The Empowered Patient

Every Patient Should Know Roger: Be your own advocate, question everything. Dr. Dean Edell: At some point, everyone of us will face some medical dilemma, whether it's weighing the pros and cons of a particular drug or deciding where to have life saving surgery. We do better, we come to the table prepared with information that every patient should know. Staying healthy is a challenge that takes eating right, exercising -- Roger: Trying to work on diet -- Dr. Dean Edell: -- and talking to your doctor. Male Speaker: Is this something I should do on own from time-to-time? Dr. Dean Edell: It gets confusing. Dr. Deanna Willis: There is so much about the healthcare system that's very complicated. Dr. Dean Edell: Complicated for you and your doctor. Roger: I check every page that you turn -- Dr. Dean Edell: Well, there always you can manage your end of the healthcare equation better, whether your problems are routine or life threatening. Female Speaker: They tell you to get there 15 minutes early and then you wait for like 45. Dr. Dean Edell: It's called the waiting room for good reason. Female Speaker: You never know, how long it's going to be? Dr. Dean Edell: But smart scheduling takes waiting off your list of complaints. Dr. Jim Jirjis: In general, offices are busy on Mondays, Tuesdays and Friday. Dr. Dean Edell: First, schedule your appointment for a Wednesday or Thursday morning. Second, ask the receptionist beforehand, how much time you will have with the doctor? Dr. Jim Jirjis: They arrive for a doctor's appointment, not realizing that they only 15 minutes and they have 15 problems. Female Speaker: How did you see today Vivian? Dr. Dean Edell: If you need more time, make two appointments. Finally, arrive prepared with a list of questions and printouts of Internet articles you want to ask about. Dr. Jim Jirjis: An educated patient coming to the doctor saying, here's what I have read, tell me what to think of this? The doctor often can put things in perspective. Dr. Dean Edell: It's especially important when facing a major medical crisis. Dr. Deanna Willis: If you feel like the doctor was telling you what to do instead of helping you make an informed decision, those are some signs where it may not be the best relationship for you. Roger: He is upset at the exam. He looks around, and he goes, you don't know how serious this is, do you? And I said why, I think I do and he was like, no you don't. He says, you got a year to live. Dr. Dean Edell: Roger Scamp heard those words four years ago from a specialist he went to for pancreatic cancer. Roger: And I looked at him and I said I am going to live from it. I am going to live through this. Dr. Dean Edell: But to do that, Roger had to fire that doctor and search for another. The mind boggling process that's only recently become a little bit easier. Dr. Barry Straub: You could get information about where you would go to have a dinner at a restaurant or what kind of car you might purchase, but in the health care industry that was not available. Dr. Dean Edell: Reacting to consumer demands, the federal government finally launched Hospital Compare, a website that allows you to evaluate hospitals, nursing homes and other care facilities. Dr. Barry Straub: It's a one resource among many resources. They should use again in deciding where they will seek care. Dr. Dean Edell: The website provide statistics on how often the hospital follows standard practices, something called process of care for example. Dr. Barry Straub: Patients who are going to have surgery should have antibiotics given to them, just prior to surgery. Dr. Dean Edell: Information is also available on outcome. Dr. Barry Straub: How good is the survival rate for group of patients who were treated for that condition. Dr. Dean Edell: It also suggests specific questions you should ask your doctors. Hospital Compare is part of a growing healthcare trend. Dr. Barry Straub: I have seen a phenomenal change over the last 3-5 years in all providers being willing to submit data that measures the quality of care. Dr. Dean Edell: But we are not 100% there. Hospital Compare doesn't yet provide data on all conditions, Cancer among them. Roger: The information would have been very helpful to me. Dr. Dean Edell: Survival statistics are available through the SEER Program of the National Cancer Institute and through the National Cancer Data Base, but it's statistical mumbojumbo for patient in crisis. Christopher Lis: This sort of database does not provide information on cancer treatment center outcomes, that are specifically linked to an individual center. So it's difficult for patients to use that information. Dr. Dean Edell: Hospitals themselves provide access to some information. For example, Sloan-Kettering in the Abramson Cancer Center at the University of Pennsylvania have extensive websites aimed at helping people with cancer make treatment choices. At the Sylvester Comprehensive Cancer Center, at the University of Miami, you can access a registry with statistics on the cancer they treat. Cancer Treatment Centers of America is currently making outcome data available on pancreatic, breast and lung cancer. Efficacy groups also provide valuable support teaming newly diagnosed patients with survivors who know what to ask doctors. Roger: The first thing I would say ask the guy how many people with stage for a pancreatic cancer have you helped and how longer they've lived? Dr. Dean Edell: It's rare to survive advanced pancreatic cancer. In fact, it was not lost on Roger who has lived well beyond the death sentence he first received. Roger: Everyday is so much more precious. The God is good.