Friday, March 19, 2010

‘E’ is for Empowered

Are you an E-patient?
Sharing Strength editor Colleen Young writes, if so, you are part of a health care revolution!

Do you look for health information on the Internet and discuss what you find with your doctor? Have you ever read a posting on a discussion forum and thought, “Yeah, I have that side effect too. I’m going to talk to my doctor about it”? Then you are an e-patient—equipped, enabled, empowered and engaged in your health and your health-care decisions.

According to Wikipedia, “e-Patients are health consumers who use the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research: ‘better health information and services, and different (but not always better) relationships with their doctors.’”
Patients no longer want to receive health care passively. We want access to information and to our medical records, and we want to connect and collaborate with our peers.

And, health-care providers are beginning to understand that patient knowledge counts. The authors of the paper e-Patients: How they can help us heal healthcare acknowledged that health-care providers
  • should recognize that e-patients are valuable contributors to health care.
  • have overestimated the hazards of imperfect online health information. Patients are capable of gathering quality health information online.
  • have underestimated patients’ ability to provide useful online resources.
  • can no longer go it alone. The most effective way to improve health care is to make it more collaborative.
Collective knowledge and experience shared online is valuable. Health-care providers need to embrace the wisdom of community knowledge. Together we can build confidence in participatory medicine—a cooperative model of health care that encourages and expects the active involvement of patients, caregivers and health-care providers.

You can take an active role in your cancer care. Here are a few tips to get you started.
  • Gather information.
    When using the Internet, make sure the information is accurate, objective and trustworthy. SharingStrength’s Resource Library of credible breast cancer resources is a good place to start.
  • Tap into community knowledge.
    Breast cancer support groups and online communities are a great place to ask questions and get answers. 
  • Keep track of your health record.
    Maintaining an electronic or hard copy of your own health record can be useful when talking to your cancer care team and coordinating your care.
  • Talk to your health-care provider.
    Tell your doctor that you want to take an active role in your care. Ask questions. Recommend websites to your cancer care team

1 comment:

  1. I noted the part about this approach giving you a different but not necessarily better relationship with your doctor. I've found that some doctors seem to feel threatened by this. It doesn't mean I'm going to stop doing it, but I've found that can be a barrier to having your research and ideas help inform care.