Past Issues

Editor's Feature

Issue 8 | October 2009

'E' is for Empowered

Are you an e-patient?

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. Online information, tools that organize health data (Google Health) and social networking tools (discussion forums, blogs, wikis, Facebook, Twitter, etc.) are letting us do this in ways never before possible.

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.

Gone are the days when the doctor was the only source of medical information and care. As cancer survivor and e-patient Dave deBronkart states, “ushering in the era of the participatory patient doesn’t mean that ‘doctor knows best’ has shifted to ‘patient knows best’. The new patient-doctor relationship is a collaborative partnership.”

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.


Want to be an empowered patient?

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. Here are a few online forums to check out: BCANS, breastcancer.org, Breast Cancer Now What?, Caring Voices, SharingStrength, Willow-Talk.
  • 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.

Related Discussions

SharingStrength’s forums and blogs are a good place to gather and participate in community knowledge. Read what others are saying. Join the conversation.

Discussion Forums > Open Forum (English) > just starting
“2 things you've decided to do are very wise. Joining [this]… group and having faith in the people who will look after you…”
Posted by Lillian on 27 Mar 2009
 read more

Editor's Blog > Had I only known: Share your tips
Women add to the community’s knowledge, sharing things that helped them be more prepared for a test or treatment.
 read more

Editor's Blog > Reverse mentorship: What can you teach your doctor?
What would you like your cancer care team to know that you learned online?
 read more



Featured Resources

Everyone has her own ‘patient personality’. These resources from the SharingStrength library can help guide you as you define your e-patient style.

Featured Organization

Caring Voices

CaringVoices.ca is an online community for cancer survivors. Supported by the Princess Margaret Hospital, CaringVoices.ca provides quality survivorship information and encourages survivors to find and chat with other cancer survivors across Canada. You can search the professionally-chosen resource library to get the information you need, pair up with another survivor using the people-matching tool and talk online with peers and professionals.

CancerVoices.ca’s expert-led chats allow members to talk in real time with health care professionals from Princess Margaret Hospital and invited guests from the cancer community. In a chat, everyone gathers online at the same time and responds to each others messages right away. You can post questions, discuss issues and chat with other members and experts. Check out the events calendar to find out more about the line-up of online chats on Caring Voices.ca.

In the discussion forums, you can post questions any time of day or night. Postings are reviewed and responded to by the CaringVoices.ca team and other CaringVoices.ca members like you.

Caring Voices is a safe and comfortable environment where you will receive helpful information. But more importantly, it is where you can share your concerns and learn from other survivors.

A caring voice is just a click away!


Colleen Young, Editor, SharingStrength | FortesEnsemble

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