Have you ever wondered how various disease conditions are managed in different regions of the world? From prevalence rate to the treatment regimens used, the standards by which each disease state is tackled and viewed upon can vary quite significantly from region to region.
Surfacing this sort of information can take some time, unless you are currently living within the respective region in question; what is the most readily used medication to treat hypertension in Scotland?
That’s where the power of the crowd can help. Who better to help surface this sort of information than the people who are on the ground level, locally, within that region? One could envision a regional standards of care knowledge map to look similar to the Dartmouth Atlas of Health Care, but on a global scale. More…
People of all ages love Lego toys. Some play with them just for the fun of it, while others (myself included) create their own imaginative concepts. For Regina Holliday, founder of The Walking Gallery, legos are another artistic way to cast vision.
Jerry Matczak, Dean Sellis, and I had the opportunity to attend the Partnership With Patients Summit in Kansas City, Missouri the weekend of September 23rd where I found multiple cocktail tables populated by little Lego figures portraying The Walking Gallery. Close inspection revealed a miniature version of one of Regina’s painted stories applied to the back of each Lego character.
With painted jackets and coats or Lego dioramas, Regina Holliday continues to inspire others to take action on patients’ rights to their own health information. The Summit is about patients. I had the opportunity to listen in on various issues in healthcare – not as a pharmacist – but from the view of a patient.
Ben Harris is a medical physicist from Indiana and an example of a patient conducting a Do It Yourself (DIY) study. Diagnosed in January of 2011 with ALS (amyotropic lateral sclerosis, also known as Lou Gehrig’s disease), Harris became both the clinical researcher and the single-patient subject in his search for effective treatment of the disease.
It was six months after his diagnosis that Harris took part in a sponsored clinical trial for a new experimental drug. The treatment gave him some relief from his ALS symptoms and hope that the progression of the disease could be inhibited. Other patients had similar results.
“Accounts similar to Ben’s began to emerge in the chat-rooms,” says Harris’ brother, who is documenting the events surrounding the ALS diagnosis and the pursuit of this new treatment. “There’s one small problem: the FDA’s process would take between 5 and 7 years before [this new drug] would be approved and made available. My brother could be dead by then.” In clinical research, time can mean everything, particularly to patients.
Harris began an intensive Internet search for information about the compound used in the trial. More…