Online patient communities and patient forums have sprouted up all across the web, focusing on diseases and conditions ranging from total hip surgery, to obesity, to heart surgery and cancer. For the most part, these forums serve as a reliable source of medical information and the benefits of them are becoming clearer with time. One community in particular, patients planning for hip replacement surgery, is showing dramatic growth and popularity. Pre-operative hip replacement patients create a social network in the online forums where members can discuss their concerns about upcoming surgeries and ask specific questions from moderators and experienced e-patients.
Tom Ferguson and Dan Hoch’s article, “What I’ve learned from E-Patients,” breaks down the benefits of e-patient forums into three useful categories: source of support, source of information, and source of collective knowledge and experience. In terms of support, the authors write, “The constant outpouring of sympathy and support that we observed in interactions among community members surpassed anything a patient might conceivably expect to receive at a doctor's office.”
Pre-operative hip replacement patients benefit enormously from the support they are given in forums. Josephine Fox, a moderator at the BoneSmart.org hip replacement forums and nurse of over fifty years, says that encouragement and reassurance from the peer group increases confidence and provides a sense of stability. Moreover, the moderators act as specialized sources of support and information. A sticky note posted at the top of the forums tells patients not to be discouraged by the “disproportionate number of problems that seem to be represented here”.
The goal of these forums is to foster communication between persons who may need hip replacement surgery and those who have had one or more of their own hips replaced. Experienced users are encouraged to help "mentor" new patients, and provide a nurturing environment of support and knowledge.
Online forums are also useful as sources of information. Pre-operative hip replacement patients ask specific questions like, “Is it better for me to wait before getting a surgery?” and “How active will I be after the surgery?” Patients receive advice on choosing a surgeon, and are properly informed about surgical procedures. To someone who is just beginning to investigate hip replacement surgery, the various approaches and procedures can be overwhelming. This is where the moderator's specialized knowledge and the community's general knowledge assist the pre-operative patient.
The authors of “What I’ve learned from E-Patients” write: “In the remaining 70% of the postings, group members provided each other with what amounted to a crash course in their shared disease, discussing topics such as the anatomy, physiology, and natural history of the disorder; treatment options and management guidelines for each form of treatment; and treatment side effects, medical self-management, the day-to-day practicalities of living with the disease, and the effects of their condition on family and friends.” From these findings, the authors reason that online patient forums are serving a real need for medical information.
But collective knowledge and experience in patient communities serve as perhaps the greatest benefit. Josephine Fox writes that worries about longevity of implants and incidence of complications and failures are assuaged in the hip replacement forums. By sharing their experiences, patients can provide more assistance to each other than even a physician might be able to. Tom Ferguson notes, “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.”
BoneSmart.org is a National Public-Awareness Campaign for Candidates of Hip Replacement Surgery and Knee Replacement Surgery. The BoneSmart® National Consumer Awareness Campaign’s mission is to raise patient awareness of the options available to persons diagnosed as a hip replacement or knee replacement candidates by providing an Internet portal for awareness of the latest advances in joint replacement materials, their longevity and suitability for various applications. With this information the potential patient may be better informed when discussing options with his or her surgeon.
By Jeremy Reither
All rights reserved. Any reproducing of this article must have the author name and all the links intact.