Patient Guide
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Road Map To American Health Care
  •  You The Patient
  •  Who Pays For You
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  •  Who Takes Care Of You

Tips For The Consumer
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Questions For Candidates

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Tips From The Experts

(Advice excerpted from interviews)

Dr. Mark Chassin, Mt. Sinai Medical School
Former New York Health Official

  • Seek out information on health care quality. One reason that people know very little about that kind of quality of care is that there isn't very much information that they have easy access to. Another is that this is a relatively new field of study in both science and in practice in terms of improving it. So we've had a relatively short period of time to talk to consumers about quality of care.

  • Expect and demand more from your health care. The reason we're not getting performance in health care that is as good as air travel is a list as long as your arm and it starts with the public expectation. We don't expect health care to be as safe as air travel; we haven't demanded it. We don't pay health care institutions to produce excellence. We pay either health care workers to produce services or we pay them a fixed rate to take care of patients on a monthly basis or yearly basis. We haven't figured out a way to pay health care to encourage excellence.

  • Ask your employer to consider quality when choosing a health plan. I think employers are another part of the problem. The vast majority of private employers have demanded low premiums from their agents, managed care companies, and that's what they've gotten. They have not demanded excellence in quality. Now when you talk to some of these employers … and ask them, well why don't you build quality improvement and quality measurement into your health plans? One of the most frequent answers I get when I ask that question is, 'well my employees don't demand that; they want lots of choice, they want low premiums, and they don't ask me to build quality into those programs.' So we have another little chicken and egg problem here that really requires both sides of that equation to step up to the quality plate and recognize that quality improvement is something that we're all going to have to invest in if it's going to occur.

David Mahon, Kaiser Patient

  • Take charge of your own health care. Nobody cares about you as much as you do. No matter how dedicated your doctor is, your doctor is not with you 24/7.

  • Find an insurer that you can afford.

  • Then find a good doctor within your health care system who you can work with, who you feel comfortable talking to. You have to be able to tell that doctor everything, and trust that that doctor is going to talk to you reasonably. If you are part of that process, you have much more likelihood of getting the best care because you can give the doctor all the facts that they need to make the best educated guess that they can.

Dr. Brent James, Quality Improvement Expert

  • Make sure, as a patient, you understand your treatment process. This was amazingly simple. This was having patients, as they measured their blood sugar levels each day, instead of having them write them down as a list of numbers in a little notebook, having them plot them on a graph. And what it does is it allows the patient to better relate their own behaviors, diet, exercise and use of a drug, like insulin, to control their blood sugar levels back to the level. And we found when we gave them that better tool, just that better graphing tool, for the vast majority, not for all but for about 90% of our patients, their own control of their disease improved markedly.

  • Patients need to change what they look for and expect from what they consider quality. The fact is that patients look at what we call service quality. Interestingly they don't look directly at medical outcomes. They ask that physician or nurse to tell them what to expect in the context of that individual interaction. Consumers do have ways of knowing about outcomes in the health care system. Yet, even when consumers do have those data in a simple, understandable form, we know that they do not use them to choose either a physician or a hospital or a health plan.

John Sokoloski, Kaiser Patient

  • Become involved in your own health care. Since I became involved in my own health care and became very active and proactive in it my health has done nothing but improve. And then every now and then when I meet with my doctor she points that out.

  • But manage your stress level. You can't just sit back and expect that your body's going to heal itself. It's a mind over matter thing.

Dr. Thomas Bodenheimer, Health Care Scholar and Family Physician

  • Keep in mind that a primary care physician is really in a dual role and is seen in a very complex light by the patient, one, as someone who can really help them to coordinate their care and another as someone who will stop them from getting the care they need.

  • Be aware that if your doctor sends you to a specialist that is not approved by your HMO, you may end up getting a bill for it because the HMO only will pay for the approved list of specialists, drugs, whatever it may be.

  • Understand the priorities of your health care organization. I think that in order to treat chronic illness, you have to have a health care organization that has a certain philosophy of certain values which are: we care about taking care of chronic disease as best we can, and we have to worry about money, but money comes second. If you have an organization that is worried about Wall Street and the stock market and money comes first, they are only going to take care of chronic disease if that saves them money, and most chronic disease programs don't save money maybe until 5 or 10 years in the future. You need an organization that has the philosophy to really want to do it, and then you have to have systems, integrated systems, so that that organization can get it done. So, in my opinion, really the key issue is: what are the goals and the philosophy of the organization that will enable them to put a high priority on quality of chronic disease care over money?

  • Take care of your condition. In theory, doing very simple things to help take care of chronic diseases will, number one, improve the quality of care and help patients and, number two, will save money. Those simple things can keep people out of the hospital and out of the emergency room, and probably could ultimately save money for managed care organizations and for the health care system as a whole.

  • Be aware of the Medicare HMO revolving door. There is a concept that Medicare HMOs will bring in people who are healthy, and if they happen to bring in someone who becomes sick, they will figure out a way to have that person go out the door and go back into the general Medicare system, so that they end up with the healthiest Medicare patients. So the revolving door really is that sick patients go out the door and healthy patients go in the door.

  • There are non-emergency health care problems that can arise for someone who is uninsured. We have people come in. They don't have any insurance. We try to take care of them for $5 or $10, whatever we can possibly do. The problem is if they need lab tests, X-rays and so forth, we cannot deal with the bills on those because they'd have to go to the hospital to do that. So it's a huge problem to try to take care of people without health insurance.

  • Get active in health care issues. To me, this is a national scandal, and it should be like front page, every day in the newspapers, and if Congress and whoever is going to be the President doesn't do something about this soon, if the economy goes down, we're going to have 60 million people without any insurance.

Vivian Hannawalt, Cancer Patient

  • Know what you should be getting screenings for. I had no, no symptoms. I had no indication of any problem. They have these chronological charts. When you're 30, you're supposed to do this. When you're 40, you're supposed to do that and when you're 50 you're supposed to do that. And so one of the things in the chart says that if you're 50 you should be checked out for colon cancer with a sigmoidoscopy.

Arthur Levin, Center for Medical Consumers

  • Educate yourself about the facility in which you receive care. I don't think most consumers understand how important it is that they research not only the condition they may have, but who's going to take care of them. I mean doctors and hospitals. There's tremendous variation both in organizations, health plans, hospitals, and doctors in the outcomes that they get with exactly the same conditions.

  • Find out if there are any alternative ways to take care of your problem. There are more alternative treatments to choose among - drugs versus surgery, what drug, what surgery. So if you're not informed, if you don't educate yourself, you're really leaving yourself at the mercy of doctors to tell you what to do.

  • Be more proactive in demanding quality standards. "I don't think the public ever demanded the kind of accountability from medicine that it demanded from airlines or the auto industry, for example. The problem of safety is enormous. The Institute of Medicine reported just this past November that medical errors kill between forty-four thousand and ninety-eight thousand people a year in the United States. That means at the low end, forty-four thousand, it's the eighth leading cause of preventable death in the United States. That's a significant public health problem.

  • Look beyond good service to best practice. I think for many consumers quality is sort of a service quality issue. Was I treated when I called up for an appointment? Was the office nicely furnished? Did I have to wait a long time to see the doctor? Was there parking? Those kinds of issues; those are important issues - issues of convenience. But I think when people in medicine and health care research look at quality, they're talking about the practice of medicine. Is it best practice? Is what the doctor is doing most likely to lead to a good outcome or not? It's much sort of harder data and harder information, and I think most consumers don't think about those issues at all.

  • Consider how quality is measured. What I think of when I think of quality is the variation in outcomes, the variation in performance. Is a patient going to survive their surgery? Is a patient going to return to normal function after their surgery? Is a patient with a chronic condition getting the best possible care so they can live the best possible life available to them? Those are the measures of quality that I think are the important ones.

  • Find out how your provider does in comparison to others. If consumers are going to truly make an informed choice, am I going to have this cardiac procedure? And then having made that decision, where am I going to have it and who's going to be my surgeon? They can't possibly make an informed choice unless they have that kind of information. What we're talking about is your odds of surviving the surgery depending on which hospital and, probably even more importantly sometimes, which surgeon does the procedure. There can be a significant difference depending on which hospital or which surgeon does the procedure. And that's a risk that you can avoid if you know who's doing a good job and who isn't.

  • Advocate public disclosure. I would argue that the biggest lever for change that I can think of is public disclosure and public accountability and that the health care sectors, doctors and hospitals, will not do much about making their performance better unless we have public disclosure. We're where we are today with a tremendous problem with errors, tremendous variation in performance because medicine or the hospital industry never took quality seriously. Also, I think we live in a democracy and I believe this information, which is collected with public taxpayer money, should be available to the public that pays for it.

  • Take an active role in your own health care as a consumer. I think the role of the public in improving the quality of health care in America is to begin to demand more accountability from their health care system - that is from their doctors and their hospitals - to begin to demand that this information be available to them about all kinds of procedures and conditions and to begin to demand that they need to be partners, full partners, in the decisions that they make about their health care and their health outcomes. And they can only do that as informed consumers with this kind of information. Anyone who wants to get the best possible quality of care in America has to really become actively engaged in getting information about their condition, getting as much information as they can about performance; they have to know a lot to get good quality care. Part of that is due to the fact that care has become very complicated. It's become very invasive. So the benefits are greater, the risks are greater. And there are more alternative treatments to choose among - drugs versus surgery, what drug, what surgery. So if you're not informed, if you don't educate yourself, you're really leaving yourself at the mercy of doctors to tell you what to do. And I believe that's a dangerous state of affairs.

  • To get the best quality of care possible, first really educate yourself about the condition you have. You really have to do some research about its diagnosis, what are the alternative kinds of ways of taking care of the problem. That makes you a knowledgeable consumer in the sense that you have a way to begin to judge the advice you're getting from doctors and from other health care professionals. If you know nothing about heart disease, how in the world do you decide that heart surgery is the correct advice for you? You've got to have some basic understanding of what's going on before you can really make informed, intelligent choices.

Ann Albright, Diabetes Association Leader

  • Stay positive, adjust mentally - and stack the deck in your favor. This is with you every day, no vacation, no breaks. You have to deal with it every day. And you have to adjust to that mentality, and you have to be willing to try to stay as positive as you can and to realize that, you know, none of us have any guarantees. There are no guarantees for any of us, but you want to do all you can to stack the deck in your favor.

  • Question policies. After talking with my physician and diabetes educators we wrote to the health plan and we questioned that policy. And we demonstrated why [insulin pumps] should not be in that category of supplies. And they, indeed, agreed to cover the insulin pump in that they changed the policy.

  • Redefine your needs. I think you need to help people redefine convenience when you're talking about a chronic disease. I think some people think that insulin pumps are just convenience items. When you have to live every day with this disease - no breaks, no vacation - and you have to pay attention to these things all the time, convenience takes on a whole different meaning. You have to take advantage of those things that help make it easier for you.

  • Keep in mind that it's in the best interest of health plans to help people with diabetes take good care of themselves because it will be less costly in the long run.

  • Look out for your own best interests. Make sure that you are working with your health care professionals and that you're doing it because you are clear that it's in your best interests, and your health care professional is helping you to understand what's in your best interest.

  • Evaluate your options. I think there are lots of choices of things that people could be on. And I don't think that I need to be on every single, solitary thing that's out there. I think I need to look at what's out there, what's in my best interest as somebody with diabetes and make sure I'm getting those things.

  • Educate yourself. I think without question, when you live with a chronic disease, you need to learn as much as you can about your disease and be your advocate. You have to learn about your disease so that you can be in a good situation to fight, if need be, for the things that you need for your health.

Dr. Donald Berwick, Institute for Health Care Improvement

  • Create an environment that is not conducive to errors. You don't make an airplane safer by yelling at pilots not to crash. [Make] it harder and harder to do the wrong thing and easier and easier to do the right thing.

  • Be aware that more is not always better when it comes to health care. The public needs to understand something. Health care…can hurt you. The drugs we give, the cuts we make, even the information we supply has its own burden. We've been in an environment in which the assumption is more is better, and it's not true. More hurts. And we've got to be really smart, as a public and a profession, in knowing exactly what we should add to the system and what isn't worth the added toxicity. It's not a cost issue, it's a risk issue. Let me give you some examples. We know a lot about how to use antibiotics. We know that for ear infections we should use simple antibiotics, not complicated ones. And yet we have research study after research study that shows that 30 or 40 percent of children with ear infections are getting advanced, toxic, expensive antibiotics way beyond what they need. That's a 30-/40-percent gap between what we do and what we know. We know that for some surgical procedures 20 or 30 percent of the patients who get that operation—I'm talking about hysterectomies, forms of endoscopy, looking through tubes at your organs—that these are overused by 20, 30 and 40 percent compared to what we understand scientifically should be done. There are very big gaps here.

  • Be an informed consumer. We actually know, from research, that the more involved, the more information a patient has, the better their outcomes will be.

Jay Lubbers, AIDS Patient

  • Choose your primary care physician carefully. In my opinion, one of the most important aspects of my HIV care is having a primary care physician who is someone that I like and I trust, but also who is very knowledgeable, very experienced, is well-connected with drug trials and the current research. And that isn't always so easy to find. I've had some physicians who didn't pay close attention, who didn't take good care of me, and who weren't up on the latest research, who didn't know what alternative therapies were available and I felt like I lost ground during those times. So, by experience I've learned that a primary care physician is probably the most important aspect of my health care, one who's well qualified and who I trust.

Ginny Hamm, V.A. Attorney

  • Get a legal advocate if a medical error occurs. The first person I want to hear from is a malpractice lawyer. A good malpractice lawyer understands the law, they understand the concept of damages, and you can bargain with them and deal with them without worrying about breaking down a very carefully put together relationship, a fragile relationship like you have with a family. Lawyers don't have fragile relationships with each other. We know what to expect of each other.

  • Find out how your provider approaches risk management. I think the bureaucracy has to move away from one person who manages all of the risk issues in the medical center and have some sort of an integrated, diverse group that works these things out together. And that's what we're lucky to have. We didn't hire a risk manager because we believed that we should share the responsibility as a group. I have seen in VAs, sadly, that risk management can become a tiny little office where one or two people process paperwork and don't have time to go out and be interactive, they don't have time to meet with a doctor and a family to make sure the process goes smoothly. They don't have a team to support them.

Ken Dixon, Surgical Nurse

  • Find out if your health care providers are working as a team. It's a life threatening thing (heart surgery). So, if you can decrease the level of interpersonal friction and things that occur in other environments and bring it to level where, 'Hey, we're all here together. We all know each other.' It just runs so much more smoothly. If I were a patient coming in for this type of surgery-open-heart surgery-I would want to be assured that the people in the room worked as a unit and not as individuals coming in to perform their separate tasks. This is my body….I want to make sure I have the best possible chance of surviving this event.

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