One Hundred Injured Patients
Linked to Each Other
facebook page for injured patients:
http://tiny.cc/BENEd
On the one hand, it's the beginning of a registry of injured
patients. On the other hand, it is a way to become visible.
The registry of Cystic Fibrosis patients has enabled that
group of patients to identify what worked best for them and contributed to the
doubling of their survival rate. We need to establish patients with iatrogenic
injuries as a care group to identify what has worked best for other members of
that group.
People with iatrogenic injuries find they cannot treatment
for the injuries because no one in medicine will create a diagnosis that could hurt the
reputation of someone else in medicine. Other injured patients turn out to be
the only ones who will help chart a path through the aftermath of an adverse
event. Diverse injuries are united into one care group by such commonalities.
How did other injured patients get treatment? How did they get their primary
care physician to release their records? How did they get a note about the
existence of their iatrogenic injuries into the record?
Everyone gets their information from providers
so no one knows we are here.
The injured patient who wrote to me most recently said, "It
has been a tremendous shock to discover that there are no safeguards for
patients . . . you cannot even sue. There is no agency, nothing. The system just
smears your name and leaves you for dead." For two years she had been alone
battling to get help, even creating her own site about it, before a search
happened to pull up this site and she discovered that there are other people just
like her.
We need to link to each other to make it so that her first
search will connect her with someone. In order to make injured patients more
visible, in order to overcome being viewed as rare loners, in order to help
newly injured patients find help and information, we propose creating mutual
links between injured patients - fifty would be enough to cause search engines
to deliver people to us. More will make it possible to find something with a
search other
than the party line written by providers when searching on terms like
"iatrogenic injury."
Wherever You Are
On FaceBook, Websites, Blogs, You Tube and wherever else you
have a presence on the Internet - anyplace with which mutual links can be
established, link to us and let the rest of us link to you. Links
like that draw traffic. That creates an awareness of patients with iatrogenic injuries as
a group. That is the foundation for a registry.
Twaweza
According to
the
head of the Institute for Healthcare Improvement, "Registries are invaluable
for the improvement of care."
As things are now journalists have trouble finding an injured
patient to talk to for an alternative perspective. So does a Congressperson. So
does a newly injured patient. We could give them a hundred from which to
choose.
facebook
Click email and tell us
how to link to you from here (or phone me at the number at the bottom of this
page). We never ask for anything in return other than whatever mutual links you
can manage.
I've also created a facebook fan page for injured patients.
For one thing, signing up there will create a web presence to which we can link
for those currently without one:
http://tiny.cc/BENEd
The long version that of URL is:
http://www.facebook.com/pages/One-Thousand-Injured-Patients/236181953372?created).
On facebook it is called 1000 injured patients.
By The Way
To help the search engines understand why we are linked, it
would be good if some of the terms below appeared in your online postings near
the mutual links. These are some of the relevant terms on which people search
most often.
Popular Search Terms:
Medical error, Iatrogenic, Misdiagnosis, medical malpractice, Medical crime,
Blacklisting, White Wall of Silence, Patient Safety, medical complaint, medical
safety, Nosocomial infection, drug side effects, medical report, medical
reporting, medical record, Endemic methicillin-resistant Staphylococcus aureus (MRSA),
and state medical board.
There are other terms we would add if people searched on
them, but most get too few hits to be ranked by search engines. However, if
there are terms you think should be on the list, let us know. We continue to
work on the list.
Twaweza is Swahili for “we can make it happen.”
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