An e-patient (also known as Internet patient, or Internet-savvy patient) is a health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions.
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.”
As use of the term e-Patient has evolved, there has been less emphasis on Internet access and technology, and a contentio that the “e” in “e-patient” stands for “empowered, engaged, equipped, enabled.” – Wikipedia web definition
I am always very honored to write for others, and The Myeloma Beacon has always been very encouraging and supportive of articles that I have submitted to them. They have a lovely staff there that I have enjoyed working with on the few articles I have submitted.
I recently sent them one that was published today (see article here) about empowering the E-Patient. I loved their idea of the Dear Doctor headline! It is indeed an open letter if you will to those in the medical profession, and particularly those who tackle the treatment and research of Multiple Myeloma.
It all started with one of my visits to a new veterinarian when Kip was nearing his last days. As she was throwing out potential ailments that might be the cause of his distress, she grabbed a piece of paper and wrote them down saying, “Here. I know when you get home you’ll want to look this up on the internet.” I was appreciative and struck by the open willingness of her manner to give me what I needed to do just that. There was nothing condescending or irritating in her tone, just matter of fact and let me help you get started. I thought, “Wow!” Vets are truly always ahead of the human medical professions. Indeed, testing of many things that will be used on us are done in dogs and other animals. Heart surgery, grafs, hyperbaric oxygen treatments, etc. What would happen if in our consultations with our doctors they provided us with websites that they felt had good, up to date information for their patients, instead of making snide comments about WebMD and the Internet?
Indeed, I have been heartened by all the new medical websites available now with patient videos, bloggers, information, literature, membership, chat rooms, support groups. Its truly and explosion and one that has been of great value to me personally. I’ve been honored to help some of them get off the ground and heartened by their efforts to bring good information to the world wide web.
When Dave was first diagnosed and we were in the throws of our move, the last thing I had time for was to find a cancer support group meeting to attend! When I did, it was at least a 2 hour drive and meets once a month. I could never get it together to go, though I did try. As I would travel with Dave to some of his first business meetings and conferences I would find a place to sit and get on the internet with my trusty laptop and surf the net. I found my very first online support group in England. I tentatively ventured into their chat room and it was there that I made some amazing and wonderful new friends. Some had Myeloma and most had an array of other cancers. They are still my friends now and we have connected on FB, vowed to visit one another, and held each other’s hands in those dark times we sometimes find ourselves in. It’s not what will work for everyone, and surely a personal meeting has a whole different feel to it. But the Internet, for me, was a godsend. It was open 24/7, there for me whenever I felt a need, which sometimes was at two in the morning when I was plagued with those nagging worries. Not too mention how well I was able to utilize it with Caring Bridge to keep all of our friends and family up to date on what was going on!
Thank you Karen. You always humble me with your kindness and courage. Hugs friend!
lori – YOU were my lifeline! i will never forget the day i found your blog, my eyes scanning every word, my heart overflowing with relief, and my eyes overflowing with tears because i no longer felt alone. i have read every word you’ve written about dave’s and your story, and been enlightened, inspired and encouraged to keep informed by continuing to read and digest what you present from other resources as well. i hope you continue to feel fullfilled and take great pride in what you are accomplishing. i can never thank you enough. warm hugs and XO for being here for so many of us, for the encouragement to reach out to the internet to help inform and empower, and for the generosity you extend in sharing your wealth of experience.