Online patient communities and patient forums have sprouted up all across the web, focusing on conditions ranging from insomnia to cancer. Our own hip replacement forums have proven to be invaluable sources of support and information to thousands of members and millions of visitors — and the benefits of such online communities are becoming even clearer with time.
Jo Fox, orthopaedic nurse of over fifty years and lead administrator of the BoneSmart® forum, says that post-op hip replacement patients often express worries about accidents, complications, and failures. The support they receive in the forums allows them to cope with the emotional side of undergoing surgery. Emotional issues can range from depression to poor pain control to difficulty with the activities of daily life such as bathing, dressing, and mobility.
Connect
Using forums as a place to discuss issues such as swelling, pain, and trouble sleeping helps members to feel less alone or isolated after their surgery.
“So… Saturday I noticed a lot more pain and some swelling in the area of the incision! It started like that be progressed quickly. The pain got a lot worse as did the swelling! Now it feels like there is a water balloon under the skin there. It’s hot to the touch! It felt much like a new clot. So, I spent four hours in the ER. It’s not a new clot, but they don’t know what it is and told me to talk to my OS today! That’s the plan, but no sleep last night!! Frustrated and needed to vent!!” (by tahoe1009)
The goal of online communities for post-op hip replacement patients is to foster communication between those who have recently undergone surgery and those who have had one or more surgeries. Experienced users are encouraged to help “mentor” new patients, and provide a nurturing environment of support and knowledge. Obtaining specific answers to questions like, “Why are my legs so swollen?” and “Shouldn’t I be further on at X weeks?” provides patients with an immediate sense of comfort and ease. In addition, e-patients are properly informed about rehab, recovery, and infection hazards. BoneSmart® forum administrators, who have special training in these areas, pass along reliable and practical information in response.
Learn
Post-operative hip replacement patients learn how to use medical home-equipment like ice machines and CPM’s (Controlled Passive Movement). Furthermore, physical therapy can be confusing to patients who are just beginning the stages of rehabilitation. Moderators and experienced members of the forum offer suggestions on how to navigate this crucial period. Members who have gone through physical therapy for a total hip replacement are often more than willing to share their experience.
While online communities are by no means replacements for doctors or their medical expertise, by sharing their experiences patients can provide the types of assistance to each other than physician might not be able to. Tom Ferguson, author of the article, “What I’ve learned from E-Patients,” writes: “I have also learned that an online group . . . is not only much smarter than any single patient, but is also smarter, or at least more comprehensive, than many physicians—even many medical specialists.”
Both the main BoneSmart hip forum areas (for patients preparing for hip replacement surgery, and for patients recovering from hip replacement surgery) have shown dramatic growth since the forum launched in 2003. Pre- and post-operative patients have created a social network in the online forum where members discuss their concerns about rehab and physical therapy and ask specific questions from moderators and experienced e-patients.
