The Power of Patient Community: Educate, Encourage, Empower

Recently, I was invited to travel to HealthCentral’s New York office to participate in an on-camera interview as part of Johnson & Johnson’s global video campaign.  Joining me were three other Patient Experts from different HealthCentral sites. I can't recall verbatim everything we talked about, but here are some questions and thoughts I had discussed that I'd like to share with you:

1. How important is it for patients and/or caregivers to become active participants in their health care?

It is imperative that we, as patients, take an active role in our own health care, which includes educating ourselves, working with our medical providers in making appropriate decisions, and following through with treatment choices.  After all, it is your own body, mind, and spirit that is at stake as well as your current and future health. 

2. How has the Internet served to empower patients when it comes to managing their health?

The power of the internet lies in the immediate access to information that provides an individual with a wide variety of opinions and facts when it comes to managing their health or illness.  Whether from the National Institutes of Health, the Arthritis Foundation, the Johns Hopkins Arthritis Center, the National Multiple Sclerosis Society, or patient blogs and online health communities, reliable information and personal support ultimately empower patients in making their own choices.

3. What is it that motivates you to join the conversation with online health seekers?

Honestly, I derive a great deal of personal satisfaction from helping others find answers to their questions and concerns.  I enjoy offering support and the reassurance that “you are not alone” and if by sharing a bit of my personal experiences serves to help someone else, even better.  I gain so much from the camaraderie of the patient blogger community, that I find support is returned to me in bushels.

When I receive feedback from readers saying -- “Why didn’t I know that?” or “Why didn’t my doctor/nurse tell me that in the first place?” - followed by - “You're suggestions really worked!  Thank you” -- I know that I’ve helped someone in making life with their chronic illness a little bit easier.  That makes my day.

4. What has been the most inspiring community experience you have had to date?

It is difficult to pick a “most inspiring” experience, but just last week I had an extensive exchange with a woman who is new to self-injections.  Her initial concern had to do with the burning, redness and post-injection lumps she was getting -- all common site reactions.  I gave her some words of support and linked to a previous post on the topic which includes a number of suggestions to lessen post-injection pain and site reactions. 

Over the course of three days, she had further questions and concerns as she tried the various tips.  I continued to respond to her questions and ultimately she began to avoid some discomfort while becoming more confident in her experience.  She clearly expressed her appreciation for my patience and continued words of comfort and advice.  I find this type of exchange to be inspiring and rewarding.