Some injured patients need to find help immediately and
cannot afford to spend days or months figuring out where they can get it. In part, this
page describes which patient safety sites offer that and which do not. When you are bleeding there isn't time to write to fifty sites to do that
However, most of the sites covered he do not even purport to be of help to injured patients. An unfortunately large number of them are just organization imagining that press releases produce change.
Hospital Violations Database
http://www.hospitalinspections.org/ They can't know about more than a small fraction of them, but it's a start.
USA's most wanted health care
http://www.oig.hhs.gov/fugitives/ At the time of this writing it is a list that appears to be concerned only with financial frauds.
www.hospitalinfection.org In some states hospitals are required to report infections, one of the more difficult causes of patient harm to cover up, but they are amazingly proficient at covering up even that, for example see this CDC study on cause of death reporting.
Another hospital Infection Rate Site
http://www.hospitalinspections.org/ A website run by the Association of Health Care Journalists that has details about deficiencies cited during inspections in response to complaints. Unfortunately, it does not include the results of routine inspections.
http://projects.propublica.org/checkup/ This site gathers data on the prescribing habits of physicians so that you can look up a doctor to get an idea of what to watch out for. This might be the most useful information you can get about a physician. Most other information that can be gotten depends either on humans to report accurately or on a system that, one way or the other, filters it. But this site has hard data that can tell you a great deal about how a physician treats his/her patients. Does the physician throw drugs at every patient? Does the physician favor certain kinds of drugs? Lots of pain killers? Lots of psycho pharmaceuticals? Lots of antibiotics? Lots of newer drugs with shorter track records? Lots of diet and cholesterol drugs? Lots of generics? Lots of drugs that all are from the same manufacturer? This can help you understand why the physician is prescribing a certain drug to you. For this physician, it might be the go-to solution for a variety of problems. I knew a physician who rarely used diagnostic tests, but instead through one drug after another at patients hoping that eventually one of them would work. When they did not, he prescribed mood altering drugs so that they would not care.
There are physicians who do not think that the answer to every problem is a prescription. This could help you find one of them.
http://www.rightdiagnosis.com/ The most common cause of harm to patients is misdiagnosis or delayed diagnosis. This site helps you check up on the people who do your checkups. It also leads you to tools that better enable you to determine if you need a checkup in the first place. For instance, tools that enable you to check your own cholesterol. How much more closely could you monitor how changes you make to your diet affect your cholesterol if you didn't have to pay for an office visit and/or a lab visit everytime you checked that?
30% of second opinions do not agree with first opinions. Do either of them have it right? You can begin looking into that here. In a study of deceased patients a third of them had not been treated for the problems that killed them. Don't be one of them.
This site is a one of several such efforts from Health Grades.
www.healthgrades.com was 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 firstname.lastname@example.org 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 Darmouth Atlas of Health Care
http://www.dartmouthatlas.org/ is not someplace you can telephone to get help after getting injured, but if you like to study data to better understand your future, this place has some of the most interesting data around, if you are enough of a wonk to dig and study it.
Unfortunately it is not the data patients need more than any other. If 30% of the patients of one particular surgeon have their lives spiral out of control as a result of those surgeries, it would be rare for anyone to figure that out in part because surgeons create their own records and other physicians almost never will create a subsequent record that does anything other than hide any link between a patient's problems and previous care.
In general, no one can learn the 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.
Patients Sharing Information with Patients
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. You cannot report the surgeon who tried to schedule you for an unnecessary operation because he would sue you if you did. But the unwitting patients who let him perform unnecessary operations can report what a great job he did (most victims of patient harm problems never figure out there was a problem). That is a bias in the system that is nothing short of treacherous. That bias corrodes attempts to improve quality and reduce costs in health care, and no one is even talking about doing anything about it. Sites like these mean well, but besides merely skimming the surface, they have no mechanism that would dig to find out what patients would report if they understood more than what they are told by caregivers who don't want them to understand.
http://doctoredreviews.com/ Two law professors became outraged by the tactics being used by doctors and dentists to censor patients, often by getting them to sign a form that assigns to the doctors the copyright to anything the patient might write about them. These law professors founded this site to educate both patients and doctors about what they are doing.
Doctors and dentists get contracts for patients to sign at http://www.medicaljustice.com/, a site founded by doctors.
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. However, about the only thing that comes from efforts like these is gripes about length of time spent in the waiting room and such. Patients are too intimidated, mislead and discouraged to write most of what other patients need to know.
Keep in mind that doctors can sue you if you rate them, as in this article at ihealthbeat.org, and that that has a chilling effect on the kinds of reviews that get written.
Rating prices of hospitals
http://hospitalvictims.com/ is trying to do something about 'financially impossible' hospital charges. Somehow they calculate the costs the hospital incurs versus what the hospital charges. And frequently they compare that to what Johns Hopkins charges for the same treatment. I'm not sure how accurate this is, but it might be a way to begin researching hospitals in your area.
https://docnosis.com/ Your history is important to your doctor. Your doctor's history should be important to you. People at this site will check court houses for you to see if a specific doctor you ask about has been sued many times. Since only one in some thousands of injured patients manages to get a lawyer, the fact that a doctor has not been sued does not mean the doctor shouldn't have been. But if a doctor has been the subject of multiple suits, imagine how many patients must have been injured in order for any to have become lawsuits.
http://www.hospitalgripe.com/search-complaints.html Sites like these come and go fairly quickly. Complaints at sites like these tend mostly to be about arrogance or rudeness or indifference and such like. The fact that another hospital is humble and kind and creates a great patient experience doesn't mean it doesn't cause more unnecessary injury and death. It might just mean they are better at persuading injured patients that they were lucky to get such great care or things would have been worse. But currently there is no way to discover that, so we have no choice but to go with this.
http://www.patientnetwork.fda.gov/ is the site at which the Food and Drug Administration in the USA asks for the involvement of patients in the process of drugs and devices getting approved. They say you can become a patient representative there.
Substance Abuse and Mental Health Services Administration (SAMHSA)
www.samhsa.gov is a public agency within the United States Government's Health and Human Services Administration. It was established in 1992 to make substance use and mental disorder information, services, and research more accessible. Even though its mission is to reduce the impact of substance abuse and mental illness on America's communities, during the time it has existed the number of people dying unnecessarily from prescription drugs has continued to increase. They caution that taking prescriptions is risky, especially anything taken for pain.
For instance, did you know that hydrocodone is synthetic heroin? Or that OxyContin, Vicodin, Xanax and Soma now cause more deaths than heroin and cocaine combined? More people now die from prescription drugs than from traffic accidents or illegal drugs. We cannot always be happy nor always be free from pain, but we live in a culture that programs us to swallow or inject something everytime we experience something we don't like. It is ingrained from infancy. When a child has a problem something is swallowed to fix it. Watching my friends when I was a teenager I began repeating to deaf ears that marijuana is not the gateway drug. Prescriptions are.
If you can find a way non-medical way to live with pain and/or other unhappiness, you probably should.
Health Insurance Marketplace for Individuals
https://www.healthcare.gov/marketplace/individual/#state=ohio This might be the only good thing about ObamaCare. If you join this you can get plans that are required to contain certain provisions in order to make them easier to compare and contain fewer surprises down the road, or at least different surprises.
However, in part this is the government getting mileage out of the idea that health care is expensive not because third parties pay for treatments that are ordered by second parties who have nothing to lose and something to gain and do the ordering for first parties who blindly do what they are told and pay what they are told with no opportunity to comparison shop. ObamaCare appears to think that medicine is expensive because insuring that is expensive. Would insuring against mosquitoe bites in a swamp be expensive only because insurers charge too much or because swamps are full of mosquitoes? Eventually this will lead to rationing and, probably, worse care. But, for now, there will be increased benefits for some individuals.
Someone's Personal Story
http://www.mayovictim.com/ - The Mayo Clinic is one of the best facilities around, and yet still . . . One of the things under-acknowledged by the health care industry is the downside of treatment. Often it is better to live with the problem and not be exposed to treatment.
The "Patient Always First Health Record" was set up to make it so you don't have to fill out all the same information from memory every time you visit a doctor, but their link has gone dead. Perhaps they will surface at a more memorable URL if you do some searches.
To solve for myself the problems they seek to solve, I created a Word Document with the chonology of all the surgeries and such future doctors could want to know about. I take it with me to new physicians and write "See Attached" on many sections of their forms. It's easier to read and less suseptible to misinterpretation when typed anyway.
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. What most needs to be reported cannot be reported because of (frivolous?) lawsuits brought by caregivers, 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, and a lot of what they say merely parrots the party line repeated by healthcare interests, 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 really is provider-centric. Most of her information comes from the perspective or the provider and so is generic and of no use if you already are injured and not much more use if you are trying not to get 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. As long as most negative information is not collected in medicine there is no way to advise patients on how to make intelligent, informed decisions on the topics covered by sites like this. If they don't know that themselves, they don't know enough to give advice grounded in reality.
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.
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 enable us to become more grounded about it so that we can recognize it and discuss it does not yet exist. This is true in other areas of patient safety as well, but it is not always as obvious as it is with the blacklisting issue. A page with more about is is on this site at blacklisting patients.
There also is a page called blacklisting discussion.
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 (more easily referred to as patient harm). 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, for example, 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 - more of the generic advice of well-meaning people who still think that state medical boards (or boards of registration) help patients, and imagine that the police are capable and willing to do something about the complaints of patients.
It would be better if someone gave 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 a main purpose of this page is helping patients in need of help to find it. So paragraphs sometimes are not included about the good work that groups like this may try to do - only whether they offer immediate help and if that help is of much help.
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 "just" because almost none of them are aware that it is the fundamental issue. However, this group promotes giving grants to people in risk management to study risk management issues. Risk management departments are one of the biggest obstacles there is to patient safety. The fundamental mandate of risk management is to protect healthcare from patients, especially from lawsuits filed by patients. 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 are against the most important changes needed to make patients safe. Their goal and worldview are in competition with the interests of patients.
One cannot help wondering whether people promoting giving grants to risk management to study themselves have any idea what the problems are for patient safety.
American Society for Healthcare Risk Management Foundation
www.ashrmfoundation.org (a URL that now forwards to http://www.hospitalconnectsearch.com/) - See the paragraph immediately above. Regard them as people who understand and represent the interests of hospitals first, the people who work in them second, and the interests of patients when it is in their interest to do so - a characterization to which anyone in medicine would object, which shows how little understanding they have of the interests of patients.
The medical community assumes that anything that is in their interest ultimately is in the interest of patients, but we are hoping that when there finally are true patient advocates who know something, these organization will begin to understand that their perspective is neither objective nor the final word nor in the interests of patients.
Patients in ARMS (Advocates Reforming Medical Standards) (didn't respond to email)
http://www.members.aol.com/carmilarms/PatientsInArms.htm (a link that has gone dead, but a copy of it is here). 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 was a web site that for years afterwards still announced that they would be arriving in Washington, D.C. on November 30, 1999 to make their case to the government.
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. The assumption is that healthcare providers are objective resources for information that will empower patients. 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 (almost nothing, really) than could be accomplished if the work were based on better assumptions (see Transparency and Community Patient Agencies). Someday if others manage to bring sunshine and objective information-gathering to medicine, then it will be nice to have an effort like theirs helping patients make use of it. Until then, the largest safety problems for patients will not be ameliorated by efforts like this.
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 asks 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 that 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 know about, these problems. It is a common refrain in the healthcare debate though. People keep wanting someone other than patients to make all the decisions for patients as though other people can run our lives better than we can.
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). The people arguing for free market solutions are arguing for subjecting providers to 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 and we still have social security for old people and food stamps 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
http://www.bullyonline.org/ Bullying is 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. It is against the law in some countries. In the USA there isn't even awareness of its existance, let alone legislation to address it.
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/ 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.
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." So they could possibly help some whistleblower with an idea about to uncover a problem in medicine.
Click here for more about whistleblowing, including some books and a note about a law protecting whistleblowers in the USA.
Medical Association's amapatientvoice.com
http://www.patientsactionnetwork.com/index.aspx Did you see the advertisements for this on television? In the guise of patients rights advocacy, the AMA wanted 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 used to ask patients to join them in advocating for that which, in reality, defeats patients. Anyone who still thinks that anyone in medicine can be trusted to represent the interests of patients needs to be shown this.
Sooner or later someone needs to start an organization like the AMA only composed of injured patients who 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. It's that same old assumption - that whatever is good for healthcare professionals naturally must be good for patients.
This also is a good example of agnotology (links to a definition elsewhere on this site), 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 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 plights creates for injured patients. 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 exist in a culture that refuses to report negative information (and manages to persuade itself of the opposite) and then creates disinformation to further harness power at the expense of patients. They even ask patients 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 at the expense of the patients for whom they are supposed to care.
Just having the AMA host a site with the URL www.amapatientvoice.com is waving a flag announching agnotological Armageddon.
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.
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.
http://www.rethinkingpatientsafety.com/ is the blog of a malpractice lawyer with an interest in keeping patients safe.
www.anaestheticawareness.info "Conscious" is community generated environment for the discussion, debate and retelling of testimony centered around experiences of Anesthetic Awareness and connected topics. One of the things they press for is greater transparency within the medical profession, for it to quickly admit when mistakes have been made and to quickly address them with patient welfare as a priority.
Sad to say but groups like these come and go relatively quickly. In part I suspect it is because of never figuring out what the problems are or what to do about them. So they get discouraged when sending out press releases that don't make sense doesn't result in change.
For instance, pressing for the medical profession quickly to admit mistakes? They might as well press for termites quickly to notify you of when they are eating your house.
"Raising awareness" is taken far too seriously as an endeavor.
UPDATE: Their site has disappeared.
Action Against Medical Accidents
http://www.avma.org.uk/ avma says it is the charity for patient safety and justice. They are in the United Kingdom where they have been promoting safety and justice for 25 years. They even have a link to help you find a solicitor. Too bad they appear to be interested only in accidents and don't have a link for things that are not accidents.
* * *
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.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.
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.
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.
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. They are provider-centric, but both health care professionals and consumers can file reports with them. They say that if you don't report it, such events go unrecognized. I'm not sure who is going to recognize it, let alone believe it, if a patient does file a report with them, but it is another place where patients can.
Others the things of interest on their site include a list of drug names that easily are confused (this link) and tall man letters that help prevent such confusion (this other link).
The Universal Healthcare Action Network
www.uhcan.org - appears mainly to be trying to get insurance for everyone.
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.
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. 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 imbedded 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 a collective memory and learn the lessons that would enable it to better 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 (see Community Patient Agencies).
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. All we can do is sigh that they have no more sophisticated knowledge than that - errors (see Nequamitis). They appear to be another group imagining that press releases can do no harm even when they don't know what they are talking about.
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?
NAMI - National Alliance on Mental Illness
http://www.nami.org/ says it is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of the mentally ill. It claims that it is the most formidable grassroots mental health advocacy organization in the country.
However, 56% of its financial funding comes directly from the Pharmaceutical Industry. This is a huge problem in medicine - people and organizations with conflicts of interest claiming to be objective and have nothing but the best interests of patients at heart.
The result in this case is that when NAMI provides educational information about psychiatric drugs, it does not include information about the side effects, like suicide and homicide, that can result from taking them. According to Dr. Janette Parker (footnoted below) it is not a consumer-run organization, but rather is in the business of retaining and gaining customers for the pharmaceutical industry. NAMI even pushes for lifelong therapy when that may not be necessary.
at this link they say that they enable feedback from health care professionals only on the accreditation of healthcare organizations.
Sites currently being looked at
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.
http://medicalharm.org/ - An attempt to clean up medicine in England.
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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 /
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 an agency within the United States Department of Health and Human Services (HHS) charged with improving the quality, safety, efficiency, and effectiveness of health care. I used to begin paragraphs like the ones below by saying that I am happy for any effort anyone makes to try to make medicine safer. I am going to stop saying that now. We are at the point at which we no longer should be required to feel grateful for people spending so much time and money so futilely.
They are learned people most of whose learning came from medicine. Not knowing what is wrong with that no longer is acceptable. It leaves them mired in the same assumptions that prevent medicine from making itself safer. So the Global Trigger Tool used by someone else detected 10 times as many adverse events as AHRQ's Patient Safety Indicators detected.
As 1 of 12 agencies within HHS, AHRQ supports research that they say helps people make more informed decisions and improves the quality of health care services. But the reporting system they are rolling out, that is supposed to enable patients to file complaints with them, is going capture an even smaller percentage of what is wrong.
They say that they started it with a discussion in which they said they were open to every thought anyone would suggest. If that is true, the people in the discussion didn't have enough experience or imagination to suggest anything better than what already has proved ineffective elsewhere.
They did not even make a provision for what to do with complaints about the worst thing that can happen to a patient. They will not even accept such complaints. They do not know anything about those types of complaints or what happens to the people who have them and they don't want to. I know because I spoke to them. They are set up to avoid ruffling too many feathers on a bird that needs to be plucked.
For all the educational degrees they have, they haven't read the right material, spoken to the right people, or had the right experiences to understand what the fundamental problems are and why what they are doing doesn't address them.
Watch as the rates of bankruptcy, infection, unnecessary injury and death do not come down as a result of their efforts just as those rates have not come down as a result of the similar efforts that preceded them. Could it be that they are thinking, like many people in government are thinking, that if something never has worked before, you just need to do more of it?
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 to 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.
The Institute for Healthcare Improvement (IHI.org)
http://www.ihi.org/ is a not-for-profit organization working world wide primarily through fee-based programs. They have online courses among their other offerings. 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. They developed the Global Trigger Tool mentioned above, but there is a lot on their site that I did not have time to cover. If you have time and want to make a contribution, tell me what you find out about them.
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.
You can read more about them on this site at this link.
Joint Commission Journal on Quality and
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™
http://www.jcrinc.com/ The page originally posted about this on their site disappeared, but perhaps is elsewhere on their site now. It listed 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 emphasized prevention, but also addressed how to react to adverse events. We found nothing addressing unfriendly practices. So JCAHO's approach appears to be based on the Saint Theory of Medicine. If you find evidence to the contrary, let us know. Perhaps they changed. Structures and habits capable of hiding crimes easily hide errors. So there will be no safety for patients until organizations like this look begin to look for the crimes.
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 and to ensure that doctors are competent. In fact it is set up to do the opposite of that (for example, see AMA Patients Voice). It is a membership organization that advocates for health care professionals and lobbies against the rights of patients. It would not make sense to communicate your complaints to them.
According to the July 21, 1969 issue of American Medical News in that year a psychiatrist disrupted the annual AMA House of Delegates meeting saying that “the AMA is a conspiracy against health, a menace to the nation’s health, maintains the ‘largest and richest lobby’ in Washington, D.C., fights against low-cost, high quality health programs and ‘created’ the health manpower shortage.”
According to the piperreport, the vast majority of physicians do not belong to the AMA.
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.
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.
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 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 kinds of organizations can create 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 (and no attention whatsoever to adverse events that are not errors). This patient safety institute's site states that they are "a resource for the healthcare professional." However, they do have a page for consumers with headings like "Questions Are the Answer—Getting Involved in Your Health Care," recommending that you ask the questions of the people caring for you. Apparently the belief is that caregivers provide selfless and accurate answers and do not underappreciate the downside of treatment and don't fail to have accurate data on their own success rates compared to other caregivers who might be much better at healing specific issues. Patients really need an organization somewhere they can call to get help.
I wrote to them on October 4, 2006, asking if they would respond to an injured patient asking for help. They never responded.
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.
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.
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.
The Semmelweis Society International
http://www.semmelweis.org/ is an organization set up to defend physicians and nurses from what it refers to as "sham peer review." They are yet another organization that believes that what is good for physicians necessarily is good for patients, at least according to what the founder said to me.
I once had an internet discussion (debate?) with Andrew Holley at that society. Among other things, he argued against disclosure of errors in medicine. He said that if errors were disclosed, there would be few physicians left standing in medicine because patients would avoid everyone who had errors. He said, "Even notable physicians who handle thousands of patients a year with an extremely low error rate would be avoided like the plague." (foodnoted here)
Patients only can shudder at the endless rationalizations health care professionals have for refusing to report what patients need them to report more than anything else. No one inside or outside of medicine can make decisions that make patients safe without knowing where they are not. But inside medicine there are these continual rationalizations to protect caregivers while imagining that doing so necessarily be good for patients.
The Semmelweis Society is set up to defend caregivers whose own peers have decided they are too unsafe to allow patients to be exposed to them.
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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.
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.
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Links to 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 (and Physician 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.
http://www.kevinmd.com/blog A wide ranging blog that sometimes reprints blogs by others, so it is a way to be put in touch with additional voices, although the patients' voice remains outside this sphere at this time.
An Ounce of Evidence
http://blogs.sph.harvard.edu/ashish-jha/ It bills itself as "The blog of Ashish Jha - physician, health policy researcher, and advocate for the notion that an ounce of data is worth a thousand pounds of opinion." A lovely thought and a blog worth reading.
http://community.the-hospitalist.org/ Robert M. Wachter, MD is Professor and Associate Chairman of the Department of Medicine at theUniversity of California, San Francisco He has written 6 books and 200 articles. What he blogs about is not the kind of help that an injured patient needs, and he speaks from the provider's perspective, but you can learn more about that by reading him.
http://epatientdave.com/ Dave deBronkart, known as e-Patient Dave, is a cancer survivor who writes about participatory medicine and argues that data about your health is your data and you should have a right to have it. He shares one of the perspectives of patients.
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The "links" pages on most patient advocate 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 official 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.
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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 he 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, they are not professionals. Healthcare professionals are not adequate advocates for patients either (frequently they unwittingly are the opposite). There is no phone number an injured patient can call to speak to a professional advocate for patients 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. None of them will help get records from caregivers who refuse to give them. None of them will help patients understand that they cannot be sued for reporting to an authority. There is no one to guide victims of abuse or error, no one to tell them what to do to help protect future victims.
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Activism without Understanding
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 may 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. There is so little understanding of how ineffectual laws are for guiding behavior in medicine.
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 for politics to fix things. New people jump straight to politics and to the 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 unsocial 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 in the matter of protecting itself them and from other victims like them.
Injured patients have not been through a training and education process like medical school and internship to get them marching in step in the way that caregivers do. Victims of sins, like sex abuse, have little use for discussions of errors. Victims of errors have little tolerance for discussions that paint some healthcare workers as not meaning well. So they don't work together. They don't even link to each other's websites. And newly injured patients continue to arrive unable to find anyone who can help them.
When the injured patients who run sites will not link to each other, injured patients 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.
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Patient Safety Intro quiz for fast modems
Patient Safety Intro quiz for slow modems
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American Iatrogenic Association - now defunct
http://www.iatrogenic.org/ They say that 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.
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.