When there is no therapy for a disease and very little is even known about the disease itself, it is often the parents or caregivers who lead the charge
When a rare disease project gets mainstream attention, it’s a big deal. Exposure to a wider audience can make a huge difference for patients, caregivers, and all other members of a given disease community. So we were excited to see that Life According to Sam, the documentary that made such an impression at the Sundance Film Festival, is now showing on HBO
Life According to Sam is a documentary film that tells the story of Sam Berns, a 16-year-old afflicted by progeria, an extremely rare condition that causes young people to prematurely experience the symptoms of old age. Read More
Needless to say, the journey to diagnosis is long and can take an emotional and financial toll
According to the Shire Rare Disease Impact Report, a survey of 1000 rare stakeholders, it takes, on average, more than seven years in the U.S. and more than five years in the UK for a patient with a rare disease to receive a proper diagnosis. Patients typically visit up to eight physicians (four primary care and four specialists) and receive two to three misdiagnoses before reaching a correct diagnosis.
Needless to say, the journey to diagnosis is long and can take an emotional and financial toll. Whether you’re just beginning your search, or have been seeking a diagnosis for many years, here are ten tips that can help you. Read More
There are cures for cancers buried in our data. Help us find them.
The medical research community is waking up to something that people with rare disorders have understood for a long time: We’re all in this together. Finding new treatments in time to save lives will require everyone’s efforts—not just doctors and nurses, not just researchers, not just pharmaceutical companies or insurance companies or venture capitalists.
Patients and their supporters have long understood the importance of working to raise funds for research and spreading awareness so that research will receive grant support. But what’s startlingly new is that now patients are playing a role in the research itself.
Cancer and the citizen scientist
“There are cures for cancers buried in our data. Help us find them.” That’s the invitation that Click to Cure, an initiative of Cancer Research UK, extends to citizen scientists. Participation is simple. After walking through a tutorial that explains the parts of a cell, you view examples of normal tissue cells, white blood cells and irregular cells and are then asked to estimate the number of irregular cell cores and judge the brightness of the yellow stain. By applying your human powers of observation to a job that computer algorithms can’t handle, you can help scientists work their way more quickly through the massive amount of data they have accumulated.
Last week the Center for Business Intelligence hosted its 9th Annual Forum on eMarketing for the Bio/Pharmaceutical Industry in Philadelphia, PA.
For me, the most powerful speaker was e-Patient Dave deBronkart, who shared his personal battle with Stage IV kidney cancer. Using what he learned online from other patients on ACOR, Dave was able to get into a clinical trial for Proleukin which saved his life. He told the room, “You will all be a patient one day.” Dave’s presence continued to be a reminder that pharma needs to focus on patients.
There were a variety of excellent speakers, but a few themes emerged. Read More
Having faced death, Dave asked himself what he’d do with his “free replay” in life.
If you haven’t heard of Dave deBronkart, popularly known as e-Patient Dave, you soon will. Diagnosed in 2007 with Stage IV, Grade 4 kidney cancer, Dave learned it had metastasized to both lungs, several bones, his tongue, and his median survival time was 24 weeks. Using the Internet, he learned everything he could, joined an expert patient group on ACOR, built a social network on CaringBridge and shared his online medical records with anyone who could help.
He beat the odds.
Having faced death, Dave asked himself what he’d do with his “free replay” in life. He became a healthcare blogger and joined the e-patient movement, where he’s one of the most outspoken advocates for patient engagement. He has been featured in US News & World Report, Time, Health Leaders and interviewed on CNN.com. Dave is also a Founding Co-Chair of the Society for Participatory Medicine and has a healthcare consulting practice.
e-Patient Dave recently spoke at CBI’s eMarketing event with Wendy White, Founder & President of Siren Interactive, and I took the opportunity to ask him 5 questions.
patients are becoming active participants and contributors to research
Patients, researchers, and pharmaceutical companies are natural allies. They all want the same thing – to find a cure. In the meantime, they want to reduce symptoms and challenges associated with the disease to give patients a full life.
In the past, research on these two fronts has been the province of scientists, with patients anxiously looking on, raising political and social awareness for their disorder in hopes of generating funding, or raising the funds themselves. But now, patients are becoming active participants and contributors to research - not by doing the work themselves, but by contributing collective data. Read More
The most disturbing and interesting fact is that nearly two in five of us (38%) are "unlikely to research" but "likely to change" our behavior.
I just read a really interesting post by Brian Klepper referencing Solucient’s HealthView Plus 2006 data, focused on “Quality-Driven Consumers,” people who are “likely to research ratings information on hospitals or doctors,” and likely to change providers if the one they originally preferred received a low rating. He walks through the statistics outlining how many people actually do research and how that effects their behavior. The most disturbing and interesting fact is that nearly two in five of us (38%) are “unlikely to research” but “likely to change” our behavior. Is this the power of web 2.o? That few people actually do deep research to verify facts, and more people take a stranger’s word if they say they’ve been through the same experience? Or just change their health care based on no data?
Of course, this also affects pharma marketers and their websites. For big pharma I guess this is not a surprise, because the advertising itself can evoke an emotional response and get someone to switch their medication. For biopharma, where we are more likely to be dealing with patient populations with a possibly life threating chronic disease, there is a financial and moral imperative toward more transparency and decision-support which, if we do it right, will ultimately drive changes in healthcare.