A Reader and Author Respond to "ePatients: Engaging Patients in Their Own Care"

To the Editor,

Thank you for Dr. Sands' recent editorial on ePatients. Having been in cancer treatment for over 6 years, I consider myself an experienced patient and an ePatient. To Dr. Sands' list of what patients want,^[1] I would add the following.

Patients would like to know that their experiences constitute another valuable type of information, and that there is a way to make this part of their ongoing conversation with doctors and other caregivers. One thing that the Internet has provided is a platform for thriving online patient communities. These contain a trove of vital information about side effects, treatment options, and more. This information in no way substitutes for the information that patients receive from their physicians, and I believe the vast majority of ePatients readily understand this. It does, however, complement other information sources, whether they are package inserts, medical portals, or information obtained at the point of care. I believe that this information should be embraced as part of the ePatient paradigm, and that it will prove to be one of the most powerful ways we can engage patients in their own care.

Judith Feder
New York, NY
jfeder@brodeur.com

Reference

1. Sands DZ. ePatients: engaging patients in their own care. Medscape J Med. 2008;10:19. Available at: https://www.medscape.com/viewarticle/568662 Accessed February 18, 2008.

Author's Reply:

The enforced brevity of my video editorial did not permit me to do justice to this topic. Online patient communities are a valuable resource for ePatients on their journey through illness and wellness.

Whereas traditional support groups depend on participants congregating in a common room to enable their interactions, the Internet obviates the need for physical proximity and can still provide a forum for patients (some clinicians) to exchange comfort and support, usually through simple messaging. They can also share ideas and generate hypotheses, some of which might lead to actual therapeutic breakthroughs.^[1]

These groups are so powerful as healing entities that one of my patients, recently suffering through the diagnosis and treatment of metastatic cancer, remarked to me on the anniversary of his diagnosis that his online support community has literally saved his life, making his daily struggle more manageable.

The power of these communities cannot be overstated.

Daniel Z. Sands, MD, MPH
dzsands@cisco.com

Reference

1. Landro L. The growing clout of online patient groups. Wall Street Journal. June 13, 2007. Available at: https://www.jmir.org/cms/view/in_the_news Accessed February 18, 2008.

Medscape J Med. 2008;10(2):46 © 2008  Medscape

Cite this: A Reader and Author Respond to "ePatients: Engaging Patients in Their Own Care" - Medscape - Feb 24, 2008.