Registry of Injured Patients
Linked to Each Other
facebook page for injured patients:
As things are now journalists have trouble finding an injured
patient to talk to. So do Congresspersons. So do newly injured patients. We
could give them hundreds from which to choose.
On the facebook page above, journalists already have posted
notes asking to talk to injured patients. That's part of what that page is for.
On the one hand, it is a way to become visible. On the other hand, it is the
beginning of a registry of injured patients.
Everyone gets their information from providers
so no one knows we are here.
An injured patient wrote to me saying, "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 like her.
We need to link to each other to make it so that her first
search will connect her with other injured patients. In order to make injured patients more
visible, in order to overcome being loners, in order to help
newly injured patients find help and information, we need to link together. That
is a fledling registry.
Registry of Injured Patients
head of the Institute for Healthcare Improvement, "Registries are invaluable
for the improvement of care."
For instance, there is registry of patients with Cystic Fibrosis
that enabled them to double their own survival rate by seeing what worked best
for them. Caregivers do not do that. They get paid for treating, not healing.
There is no economic incentive for them to figure out what is best for patients.
Patients need to form registries and groups in order to do that themselves, to
determine which treatments and which facilities and which physicians have the
best success rate. The last thing the medical community wants is for patients to
be able to tell which physicians are good and which are not.
Especially Iatrogenic Injuries
People with iatrogenic injuries find they cannot get 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 dark and treacherous aftermath of an adverse
event. How did other injured patients get treatment? How did they get their primary
care physicians to release their records? How did they get a note into the
record about the existence of their injuries when no doctor or nurse willingly
will put one there? How can you tell your story without getting sued?
We should create mutual
links between injured patients so that search engines
will deliver people to those who are linked together. We need to make it possible
for search engines to deliver something other
than the party line written by providers for searches on terms like
"iatrogenic injury." Our stories are the foundation for the safety of
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.
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
Once again, the facebook page is at this link:
The long version that of URL is:
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
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.”
Where souls are forgotten,
Where black is the color, where none is the number
And I'll tell and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I'll stand on the ocean until I start sinkin'
After they've injured you and, not just cast you aside, but done
everything in their power to crush you, that's what the world is like.
And they don't even know they do that to patients.