigarette with this thumb, forgetting that he needs a lighter to flick.
- high-flying, 38-year-old senior vice president of a global company who delivers a presentation in southeast Asia and just two hours later suddenly finds herself unable to walk, to speak, to do anything but lie shivering in a paralyzing fog.
- “Invisible residuals:” You may seem fully recovered to others but still suffer from lingering problems with memory, relationships, problem-solving, multi-tasking. The report drew its title from this survivor’s quote: “I look normal and act normal but it’s a very hard thing to have, as people don’t know of it…I tell friends and family but they seem to be thinking that it’s two years now and I should be better, which is of course what I feel, so it makes it very hard, but as my family keeps telling me, I am still here, just not quite the me I remember.”
Patients Like Me founders (l-r): Jeff Cole, Ben Heywood, Jamie Heywood
WBUR’s Martha Bebinger reports this morning:
A Cambridge-based website that brings patients together to talk about their disease, treatments and medications is expanding. The site, “PatientsLikeMe” has been limited to people coping with one of 22 conditions. Starting today, it’s open to patients who want to discuss any health issue, says co-founder Ben Heywood:
“Patients are really suffering, in many cases, from multiple conditions. And I think this will allow them to add and share those conditions and really target and find more specifically a patient like them.”
Patient feedback on the site is used in medical research and by pharmaceuticals firms that help fund the project.
PatientsLikeMe is a Web 2.0 pioneer, an early demonstrator of just how powerfully the Internet can create online communities of people with shared interests. It began with a Newton family’s tragedy — a young man’s fatal diagnosis of Lou Gehrig’s disease — and now continues to explore new territory in Internet uses for health. As they tell it:
PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.
The Heywoods’ story is also portrayed in the film “So Much So Fast” and in the book “His Brother’s Keeper” by the excellent science writer Jonathan Weiner. PatientsLikeMe has also been featured in The New York Times, including one story that pointed out that such sites raise issues about the “e-patient” phenomenon. Back to today’s news. From the PatientsLikeMe release: Continue reading
By WBUR’s Martha Bebinger
(scheduled to air today on All Things Considered)
The child of Chinese immigrants who is transforming care for the elderly, a man inspired by the death of his brother and a woman whose leadership is described as a mix of acid and whipped cream are among those honored this year by the New England Healthcare Institute.
The awards showcase the work of these five men and women on improved patient care. We asked these health care innovators how what they’ve learned about improving care might translate to controlling health care costs.
Let’s begin with the petite hospital executive who blends acid and whipped cream in running Denver Health, a national model in health care for the uninsured. CEO Patricia Gabow looks to other industry leaders: Fed Ex, the Ritz Carlton and Toyota and adapts their approach to her goal, improving patient care. Using Toyota’s LEAN model to analyze more than 300 procedures at Denver Health, Dr. Gabow says she found that about 60% of what has happening was waste.
“By taking out waste you improve quality and lower costs and make it (health care) more patient friendly,” says Gabow. “Who wants to sit in a waiting room or get a test you didn’t need? But unfortunately, in health care, a lot of what we think is waste is someone else’s income and that’s why it’s very difficult to change this system.”
Gabow says Denver Health is $66 million better off in savings and efficiencies since adopting the Toyota model. Now Gabow says she, like some hospitals in Massachusetts, is ready to test new ways of getting paid for health care. She expects to try global payments, where doctors and hospitals work under a budget for patients instead of getting paid for each office visit, test and procedure — what’s known as fee for service.
“You have to get rid of fee for service if you want to improve value and lower cost” says Gabow. “It doesn’t take a rocket scientist to say, if you pay people for doing more that they’re going to do more, this is human behavior.”