As 2009 comes to a close, and we review the last 10 years of advances in patient empowerment activities, one thing becomes clear -- we patients are just getting started in our efforts to become informed participants in our care, with resources that never existed before the new millennium began, new technology that can provide us with instant, comprehensive information - or even make miracles happen - and problems with people and germs that cause safety problems most of us never anticipated.
Here is a list of the good, the bad and the ugly that have defined this new world of informed, technology-based and dangerous (yes, dangerous) new world of health and medical care. Each development has been transformative, creating both the need and ability for us patients to take more responsibility for decision-making for our health and medical care.
The Decade's Good Developments that Have Benefited Patients
The Human Genome Project was completed in 2003. More than 20,000 human genes were identified and mapped, setting the stage for a variety of advances in medical science including forensics and pharmaceuticals. Empowered patients are interested in this project's potential for development of personalized medicine, making medical care of the future specific to one individual's body. Mind-boggling.
The Internet is perhaps the most important tool for empowered patients. Its potential and use were multiplied exponentially during the past decade. For the first time in history, patients can access the same information their medical providers can access, and can find explanations for everything from confusing concepts to frightening diagnoses, to miraculous surgeries and other treatments.
Use of the Internet for researching health and medical information, coupled with social networking -- the use of Facebook, Twitter, online support groups, and other vehicles have fed an entirely new concept within medical science; that is, the wisdom of crowds. Websites such as ACOR.org and PatientsLikeMe.com provide a vehicle for patients who share a diagnosis to talk to each other, learning about their diagnoses, symptoms and treatment possibilities. This new sharing, when it is accomplished among professionals and patients together is called Participatory Medicine.
The tools of technology have advanced as well. Medical records are being kept electronically, a new development over these 10 years. Patients and professionals alike make appointments, access their accounts or look up medical information using not just personal computers, but cell phones, too. The use of widgets, a piece of software that did not exist at the turn of the millennium, helps patients do everything from find the pricing for a newly prescribed drug, to making appointments to see their doctors, to donating to the disease charity of choice.
New treatments, and new spins on old substances have developed. From potential cures using stem cells, chemicals or radioactive drugs, to new legislation allowing for the use of marijuana for medical symptom-relieving purposes, to a strong resurgence in the regard for complementary and alternative medicines, patients are making choices today they could not have (legally) made just a decade ago.
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A Decade of Patient Empowerment 2000 - 2009
