In January 2007, Dave deBronkart was diagnosed with a rare kidney cancer and given only 24 weeks to live. His doctor, Danny Sands, prescribed ACOR, an online community for people with cancer. Yes, an online community! From that community of peers, Dave found information that couldn’t be found anywhere else on credible information websites. He was told about a treatment that sometimes works. Community members were quick to point out that the treatment often doesn’t work and that’s why most hospitals don’t offer it and won’t tell you about it. He opted to try the treatment and sought out a cancer centre where he could get it. His last treatment was July 23, 2007, and by September it was clear he was in remission.
For many, Dave is the epitome of an
e-patient. While you may be quick to assume e equals electronic, it doesn’t. The e-patient is equipped, enabled, empowered and engaged in their health and healthcare decisions. They have moved mountains via the social web for their own health and the health of others1.
Thanks to the social web people from around the world can come together to share information and support, including information about illness, managing disease, end of life, health and wellness. Technology can organize our collective knowledge and make this user-generated information useful and accessible to many. We are building networks online that we tap into when we need help or advice and to share our knowledge2.
The Social Web for Participatory Health
Providers who recognize the value of collective health knowledge are pioneering participatory medicine and accepting patients and caregivers as respected and equal partners in their care.
Understanding the potential of peer-to-peer health has led to social health innovation in patient-provider communication and patient self-care.
Healthcare providers remain the experts in disease, but recognize that we are the experts in ourselves. It is the social web that has increased our ability to quickly and easily get information and support to help us manage our care, our health and our living as it applies to our individual situation. That means we can share not only with people like us, but also collaborate with people who may know more than we do and help inform people who haven’t been there yet.
Here are a few online communities to check out:
CancerConnection.ca - the Canadian Cancer Society's trusted online community
VirtualHospice.ca – a welcoming community of people talking and sharing about living with a life-limiting illness, caring, loss and grief.
CancerFightClub.com – on online community for young adults with cancer
Are you looking for a specific type of online community?
Let us know.