The patient-provider relationship is changing.
Patients are not just using the Internet to obtain information but also to make health decisions. Indeed, some perceive the health information they find online to be very informative. For example, in one study published by the Journal of General Internal Medicine, 60% of participants said the Internet information was the “same as” or “better than” the healthcare providers’ information.
In addition to gaining knowledge about health-related issues and assisting in decision-making, patients also use the Internet to interpret personal symptoms, evaluate healthcare providers, reduce uncertainty, and actively participate in their own health interactions. What is most fascinating to me is this last point — seeking health information online encourages patients to actively participate or be empowered in their own health experiences.
Two weeks I wrote a blog post entitled, “How to be an Empowered Patient.” For this week, I would like to extend that conversation by introducing the term ePatient. An ePatient is an individual with an illness or health issue that seeks electronic health information in order to make informed decisions.
Thus, a patient’s ability to access health information online is empowering — decreasing the knowledge gap between providers and patients and enabling patients to take a more active role in their health interactions.
Herein lies the key point: ePatients are empowered patients.
There are many ways ePatients are empowered patients. To help explain the ways in which we can be empowered ePatients, I turned to two individuals who, in my opinion, are great models and leaders in this area. Specifically, I asked them to define what it means to be an empowered ePatient. Here are their thoughts.
Andrea Downing is a BRCActivist. When she was 25 years old, she was told by a genetic counselor that she has up to an 87% lifetime risk of having breast cancer and up to a 60% lifetime risk of ovarian cancer when she tested positive for a BRCA1 deleterious gene mutation. She started a blog called Brave Bosom as a way to challenge her own understanding of her mutation, and to learn about how BRCA fits into a bigger picture. You can follow Andrea on Twitter Brave Bosom.
ePatients are research advocates and health data activists. ePatients understand the power of social networks, patient community culture, and the power of community data to create better options. We are laypeople who work to directly change the culture of research and healthcare.
Christina Lizaso is an ovarian cancer and gynecologic cancer advocate. Her strong family history of cancer and her passion for community building led her to co-found and co-moderate #gyncsm (GYN Cancer Social Media) found at gyncsm.blogspot.com. You can follow #gyncsm on Twitter @gyncsm.
Being an ePatient to me means taking responsibility for my role in ensuring I receive the best care for me and in doing what I can to be healthy. Also, for me, it means working to make the healthcare system a smoother and easier place for everyone to do this.
Although there are several things that stand out to me in these two responses, the following three points highlight my key take-away messages.
- Being an ePatient means you are active participant in your own health and healthcare.
- Being an ePatient means using technology and social media as a way to advocate for yourself and others.
- Being an ePatient means using your own personal health experiences to help enact change in the healthcare system at large.
So let’s challenge ourselves and the healthcare system by being empowered ePatients. Let’s actively participate inside and outside our medical encounters.
How can you leave feedback for me?
You can respond to this blog post, or you can also email me at my university email address: firstname.lastname@example.org. Finally, if you like what you are reading, please share my posts via social media including Twitter and Facebook. You can follow me on Twitter at @marleahdeank.
Additional Sources on the topic of Online Health Information Seeking:
Brave Bosom http://www.bravebosom.com/
GYN Cancer Social Media http://gyncsm.blogspot.com/
Sciamanna, C. N., Clark, M. A., Houston, T. K., & Diaz, J. A. (2002). Unmet needs of primary care patients in using the Internet for health-related activities. Journal of Medical Internet Research, 4(3), 28–41.
Diaz, J. A., Griffith, R. A., Ng, J. J., Reinert, S. E., Friedmann, P. D., & Moulton, A. W. (2002). Patients’ use of the Internet for medical information. Journal of General Internal Medicine, 17(3), 180–185.
Sommerhalder, K., Abraham, A., Zufferey, M. C., Barth, J., & Abel, T. (2009). Internet information and medical consultations: Experiences from patients’ and physicians’ perspectives. Patient Education and Counseling, 77(2), 266–271.
Mathieu, E. (2010). The Internet and medical decision making: Can it replace the role of health care providers? Medical Decision Making, 30, 14S-16S.