Online patient communities and patient forums have sprouted up all across the web, focusing on diseases and conditions ranging from insomnia, to epilepsy, to cancer, and joint replacement surgery. For the most part, these forums serve as a reliable source of medical information and the benefits of them are becoming well documented.
One community in particular, patients planning for
knee replacement surgery, is showing dramatic growth and popularity.
Pre-operative knee 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
knee replacement patients benefit enormously from the support they
receive in forums like the one at BoneSmart.org. Josephine Fox, chief
moderator at the BoneSmart.org knee 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,
she and another moderator, who have both undergone knee replacement
surgeries themselves, 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 "number of problems that seem to
be represented" by user posts.
The goal of
these forums is to foster communication between persons who may need
knee replacement surgery and those who have had one or more of their
own joints 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 knee 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, rehab and recovery. To someone who is just
beginning to investigate knee 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: "About 10% of the
members' posts spontaneously mentioned that they had been unable to get
the medical information that they needed from their own clinicians.
When we surveyed members directly, more than 30% said that they had
been unable to obtain all the medical information they would have liked
from their physicians." 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 knee 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."
About BoneSmart.org
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.
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