Links Page
Some injured patients need to find help immediately and
cannot afford to spend days or months figuring out where they can get it. For
the most part, this
page describes which patient safety sites offer that and which do not. My intention is not to criticize or
discourage sites that don't offer it. It is to guide patients with that specific
need. When you are bleeding there isn't time to write to fifty sites to do that
research yourself.
Yelp,
DrScore and
Vitals.com and more than
forty other sites finally are providing a place where patients can share
information with other patients about their health care. Unfortunately, the most
important things cannot be reported without risking getting sued. I cannot
report the surgeon who tried to schedule me for an unnecessary operation because
he would sue me if I did. But the unwitting patients who let him perform
unnecessary operations can report what a great job he did. That is a bias in the
system that is nothing short of treacherous. Until patients can be protected
from repercussions for reporting, that bias will defeat all attempts to improve
quality and reduce costs in health care.
Angie's List - www.angieslist.com
They don't pretend to be patient advocates. They cannot help you once you
have a problem, but they are trying to help those who have not yet had a problem
by enabling you to file reports on providers that will help other patients learn
from your experience.
http://e-patients.net
RateMDs.com - http://www.ratemds.com/social/
This site contains comments on more than 200,000 physicians across the country.
They won't post comments that could be libelous (like if you report the
physician touched you inappropriately) because even as it is they get threatened
with lawsuits almost every week. So what most needs to be reported cannot be
reported, but it's a start.
PULSE - Persons United Limiting Substandards and Errors in
Healthcare (responds to email)
www.pulseamerica.org They say they were the first support and educational organization in the USA
created to promote patient safety. Their mission statement lists some lofty
goals, but what might be most valuable is their having gotten injured patients
in various states to start chapters. They respond to email and phone calls. You
can form a personal relationship with these people. They are just patients. They
have no authority or official standing, but at least they are on the side of
patients.
People's Medical Society (responds to email)
http://www.peoplesmed.org is a nonprofit
organization dedicated to educating consumers about healthcare and medical
rights. They suggest spending the least amount of time possible in hospitals.
Trisha Torrey bills herself as Every Patients Advocate
(but has no email)
http://trishatorrey.com/ is a link to a
site with links to her other patient empowering activities, but it is generic
information, and of no use if you already are injured. How to find a doctor?
She tells you what everyone tells you - ask friends and such. The fact that you
can find three friends who like a physician's bedside manner does not mean that
there are not thirty people whose lives have been ruined by that doctor. This
isn't to single her out for criticism. As long as most negative information is not
collected in medicine there is no way to rate providers or procedures and no way
to advise patients on how to make intelligent, informed decisions on the topics
covered by sites like this no matter how much these sites try to suggest there
is.
Americans Mad and Angry call themselves "The other
AMA." (didn't respond to email)
http://www.americansmadandangry.org/links.php is a non-profit, non-partisan,
healthcare, consumer activist organization.
Patient to Patient: A Survival Guide (didn't respond
to email)
http://geocities.com/bhchcactus/patient.htm To help patients with
their journey through medicine the writer shares what she encountered in
Australia. It's not so much about the post injury world as it is general
thoughts on how to decrease the odds of becoming the victim of an error in the
first place by communicating, being aware, etc. (like most places it is assumed
problems always are accidents caused by well-meaning people).
It's always good to communicate and be aware, but there really is no way to be
aware of the success rates of various procedures and operators and institutions. No
one records that. No one keeps track of that. Patients get sued when they try
to.
Patient Blacklisting
There is paranoia on both sides of the blacklisting issue. Doctors are in
denial about it. Patients who experience it often go overboard and see it at
every turn. The vocabulary to recognize it and discuss it does not yet exist.
This is true in many areas of patient safety, but it is not always as obvious as
it is with the blacklisting issue.
To see more about it click
blacklisting discussion. To see other pages
on this site about it, click
blacklisting patients.
http://www.patientblacklisting.org/ is the site about which this note
originally was made, but it has disappeared. At the links above are links to
other information about it.
Medically Induced Trauma Support Services (MITSS), Inc.
(sometimes responds to email)
http://www.mitss.org/ was founded in
Boston, Massachusetts by
survivors of medically induced trauma. If you need an immediate response, you
might be better off telephoning them as sometimes they don't respond to email
and when they do it can take days. However, if your problem is abuse, most
groups like this offer only the standard advice about contacting the police and
state medical board and getting a therapist. In this field people still tend to
think that state medical boards (or boards of registration) help patients and
imagine that the police believe such complaints and do something about them. It
would be better for someone to give injured patients a realistic perspective on the obstacles so that they
will not waste time on dead ends as they try to figure out how to get somebody to do
something. All of which sounds more critical of this group than I intend to be.
But the focus of this page is narrow. It is helping patients who need to find
help immediately. So paragraphs are not included about all the good work that
groups like this do - only whether they offer immediate help. If this group
didn't respond to email at all, this note would have been shorter. Since
sometimes they do, that generated more information to convey. And they probably
feel slighted by it, which isn't the intention here. I'm sure they do lots of
good work.
Consumers Advancing Patient Safety (CAPS) (didn't
respond to email)
http://www.patientsafety.org/ bills
itself as a collective voice for individuals, families and healers who wish to
prevent harm in healthcare encounters through partnership and collaboration.
They say they draw on the owners’ tragic personal experiences in the hope of
creating a healthcare system that is safe, compassionate and just. It's good to
see that there is at least one organization mentioning justice. However, they
have promoted grants for people in risk management to study risk management
issues. Risk management departments are one of the biggest obstacles there is to
patient safety. The issues that concern them over and above all others is
protecting healthcare from lawsuits. They do that, in part, by eliminating from
medicine the reporting and the institutional memory necessary for patients to be
knowledgeable and safe. People in risk management will never promote the most
important changes, will never even understand the most important changes, needed
to protect patients. Their mandate and their worldview are in competition with
those of patients. We appreciate the agenda of this site and this organization
to proceed through partnership and collaboration and think it is good that they
work with people in risk management. We just wonder if they really understand
the fundamental problems if they are promoting grants for risk management
professionals to study risk management issues.
American Society for Healthcare Risk Management Foundation
www.ashrmfoundation.org
-
Patients in ARMS (Advocates Reforming Medical Standards)
(didn't respond to email)
http://www.members.aol.com/carmilarms/PatientsInArms.htm Jerry and Carla
Miller's website says they are a
nonprofit group established to eradicate crime and patient abuse. They did many
of the things that injured patients and their loved ones do. They tried getting
help within the medical community and discovered what blacklisting is. They
documented that state medical boards protect physicians and not patients. They
built their case, created a petition, asked for support, and took their cause to
Washington where they demanded legislation. It's a routine followed by many
injured patients. They appear to have worked on it for at least seventeen years. They are
a useful lesson for injured patients who want to change things. Most disappear leaving no trace.
The trace left of theirs is a web site that still
announces that they will be arriving in Washington, D.C. on November 30, 1999
to make their case to the government. (If their site disappears, a copy of it is
here.) Patients do this over and over. Someone should learn from those who have gone before instead of
repeating the same unfruitful exercises. Seventeen years with no effect - it's
not as though they didn't work long and hard at it. It's also not as though they
are the only ones to have gone that route (for instance, Jim and Joan Clarke who
held a demonstration in front of Johns Hopkins Hospital in 2006 - see the
Clarke's press release).
Save The Patient (didn't respond to email)
www.savethepatient.org Their mission
is to educate and empower patients and the public to make effective and informed
healthcare decisions through objective resources. That is better than not asking
questions and not receiving understandable answers, but it assumes that
healthcare providers are objective resources. Physicians recommend surgeons with
no honest data on the failure rate of those surgeons. They recommend treatments
with no long-term, objective measurement of the percentage of patients who are
worse off for having gotten those treatments. Providers probably believe
everything they say, but they are expressing "beliefs," not facts. They are not
objective.
I don't like being critical of people working so hard to help patients, but this
is endemic in patient safety - large amounts of self sacrifice and effort
accomplishing so much less than could be accomplished if the work were based on
better assumptions. Someday if others manage to bring sunshine and increased
information-gathering to medicine, then it will be nice to have an effort like
this helping patients make use of it. Until then, the largest safety problems
for patients will not be ameliorated by this. Although some will, so it's better
than nothing.
Citizens for Medical Safety
(didn't respond to email)
www.citizens-for-medical-safety.com
is run by a patient who says he/she was
intentionally injured in medicine and believes
that change in healthcare can be achieved only through the political process.
Their site ask people to sign a petition that says, among other things, that the
Federal Government should establish uniform regulatory standards and oversight
and that a National Medical Safety Board should oversee it. Is that cookie
cutter medicine? We are not sure what it has to do with reducing the crime rate
in medicine. Being intentionally injured is a crime, isn't it? We would be very
interested in ideas about how to reduce the crime rate in medicine.
We could write several pages about how crippling uniform Federal standards could
be to innovation, initiative, and the personalized care so many need. We also
could write several pages about medical boards thinking and behaving in ways
that result in serious problems and frustrations for the system as a whole. We
are not sure why people imagine objectivity and impartiality on the part of
humans in such positions and why so many think that if those boards are federal
and national they will be better than the ones that are not. And we don't know
why people keep thinking that authoritarian control will fix, or ever know
about, these problems. It is a common refrain though in the healthcare debate.
People keep wanting someone other than patients to make all the decisions for
patients.
Their site also site has a section explaining why free enterprise cannot help
medicine. Their assumption appears to be that free enterprise means abandoning
people who don't have money. However, no one is suggesting that (with the
possible exception of fringe groups of which we are not aware). The people
arguing for free market solutions are arguing for subjecting healthcare, not
patients, to the wiles and the competition of a free market. No one is
suggesting abandoning patients who don't have money. In the USA businesses
outside of healthcare operate in a relatively free market side by side with
social security for old people and food stamps and subsidized housing for poor
people. Those subsidized people get the benefits of the free market that forces
businesses to compete for the subsidized dollars. And those subsidized people
get to scrutinize those businesses in ways that currently are not possible in
medicine. Unfortunately, healthcare currently doesn't allow patients the freedom
of choice that makes markets work. More about that is covered elsewhere on this
site.
Bully OnLine (doesn't provide an email address or phone
number)
http://www.bullyonline.org/ Bullying
it what happens to people who report in medicine. This site bills
itself as the world's largest resource on workplace bullying and related issues.
It is less for patients than for employees. Sometimes healthcare providers
contact me about patient safety problems. This link is more for them. I want
them to be able to get the help they need as well.
My page about bullying and
mobbing is here.
Janet Parker - Whistleblowing
http://medicalwhistleblower.viviti.com/ As Executive Director, Dr. Janet
Parker, provides direct services to Medical Whistleblowers and actively works to
democratically transform legal and social systems to protect the civil and human
rights of Medical Whistleblowers.
GAP - Government Accountability Project (whistleblowing)
http://www.whistleblower.org/template/index.cfm According to their web site
this is a 30-year-old nonprofit public interest group that promotes government
and corporate accountability by advancing occupational free speech, defending
whistleblowers, and empowering citizen activists. They are the nation's leading
whistleblower protection organization.
Wikileaks (whistleblowing)
http://www.wikileaks.org/wiki/Wikileaks A Federal Judge in the USA shut it
down for a while, but advocates gathered to get it restored. Their primary
interest is repressive regimes in other countries, but they assist "peoples of
all countries who wish to reveal unethical behavior in their governments and
corporations." One whistleblower exposed insider training at JP Morgan, so
medicine should fit in too.
Click here for more about
whistleblowing, including some books and a note
about a law protecting whistleblowers in the USA.
JustWhisper.com
(no longer available)
www.justwhisper.com is a site that has disappeared, we hope only temporarily. It was created by Stefanie Fletcher, RN, a nurse who filed a qui tam lawsuit against a Honolulu Hospital and won. She stopped millions of dollars worth of fraud at the hospital where she worked by blowing the whistle
on violations of laws and standards. She then started www.justwhisper.com to help other healthcare professionals do the same.
Her site was setup to help whistleblowers find legal resources in their own areas.
That's one way to advocate for patient safety.
The American
Medical Association's amapatientvoice.com
http://www.patientsactionnetwork.com/index.aspx Have you seen the
advertisements for this on television? In the guise of patients rights advocacy,
the AMA wants patients to join them in defeating the rights of patients. It's like a
Daily Show spoof only they are not joking. On the web at
www.amapatientvoice.com they ask patients to join them
in defeating patients. Sooner or later
someone needs to start an equivalent organization of injured patients to point
out nonsense like this and lobby for laws that actually are in the interests of
patients. I've written more about this here.
This is a good example of the failure of the healthcare industry to discern the difference
between its own interests and the interests of patients. They appear to assume
that whatever is good for healthcare professionals naturally must be good for patients.
This also is a good example of agnotology, as discussed in the book
Agnotology - The Making and Unmaking of Ignorance, Edited by Robert N.
Proctor and Londa Schiebinger. When society doesn't know something, it sometimes
is because special interests have spread confusion in order to prevent it from
being known. The AMA uniting patients to lobby the government to pass laws that
erode patients' 14th amendment right to equal protection, and erode the ability
of patients to hold health care providers accountable, under the guise of this
being good for patients, is nothing short of perverse disinformation spread to
create confusion.
Just the act of claiming that they, the AMA, can be the voice of patients, is
perverse. There are no injured patients on their board. They don't know the
patient's view of the world. And that could not be more clearly shown than by
their attempt to unite patients to undermine the rights of patients at
www.amapatientvoice.com.
Remember, this is the organization that does not adjust for inflation when
publishing figures attempting to persuade us that malpractice costs are soaring
- ideology dressed up as economics,
as one writer put it.
In True Enough: Learning to Live in a Post-Fact Society, the author
Farhad Manjoo says that if we argue about what a fact means, we are having a
debate. If we argue about what the facts are, it is agnotological Armageddon and
reality dies screaming. It is in the interests of health care professionals for
patients to know nothing. They refuse to report negative information and then
create disinformation to further harness power at our expense. They even ask us
to help them do it. This lies at the feet of every doctor who belongs to that
organization and quietly accepts the generation of disinformation, confusion and
worse to promote their own interests.
The Sorry Works! Coalition
http://www.sorryworks.net/ Here's a
site that lots of patients wish their healthcare providers knew about. According
to this group the number of malpractice suits drop when physicians say that they are sorry.
As much as I’d like to see healthcare professionals start saying that they are sorry, this effort
doesn’t address the fundamental problems. It would be great if medicine would stop
assuming a war stance every time it injures a patient. It would be great if
medicine would start coming clean and saying "sorry" when a
mistake is made. But the idea that they can create the culture of honesty they
call for is no more realistic than the idea that mandatory reporting laws would
increase reporting. The vast majority of problems and abuses will not be
uncovered or admitted or cured by a cultural change. Not everything is cultural.
There need to be mechanisms external to their culture that make up for the fact
that they are humans with conflicts of interest. Saying they are sorry when they
make an innocent mistake would be great. It will be helpful and appreciated. But
the reason that safety is an issue in the first place is not solved by saying
sorry. It also is not solved by imagining that the culture in medicine can be
made honest. However, it is nice to see someone promoting some response on the
part of medicine other than declaring war on patients when patients have
problems. Apparently a lot of people feel that way since
twenty-nine states have passed laws concerning apology in medicine.
Share Your Story with USA Today Newspaper
http://www.usatoday.com/news/health/2006-10-11-patient-safety-reference_x.htm
is a page on which USA Today gives a few of the standard, but essentially
useless, thoughts on what to do if you "suspect" a medical error has occurred or
that improper treatment has been delivered. It's the standard list - complain to your state
medical board and such like - written by people who naively assume the things
they
list must be of some value. However, they do have a link there where you can share
your story with them. If they think it is newsworthy, they may contact you for
more information.
Health Grades
www.healthgrades.com is the first national data base with information on
malpractice settlements against doctors. Information on judgments, settlements
and arbitration from 15 states is available.
Health Grades bills itself as the nation's largest independent health-care
rating company. However, it can make information available only for the 15
states that don't shield it. And the 15 states that report it do not all report it in the
same way. The amount of information reported varies from state to state as does
the length of time it stays on a physician's record. These are big problems
making the information of limited value. Currently only these states
report the information:
California, Connecticut, Florida, Idaho, Indiana, Massachusetts, Maryland, North
Dakota, New Jersey, New York, Oregon, Tennessee, Virginia, Vermont and West
Virginia. It is better than nothing.
Patients have almost nothing to go on when choosing physicians. In these states
at least there is this is one step toward giving them something.
Medical Billing Advocates of America
http://www.billadvocates.com/
They charge for their services, but who doesn't need this kind of help? They
charge either a percentage of what the consumer is saved (35% to 40%) or a rate
in the range of $75 to $100 per hour. They say that most medical bills contain
errors. They help you find the mistakes and the frauds in your medical bill
(yes, frauds - crime in medicine occurs at this level too). They help you negotiate your
bill, like when the rate you are being charged is higher than what would be
charged if the insurance company were paying. And they have advocates who
specialize in certain areas. They also have a workbook to help you help your
self that they promote by saying, "Get tips on understanding your medicals bills
and information about how to fight unfair charges with MBAA's Medical Bill
Workbook--only $22.95!"
Staying on top of articles about patient safety
Write to haskell.helen@gmail.com and ask to be put on
her email list. She does a great job of providing a manageable amount of information
to help you stay on top of medical issues in the news. She never tries to sell anything.
She never makes her email list available to anyone else. She never asks for money.
At her own expense she sends emails with links to articles that help you keep
abreast of what's being written about patient safety issues. Although once in a
while her email address changes. If the one above bounces back,
email me and I'll get you the current one.
You can learn more about her at
http://www.mothersagainstmedicalerror.blogspot.com/, a blog that hasn't been
updated in a couple of years. At the time of this writing she also had a web
site under construction:
www.mothersagainstmedicalerror.com.
The Empowered Patient
http://www.theempoweredpatient.com/resources.html - A site that is selling a
book. Her pitch is that there are hundreds of simple, life-saving actions
patients and their advocates can utilize to keep themselves safe in health care.
As much as there are things that it is helpful to know, in the end patients are
dependant on people beyond their control. Those people have to know and care
enough to avoid killing patients. "Don't let the hospital kill you," is one of
the lines. It's not as though there is nothing we can do, but this pitch
overstates it.
We need a system in which outcomes for patients effect outcomes for providers.
Lee Tilson
http://www.rethinkingpatientsafety.com/ is the blog of a malpractice lawyer
with an interest in keeping patients safe. Useful information can be gleaned
from such people.
* * *
This next section contains links to sites and/or
organizations not setup to help individual patients, but to do something to work
for patient safety in general.
Stop Hospital Infections.org
www.stophospitalinfections.org
says to end hospital secrecy to save lives. We couldn't agree more. It is a
project of Consumers Union, the nonprofit publisher of Consumer Reports. They
focus on "super bugs," but anything to reduce secrecy in medicine is worth
fighting for. They ask you to help by filling in a few blanks to send a letter
to your governor. We hope you do it.
www.safepatientproject.com
A part of consumers union. One of the things they want is for us to help
pressure the government to require health care providers to record and disclose
errors and hospital acquired infections.
www.hospitalinfection.org
In some states hospitals are required to report infections, but that doesn't
mean they do.
CodeBlueNow!
www.codebluenow.org - 30 people in
Oregon, who believe that the healthcare system in America is in critical
condition, have grown to over 1,000 members in 46 states. They appear to be
fighting for a single-payer system.
Association for Medical Ethics
http://www.ethicaldoctor.org/ is
an organization promoting evidence base medicine and also trying to do something
about unethical behavior in medicine. There is nothing here to help you if you
already are injured, but they are trying to provide a way to look up specific
physicians to see if they have financial ties that would cause them to be less
than objective about how to treat patients.
It was founded by Dr. Charles Rosen who quit his position as chief of surgery at
a hospital. when he learned that the hospital was not properly sterilizing
surgical equipment. Four years later, he was stunned to discover that the U.S.
Food and Drug Administration approved a new artificial spinal disc despite
missing data, and lingering questions about the doctors who performed work for
the company. These doctors, he said, accepted payments from the device company.
In response he founded the Association for Ethics in Spine Surgery, which has
evolved into the more general Association for Medical Ethics, now with about 300
members. Rosen also keeps a public list of physicians who accept money from the
medical device industry on his Web site,
ethicaldoctor.org.
Bumrungraddeath.com (named after Bumrungrad in Thailand)
www.bumrungraddeath.com presents a
case study meant to heighten the awareness of the citizens of the world
regarding the dangers of "Medical Tourism" in hospitals around the world which
have been accredited by the Joint Commission on Hospital Accreditation or
foreign medical institutions. The site says that "There is nobody policing our
medical establishment. Nobody." In our experience that applies to the USA as
well. However, this site presents data that is said to reveal the complete and
total failure of JCAHO to protect consumers.
Maureen's Mission
www.maureensmission.org - Maureen
died as a result of breast cancer going undiagnosed. Her husband, Bill,
advocates for universal standards of care for breast cancer. Not to take
anything away from the wish to help others, but that is carving out an awfully
narrow piece of the healthcare problem and trying to govern behavior within it
through mandates. It is unlikely that mandates can make people behave well
enough to protect us. Wouldn't it be better if patients and critics, like
Consumer Reports, were allowed access to data and allowed to rate the operators
in healthcare without getting sued so that concerned patients could go where the
care was better thus forcing worse operators to improve go out of business?
Currently we can get better information about headphones we might buy than about
the healthcare professionals we must trust with our lives.
Pamsjourney.org
www.pamsjourney.org - The story (with
music) of a surviving husband trying to get an accounting of the medical errors
that led to his wife's death in a hospital in Dallas, Texas. It includes the
response to his complaint to the Texas Department of State Health Services
which, as is normal with such agencies, had no will to do anything but stymie
him.
SurgicialFire.org
www.surgicalfire.org This is another
site that shows how trying to keep yourself safe in medicine by becoming more
knowledgeable than physicians, nurses and hospital administrators is not
realistic. This is another site calling for patients to
educate themselves and then providing a list of organizations to complain to if
you get burned in an operating room. Unfortunately, they are the usual
organizations like JACHO and the local medical board, organizations that do not
help injured patients.
Delmarva Foundation, Patient Safety in Washington DC
http://www.dcpatientsafety.org/
Maybe they will return someday. They said that they were a service to help the
public, health care providers and policy makers stay informed about regional
initiatives and developments relating to patient safety. Helping policy makers
stay informed seemed like a good idea. Many patient safety sites include a link
to them, but last I checked this site no longer existed. Let me know if you
check it and it is back.
Institute for Safe Medication Practices
http://www.ismp.org says they are the nation’s
only nonprofit organization devoted entirely to medication error prevention and
safe medication use. Both healthcare professionals and you, the consumer, can
file reports with them. If you have been a victim of a medication error or
abuse, go to their site. They say that if you don't report it, such events go
unrecognized and important epidemiological and preventive information will not
be unavailable. I don't think they can do anything for you, but you might help
protect someone else by reporting it.
The Universal Healthcare Action Network
www.uhcan.org - appears mainly to be trying
to get insurance for everyone.
The Darmouth Atlas of Health Care
http://www.dartmouthatlas.org/ is
not someplace you can telephone to get help, and so doesn't really belong on
this list, but it is so encouraging to see people gathering data to help us
understand what is going on (unfortunately, the most important data is not
collected by anyone). The Dartmouth Atlas provides extremely useful and
important information. It can help individuals and communities better understand
their health care. But if 30% of the patients of some surgeon have their lives
spiral out of control, the odds are that no one ever will know about it unless
the kind of damage done is the kind that creates big-money, easy-win lawsuits -
a very rare thing. No one really knows success rates or misdiagnosis rates for
hospitals or individual operators. That's just the beginning of what we don't
know. But this Atlas is increasing what we do know.
The Josie King Foundation
www.josieking.org - Often patient safety
initiatives are founded by survivors of patient safety problems. In this case
their daughter died at the age of 18 months as a result of hospital
errors at Johns Hopkins Hospital (one of the few hospitals that does not sue
patients for criticizing it. A huge round of applause for that, please).
Often such sites have an extremely narrow focus centering on the specific thing
that was a problem for them, like a failure to notify a patient that she had
breast cancer until it was too late. Nothing wrong with narrow focuses on
specific problems to save future patients. But I suspect that the amazingly
talented, dedicated, can-do people who started this have been looking for larger
answers while being guided by people with smaller ones.
More about that here.
It is not a site you can contact for immediate help if you are an injured
patient. You could look at their pages on advice from lawyers about how to find
representation, but before you do you probably should look at the link to
More about that here for reality check
first.
Justin's Hope
http://www.taskforce.org/justinhope.asp and
http://twitter.com/justinHope.
Similar to the Josie King Foundation. The Micalizzi's 11-year old son, Justin, needed only an incision to drain an
infection from his ankle. During the procedure he died. The hospital would not tell them
what happened and would not produce the records. Nothing unusual about that. The parents tried getting a
lawyer, but could not, which also is normal. Because a family member was a federal judge in
Washington, they had guidance. They went as far as to become students at a law
school to try to figure out the rules of the game just to get a lawyer. When
they finally got one, at the last minute their lawyer dropped the case because
of the stonewalling of the caregivers.
It took years to find out that improper
pre-op procedures and then improper medical care following a cardiac event
killed their son. It was three years before they even discovered that an intern,
not the
orthopedic surgeon, had been the one completing the surgery. But hospitals
are required to tell you who your caregivers were, right? The hospital's
risk managers followed the time-honored practices of silence, obfuscation and
denial (more about that in the item below). The story is classic. To
those of us who read these it is the one told over and over by victims of adverse events in medicine.
Now the Micalizzis have a web site that promotes
"Healthcare Openness, Professionalism and Excellence via education, research and
reform." Oddly, few such sites link to each other so their rankings don't rise
with the search engines and they are not easily found. Instead, usually they offer only the standard links to the same organizations in medicine that
did not help them.
They now put out press releases saying that progress has been
made because someone somewhere in medicine promised to start saying they are
sorry when they injure patients, but the
Micalizzis themselves still don't know most of what happened to their own son.
And the next victim of an adverse event won't get such information either.
Doctors promising to say they are sorry is placating patients. When we have
mechanisms that shine light on what happens and allows the patient community to
know, then there will be progress. That's not going to come from health care
professionals no matter how many promises they make.
Dale Ann Micalizzi, Justin's mother, continues to be an
active patient safety advocate with twitter and Facebook and other presences on
the Internet.
Colorado Citizens For Accountability
http://coloradocitizensforaccountability.org/ is another site established by Patty Skolnik
(see the one above). Her son died after a six hour surgery that turned out to be
unnecessary. Later Ms. Skolnik learned unsettling facts about the surgeon
that she felt she should have been disclosed to her beforehand. She now lobbies
to get laws passed to require doctors to report lawsuits and grievances filed
against them. She articulates one of the main themes of this site when she says,
"By allowing patients to actively participate in choosing a competent doctor, we
are giving them the same consumer rights as anyone buying a car would have. This
is our health - and the health of our children - which is much more important
than any product we’ll ever purchase." She is accomplishing a surprising amount
in terms of getting legislators to pay attention to her. However, the
information she is trying to get reported in health care is such a small slice
of what patients need to know. And health care professionals don't obey
such laws anyway. No one enforces them. They might be useful for an individual here
or there bringing a suit, but for patients in general we don't see this work opening
any significant cracks in the wall that separates them from what they need to
know. Even if these laws were obeyed it would not produce nearly enough
information for patients to be informed, intelligent consumers of health care. The vast majority of
adverse events do not become the subject of grievances or lawsuits.
However, what she is doing needs to be done and we're glad she's doing it.
When Things Go Wrong - Responding to Adverse Events
http://www.taskforce.org/JustinHope/respondingToAdverseEvents.pdf This
is a document that was complied by Harvard teaching hospitals and the School of
Public Health and the Risk Management Foundation. High credentials. They met to
discuss what they considered to be "all aspects of an institution’s response to
an unanticipated event and to try to develop an evidence-based statement
addressing these crucial issues." Their meetings even included patients and
legal representatives. BUT . . . they worked within the same framework that
already hides crimes and errors, issuing directives like:
2. The institution’s risk management department
should perform or direct the investigation of the
incident in order to ensure confidentiality and
peer-review protection of the process.
If someone did not know who Dracula was and so did not know what you meant when
you used the phrase "putting Dracula in charge of the blood bank," if they ever
had been victim of an adverse event in medicine and so understood a thing or two
about that, then you could explain the Dracula/blood bank phrase by saying that
it would be the same as putting risk management in charge of patient safety.
The goals of risk management departments are perverse to the community of patients.
Patients protection from crimes and errors. Risk managment's mandate is to
"ensure confidentiality," which means to make sure nothing gets recorded or
reported. That is being Dracula. The Harvard teaching
hospitals are so inured in the culture of medicine that they apparently do not
see that. How more clearly could one show the subjective, self-serving
perspective of people in healthcare than by putting risk management in charge of
patient safety initiatives?
When things go wrong in medicine, no one is on the side of patients, but there
is no one more against patients than risk management departments. The sunshine
that is mandatory for the patient community to become knowledgeable is exactly
what risk management destroys. The "confidentiality" that they ensure prevents the patient community from having access to the information necessary
to develop collective memory and learn the lessons that would enable it to
survive healthcare. Even prosecuting attorneys cannot get access to the
documents necessary to pursue cases because of how well risk management ensures
confidentiality. This is what I mean when I say that safety will never come from
the healthcare community. We patients are going to have to arrange it for
ourselves. How we can is covered on this site.
Patient Safety in Europe
www.sin-nl.org and
www.ieu-alliance.eu are two of the organizations in Europe working on patient safety issues if you want to see
what they are doing in other countries.
The Quaid Foundation
http://www.thequaidfoundation.org/
Smart, competent people who didn't just get a therapist and take a pill and move
on like injured patients routinely are advised to do. It's too bad there is not a good place for people
like them to get
a perspective based on wider and longer experience than their own new one. Their site speaks a lot
about human error. We worry this will devolve into to imagining that a general awareness
of the fact that there are errors, and/or inspection followed by regulation in
medicine, can solve the problem. After a couple of years, their knowledge has
grown no deeper. Talking like this often only is talk that does no good. We are
glad they tried, but are afraid they would have had to know more to actually
help.
Association of Health Care Journalists
http://www.healthjournalism.org/
I didn't know where to list this organization. It needs to be mentioned
somewhere on this site. They say that they are an independent, nonprofit
organization dedicated to advancing public understanding of health care issues.
Their mission is to improve the quality, accuracy and visibility of health care
reporting, writing and editing. My question is, who do they call to get the
patients view of events and issues?
Sites currently being looked at
http://wikihealthcare.jointcommission.org/twiki/bin/view/Home/WebHome - a
site that enables feedback on the accreditation of healthcare organizations.
www.healthcareforalltexans.org - dedicated to comprehensive health care
reform for the state of Texas.
www.patientsafetyvideo.com - It's important to arm yourself with as much
information as possible to keep you, your family and friends safe while in the
hospital.
www.texasadvocates.org - Their mission is to make healthcare safer for Texans.
www.mitts.org - Was a non-profit organization that said it supported, educated, trained and
offered assistance to individuals affected by medically induced trauma, but
there no longer is a site at that URL.
www.ramcampaign.org
- This website is about a four-part primetime television series that was broadcast
on PBS in October 2006 about remaking medicine.
* * *
Below here are links to standard sites
like the AMA and JCAHO
You cannot send an email to these places and get help.
Most of these sites would be more likely to defend the people who injured you,
but they still are part of the standard list of links on most sites that are about patient
safety.
AARP HEALTH or American Association of Retired People /
Health
http://www.aarp.org/health/ is a
non-profit organization that sells insurance and step counters, has discussion
boards about "cigarettes and spouses" and "disability insurance," an alliance
with Walgreens to help you take charge of your health, and they lobby the
government for your interests. But they are not a regulatory agency. They cannot
help you resolve a complaint.
Agency for Healthcare Research and Quality (AHRQ)
www.ahrq.gov/ is the only federal agency that
purports to
The Agency for Healthcare Research and Quality (AHRQ) is the
lead Federal agency charged with improving the quality, safety, efficiency, and
effectiveness ...
Department of Veterans Affairs
http://www.patientsafety.gov/ is an
example of how patient safety sites usually are set up. They have a list of 20
things you can do increase the chances of your own experience being safe. They
have tips and tools and a definition of patient safety that does
not mention abuse
or exploitation, only well-meaning errors. But once you are injured, how can you get diagnosed
and treated and get someone to investigate the situation and get justice or
discipline? Who do you turn to when you find
your records have been altered or destroyed? Who do you contact when the
hospital violates the law by refusing to identify who your caregivers were
because they don't want anyone to know who the witnesses are?
You'll find scant little to help with that from any organization anywhere. If
you are a newly injured patient preparing to shout about something, perhaps you
should shout about that.
American Iatrogenic Association
http://www.iatrogenic.org/ They say
they promote accountability for medical professionals and institutions. They do
not appear to be interested in interacting with patients. They have a link to
recent news articles about iatrogenic injuries and patient safety. But under
"where to get help" all they do is list a few lawyers. I emailed them
asking if they knew of any sites to which an injured patient could send an email
or make a phone call to get some guidance, but they never responded. Sometime
later I emailed them asking if it was okay for me to quote them on my site and I
got a response within hours.
The Institute for Healthcare Improvement (IHI.org)
http://www.ihi.org/ihi is a not-for-profit
organization working world wide primarily through fee-based programs. Safety is
one of the things they list as a goal. They say that people all over the world
need better healthcare and they ought to get it. It was founded in 1991 and is
based in Cambridge, Massachusetts.
JAMA or Journal of the American Medical Association
Free on-line subscription to old articles and abstracts of new ones. On-line subscription for new articles is $125 per year.
I am not sure why all patient safety sites list this in their links. Those of us
who run these sites should organize and have one person report on what is of
interest in this periodical. Others should report on other medical journals. We
should have a communal blog we each contribute to. Contributions should be two
sentences long and describe the subject and provide a link to the latest
information about patient safety. There is too much being published for us
individually to find that which is of relevance to us. JCAHO or The Joint Comission on Accreditation of Healthcare Organizations
www.jcaho.org sets quality standards of
care for healthcare facilities. Their standards are higher than the State and
Federal Government standards and that matters to healthcare providers.
If a JCAHO accredited healthcare agency/hospice does not provide appropriate
care to you, you can complain to JCAHO directly, either at
their website (click on "General Public Menu" and then on "Reporting a
Complaint") or you can write to them at: 1 Renaissance Boulevard, Oakbrook
Terrace, Illinois 60181 Tel. 630-916-5800 Fax. 630-792-5005. However, it is a
rare patient who can articulate and support a complaint in a way that does not
sound frivolous or not crazy to such an organization. If you do file a complaint, let us know
what comes of it. We suspect it will be no better than complaining to a state
medical board, but we hope your experience is better than the experience of
others. Joint Commission Journal on Quality and
Patient Safety™
http://www.jcrinc.com/ is a peer-reviewed journal
affiliated with JCAHO. It is supposed to serve as a forum for practical approaches to improving quality and safety in
healthcare. It covers case studies in order to help healthcare providers adopt or adapt methods, programs, and strategies to their
own settings. But most such articles seem to me to be like boats captained by people who are afraid of letting their anchors touch the bottom. They don't advocate dropping anchors deep enough to stop boats from drifting into trouble.
Passengers will perish while those in charge listen to captains discuss initiatives for
getting crews to commit to programs that sound nice but that don't go deep
enough to touch the fundamental
problems. Joint Commission Perspectives on Patient Safety™
The page at http://www.jcrinc.com/publications.asp?durki=80 lists other publications affiliated with JCAHO like the Joint Commission Perspectives on Patient Safety which is a monthly newsletter for
healthcare providers with “how to” information on analyzing and
preventing errors. It emphasizes prevention, but also addresses how to react to adverse events. Is there anything here on unfriendly practices? Structures and habits capable of hiding crimes easily hide errors.
And that is what healthcare professionals do with both - hide them. Their
approach appears to be based on
the Saint Theory of Medicine.
MDchoice.com
http://www.mdchoice.com/pt/index.asp is a medical information portal that searches medical sites, journals and articles in a "user friendly" way. There are lists of diseases, medications, health news and medical databases like MEDLINE, CANCERlit, AIDSline. A related site for
healthcare
professionals is located at: www.mdchoice.com/index.asp.
But nothing for survivors of adverse events.
American Medical Association (AMA)
http://www.ama-assn.org/ Patients
tend to think the AMA is set up to protect them. It is a membership organization
that advocates for healthcare professionals and lobbies against the rights of
injured patients. It would not make sense to communicate your complaints to
them. There needs to be an American Patient Organization to which it would (see
one number).
According to the
piperreport, the vast majority of physicians do not belong to the AMA
anyway.
MedicineNet.com
www.medicinenet.com has explanations of
diseases, conditions, procedures and tests, first aid, and lists poison control
centers, medications and their side effects, and has a dictionary of medical
terms. Board Certified medical doctors created it. It provides no guidance for
injured patients.
MedicineList.com
www.medicine-list.com is an internet directory which provides an extensive listing of online resources dealing with all aspects of
healthcare, including hospice.
If you find resources there that could help injured patients (things do change)
let me know.
MEDSCAPE.COM
www.medscape.com has a large collection of clinical medical articles, a free searchable database, and daily medical news. It
is used by physicians for research, although "Medscape Consumer" is in their plans for the future.
NATIONAL INSTITUTE OF HEALTH
www.nih.gov/ has information on many illnesses and treatments.
NATIONAL LIBRARY OF MEDICINE
www.nlm.nih.gov Provides access to MEDLINE and scientific reports about diseases and conditions in medical journals from around the world.
The NEW ENGLAND JOURNAL OF MEDICINE
www.nejm.org is one of the most respected medical journals. Issues more than six months old can be accessed for free. A subscription to the on-line version of the journal is $99 per year.
NIH (National Institute of Health): HEALTH INFORMATION
www.nih.gov/health has vast amounts of information.
REUTERS HEALTH INFORMATION SERVICES
www.reutershealth.com has medical news, searchable archives, and a searchable drug database.
NATIONAL PATIENT SAFETY FOUNDATION
http://www.npsf.org/ Founded in 1996 they say
they can make a measurable, long term difference by serving as a central voice
of patient safety and leading the transition from a culture of blame to a
culture of safety in medicine (we suspect safety cannot be reached while being
in denial about blame). They say they are the indispensable resource for
individuals and organizations committed to improving patient safety. But their
initiatives appear to be built on
the Saint Theory of Medicine. With a board of directors overwhelmingly
composed of doctors, it is unlikely that their thinking ever would be based
on anything else.
Patients can participate in their annual conferences and can subscribe to their
moderated E-mail discussions and browse archives of previous discussions. Maybe
somewhere in all that you will find some direction about what to do if you are a
victim of error or exploitation or abuse. Prior to having such problems one of
the things they suggest is taking a
patient advocate
with you to the hospital. That seems like a good idea if you can find one and
afford one.
I did not write to them asking if they give help or direction to victims who
contact them.
THE OHIO PATIENT SAFETY INSTITUTE
http://www.ohiopatientsafety.org/ Many states have organizations like this.
These are the kinds of organizations listed on the links page of sites about
patient safety creating the impression that someone protects and helps patients
who have been injured. In reality, although there are initiatives to try to
reduce the number of errors in the future, there is nothing to help those
already injured. This patient safety institute's site states that they are "a
resource for the healthcare professional," which more or less is what all such
sites are. I wrote to them anyway, on October 4, 2006, asking if they would
respond to an injured patient asking for help. They never responded.
UCompare Healthcare
http://www.ucomparehealthcare.com/
They provide reports to help you compare healthcare providers so you can make
informed healthcare decisions. We are not aware of anyone anywhere having access
to the information necessary to do that. Even your primary care physician does
not, and he/she is trying to keep track of only one community. No one knows
misdiagnosis rates or success rates in medicine. That's not all no one knows in
medicine, but what could be more basic to making informed choices than that? We
had an email discussion about that and they said that they are working hard to
break down the transparency barriers while, in the meantime, providing consumers
with the information that is available - cost and volume measures, AHRQ patient
safety measures instituted and such like. You have to be impressed that they
emailed us to discuss that. Most sites don't reply to email, let alone initiate
it.
Plastic Surgery Research . Info
http://www.cosmeticplasticsurgerystatistics.com/checkasurgeon.html is a site
that tries to help people make informed choices in choosing plastic surgeons by
checking the American Board of Plastic Surgery at
http://www.abms.org and The American Association for Accreditation of
Ambulatory Surgery at http://www.AAAASF.org
and state medical boards and other such organizations. One should check all
those organizations before scheduling surgery, but one also should be aware that
none of those organizations know the success rate or the misdiagnosis rate or
most of the other information that would enable a patient to make a choice that
could be regarded as "informed." We know of a woman who got her eyelids worked
on. A small, simple cosmetic operation that left her unable to close her eyes
ever again. Not even to sleep. She can't blink when the wind blows. It turned
her life upside down forever. And that is not recorded anywhere. How often does
that procedure produce a bad result? No one knows. No one is counting. Future
patients researching that operation and that surgeon will have no way to know
how often that might be the result. No one keeps track. Not even when patients
complain, which very few do.
Georgette Gilbert, a woman who was unhappy with the results of her plastic
surgery, started a web site to
complain about it. Since there is no advocate for most patients to turn to, in
desperation, some go public. The doctor sued to shut her up. One of the things
making it impossible to make informed choices about healthcare is how the people
we most need to hear from are afraid to speak for fear of suits. This particular
patient won the suit so her site is on line.
The article in
a Los Angeles newspaper explains the legal precedent that protected her.
WebMD.COM
www.webmd.com is a for-profit news and
information service that has consumer-focused healthcare information. They
say they try to provide objective, credible and trusted healthcare information to help people play an active role in managing their own health.
But they don't have information to help you if you already are injured, which is
what this page of links looks for. They don't tell you how to get iatrogenic injuries diagnosed or how to get a
hospital to identify the witnesses of your adverse event. Their advice assumes healthcare
professionals naturally would help injured patients. Such sites never appreciate
how unhelpful medical professionals are, to say the least, when iatrogenic
injuries are presented to them. Sites like this are created
with the help of medical professionals, not injured patients, and have that
bias. If they didn't, they would lose the support of the medical community and
the advertising that helps pay their bills. There is
no economic incentive to view the world form the perspective of the patients who
are killed or injured unnecessarily in medicine. So they have nothing available
to help injured patients or their families.
IHealthRecord
http://www.ihealthrecord.org
apparently is free for patients. They are trying to be a central repository of
your medical records so that they will be accessible when and where you need
them to be. They say that the records remain completely under your control and
that you decide who sees them and what they contain. You can carry a card with
you that enables access to them should you be in an emergency. We haven't tried
it, but it sounds like a good idea. Let us know if you know or learn anything
about it. Also accessible through http://medem.com/.
The American Academy of Family Physicians
http://familydoctor.org/ is another one
of these sites that helps you become a smarter patient. Under "Medical Errors"
all the information is about what you can do to prevent them. Nothing about what
to do once you have become a victim. And no mention of abuse. They do not appear
to be an organization to contact for help after an adverse event.
* * *
Government Sites
If you think contacting your government representatives is relevant to your
situation
here are two links that might help with that.
Find your congressperson:
www.firstgov.gov Send snail mail if you
want a response. They get so much email that they cannot open it all. But it
might be faster to call your local library or local board of elections to ask
who your representatives are.
VOTENET.COM
www.votenet.com is your guide to laws being passed or proposed and how to contact your representatives about them.
Keeping up with this can be overwhelming. Some injured patient wanting to help
make a difference should make it his/her job to stay on top of proposed
legislation and keep the rest of us informed.
* * *
Links to Two Sites
with General Health Information
Jane Brody in the New York Times wrote that the two sites
below are reputable sites for information if you have received a diagnosis and
want further information about it. She says to avoid anecdotal information
posted by patients or patients' relatives. Unfortunately, if the issue is an
adverse event in medicine, that's all there is.
United States Department of Health and Human Services
www.healthfinder.gov - lists
conditions and problems alphabetically. Neither iatrogenic nor safety are on the
list. However, they do now have a fledgling attempt to rate hospitals. See the
item below.
Hospital Compare
www.hospitalcompare.hhs.gov
This is an effort of the Department of Health and Human Services to do something
about medicine's lack of accountability, the inability of patients and others to make intelligent purchasing decisions
in the information vacuum surrounding healthcare,
and to ameliorate the way the current system rewards mediocre, poor and even
unfriendly performance. We are 100% in favor of their doing this, but. . . .
Click here to read more.
The National LIbrary of Medicine
www.nlm.nih.gov - In addition to medical
information they give grants for medical research. It seems oriented toward
clinical trials. Would they give us a grant to put teams of nurses in mock
operating rooms with mock surgeons who do something horrible to the patients so
that we can monitor how nurses respond? Some of us already know, but a study to
make it clear to the rest of the community would shed important light on why
healthcare professionals are the last ones who will make medicine safe.
* * *
The links pages on most sites create the appearance that
resources are available for patients who are injured. There is no phone number
an injured patient can call to get guidance and help. There is no knowledgeable
advocate available for injured patients. Ninety-nine percent of the sites cannot
even inform the patient how to get iatrogenic injuries treated. And what could
be more important than that?
People in medicine go through schools and internships that indoctrinate
them with a unified world view and a faith in and loyalty to each other. Injured patients arrive one at a time in isolation.
They have no way of finding or helping each other. They are
expertly dispensed with by the collective in medicine. There needs to be a phone
number and a URL that patients can go to to get help.
Every state has medical boards and associations and guilds
that advocate for healthcare professionals. None have advocates for patients.
Official patient safety initiatives invariably are run by MDs and RNs. What is
wrong with that is covered elsewhere on this site.
* * *
This page still is under construction. Below here I've parked
notes I didn't know where else to put.
In November of 2006 (see "robber")
two 23-year olds did a favor for a stranger. In return he pulled a gun on them
and robbed them. After the robber sped away the two chased him in their truck.
They said, "It's not so much that he stole our money, but it's that the drew a
gun on us and we were afraid that if we let him go, he was gonna do that to
someone else."
That is the position in which victims of abuse in medicine
find themselves. The most likely person to commit a crime is someone who already
has committed a crime. The miscreants who victimized a patient in a hospital are
just such people and still have unfettered access to other unsuspecting,
helpless patients. How could a decent person do anything but try to protect
others? Victims of error and abuse can feel a duty to try to help Sometimes they
create websites.
Unfortunately, there is no phone number an injured patient can call to speak to a
professional advocate
about what to do. None of the organizations that injured patients can locate
through Internet searches will tell them how difficult it will be to get
iatrogenic injuries diagnosed, let alone treated, and what to do about that.
There is no one to guide victims of abuse or error, no one to tell them what to
do to help protect future victims.
* * *
Newly injured patients arrive wanting their stories to be
heard. Sometimes they shout for legislation. Sometimes they notify government
representatives and send out press releases. Usually they put themselves in the
position of being leaders and teachers asking others to support, follow and
learn from them. They are asking that of other injured patients who have been
working on this longer and know more about it. The newly injured shout for legislation
without knowing what legislation already exists or what new legislation should
look like. They repeat the story of what happened to them in medicine at every
opportunity, but don't get the response they want. In a few years they
disappear. More newly injured patients arrive and repeat the sequence. What can
be done to help the next arrivals learn from the last ones? What could be done
to make it so that something positive results instead of more noise with no effect?
The battle of ideas must precede the battle in politics. New
people jump straight to politics and press, often shooting themselves and the
movement in the foot as they do. Commonly they cannot even tell their own stories in ways
that are understandable and sympathetic. A way needs to be created to help them
achieve something productive with their outrage and energy.
Injured patients tend to be isolated for many reasons. The
trauma they have suffered changes them. It is not uncommon for them to become
social black holes as a result of being overwhelmed by the damage they have
suffered. Some live with the feeling that the building is on fire and no one
else sees it and a warning must be shouted. It makes them less amusing
dinner party guests. It makes them less able to submit to the compromises of
group formation. The most recently injured often expect all others to submit to
their vision. It leaves injured patients isolated and unsupportive when they
need to be the opposite. All they have in common is that they are injured
patients facing a healthcare industry that is solidly unified on the matter of
protecting itself from its victims. Injured patients have not been through a
training and education process like medical school and internship to get them
marching in step that way. Victims of sex abuse have little use for discussions
of errors. Victims of errors have little tolerance for discussions that assume
that some healthcare workers might not mean well. So they don't work together.
They don't even link to each other's websites to raise their rankings. And newly injured patients continue to
arrive unable to find anyone to turn to for help other than sites like the ones
below.
* * *
Unfortunately, the people who run these sites generally will
not link to each other - one of the reasons for their having such low rankings
with search engines. And one of the reasons that injured patients who find one
of these sites cannot find the others. When newly injured patients search the
Internet for help, they find only departments of health and hospital
associations and the like, resources that provide general guidelines or
resources for professionals, but nothing for newly injured patients.
* * *
Journalists researching patient safety speak to several doctors
and accept their self-serving paradigm as gospel -
like learning about tobacco by speaking
only to tobacco companies
or about prisons by speaking
only to guards.
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