Online Support for Patients with a Chronic Illness
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.
5. How do you approach educating a confused or ill-informed consumer? Is this a sensitive matter? How do you handle the exchange and what is their reaction to your post/comment?
Having a background in education helps me to clarify confusing or contradictory information. Although I would never tell someone that they “have it all wrong,” I do offer links to recognized sources to back up my information. If it is a sensitive topic, I have found a matter-of-fact approach is most effective and the reaction I receive has always been positive.
6. What do you hope your readers get from your Expert Posts?
My goal in writing the Expert Posts is to provide other patients with information regarding the disease, health care, and general well-being, all in an easy to understand manner. I hope readers understand that they are not alone and that there are others who “get it.” We may have different symptoms, although we have the same disease, and may choose different paths of treatment, but ultimately we are in this together.
Also, when a reader comments - “I didn’t know that [problem or condition] could be related to my [disease]! I will definitely talk to my doctor about that during my next visit.” - I know that I’ve done some good.
7. There are some who say that responsible direct-to-consumer Internet advertising is a good thing in that it targets the message only to people who have--or are seeking information regarding--a medical condition and educates them about their options. There are others who say that ALL DTC advertising is a bad thing, as it creates unnecessary demand for medications and procedures. Where do you weigh in on that debate?
I will openly admit that I find very little value in direct-to-consumer advertising aired on TV. I find the commercials less than genuine and rather annoying, especially since they do not apply to me directly. Each time I view a commercial for Orencia, Humira, or Enbrel, I can’t help but wonder just how much the expensive advertising campaign increases the cost of these rheumatoid arthritis treatments.
However, I do appreciate having access to detailed information regarding available and trial medications, devices, and therapies related to my health conditions. My recommendation to the drug manufacturers is to take that information to where the patients are, allow open access to treatment data and journal articles, and be fully transparent.
I would love to see the day when there are more cooperative efforts between companies and less competition in the advertising space. More information, less spin. I think that as a society we are fatigued from wading through the spin to get to the basic information. Just my opinion.
8. HealthCentral takes a patient-centric approach to medical information. How helpful to a person seeking to manage their condition online is connecting with expert patients who know first-hand what the person is going through?
There is little substitute for the type of assistance one patient can offer to another. At HealthCentral, we have a two-way conversation going on, very much an active Health 2.0 community geared to patient experience and needs. Connecting with other patients, whether an official Expert Patient or other members of the community, serves to alleviate fears, provide information, and offer support, encouragement and the knowledge that “you are not alone.”
Inform, educate, encourage, empower - That’s what I try to do.
Now it’s your turn. How would you answer any one of the above questions? What do you feel are the major benefits of the internet and online health communities? Do you leave HealthCentral feeling empowered and better able to manage your rheumatoid arthritis?