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It's no secret that millions of us are more involved in our own health care decisions—whether we want to be or not. We may be looking for the latest advance that might give us an edge in survival; looking for complementary treatments to help a chronic condition; investigating whether a treatment recommendation is good medicine or cost-cutting; studying to understand what the doctor told us in our allotted ten- minute visit; or trying to understand if a media story or ...
It's no secret that millions of us are more involved in our own health care decisions—whether we want to be or not. We may be looking for the latest advance that might give us an edge in survival; looking for complementary treatments to help a chronic condition; investigating whether a treatment recommendation is good medicine or cost-cutting; studying to understand what the doctor told us in our allotted ten- minute visit; or trying to understand if a media story or pharmaceutical ad applies to our situation.
However, we're starting our search without much context of what we're looking for or understanding of how we might make best use of the array of resources. Making Informed Medical Decisions illuminates the process. Its subject matter includes:
Authors Oster, Thomas, and Joseff offer the shared viewpoints of patient advocate, medical librarian, and medical doctor—each of whom is dedicated to teaching and empowering. Stories from dozens of patients and family members looking for their own answers are included.
Authors Oster, Thomas, and Joseff offer the shared viewpoints of patient advocate, medical librarian, and medical doctor--each of whom is dedicated to teaching and empowering. Stories from dozens of patients and family members looking for their own answers are included.
Written so anyone can access the wide array of information available, either through print material, the Internet, medical personnel, or other patients, guidelines for evaluating what is found are provided. Knowledge of patient rights, knowing how to help a family member or friend, being able to identify resources and access them using effective search strategies are included. Hypothetical questions are posed, "What are the side effects of blood pressure medication," for example, and the reader is walked through the research process. Included for each hypothetical are the questions a medical librarian might ask prior to beginning a search, places to start looking for information, in this case Medline Plus, and tips for searching. Specific things to look for are mentioned; in the case of blood pressure medication, the reader is directed to look carefully at the numbers of people in each study and where the studies took place. Keeping track of the pros and cons of taking blood pressure medication, having copies of the relevant information, and noting the sources of the information to be used again are useful for future reference and for the physician.
Four chapters are devoted to treatment options, learning how to cope and ways to get support. The final three chapters explain how to use the statistical information available and how to reach personal treatment decisions. All chapters are briefly introduced and are filled with quotes from people who have been patients and understand the process. The voices of the people, both patients and health care professionals, are helpful additions to the factual information.
In addition to chapter notes and a glossary, two appendixes are included: A is a patient questionnaire designed to assist in the initial research process; B is an impressive list of resources for access to organizations, publications, and Websites.
The authors have met their goal of helping consumers to be informed when making health care decisions. Knowing that ultimately it is the patient who must be making the decisions that affect all aspects of his or her life, this book will offer hope and opportunities to access the best information currently available.
In this chapter, we go over standard treatment options-what they are and where you find them. We cover the various forms that standard treatment can take and how to look critically at each. You will find some guidelines and questions you can ask so that you can determine for yourself whether the standard treatments seem appropriate to you.
Those publishing the standard treatment options maintain the concept of "proven effectiveness" in producing those treatment options. By gaining an understanding of what is or is not considered effective standard treatment, you have a basis for your own medical choices. You also gain a foundation for research into various alternative therapies and/or clinical trials.
There is no single standard used for developing treatment options other than generally acknowledged proven effectiveness or best evidence of a positive outcome. The treatment recommendations that are based on large, long-term studies are stronger. Those that have incorporated important follow-up of the patients receiving the treatment are stronger still. One such study is the Framingham Heart Study that has spanned the past 50 years.2 The Framingham study identified risk factors for heart disease such as high cholesterol, high blood pressure, and smoking that have all become standard guidelines today. Because the study has gone on so long, it has been able to include offspring of the initial subjects and even addresses the genetic component in heart disease. Smaller studies, not subject to review or subsequent tests of the conclusions, will rarely evolve as standard treatment. Standard treatments also vary from one country to another as well. It may be beneficial for you to compare treatments of other countries in order to determine the optimum treatment for yourself.
A woman who has been struggling with a cancer recurrence has been comparing cancer treatments in the United Kingdom to other countries:
Doctors select among treatment guidelines, critical pathways, and "best evidence" of successful outcomes for their patients, based on proven effectiveness. However, there are always limitations. For example, guidelines are always evolving and a better treatment might not yet be considered the standard. Other factors, aside from effectiveness, also come in to play.
Additional criteria are used in determining standard treatment options. Costeffectiveness is one consideration, local norms are another, and limitations imposed by insurers and HMOs now all enter into the equation. Factors such as the patient's condition, the physician's particular medical expertise, and external limitations can all impact or restrict what is called "standard treatment."
Physicians want to choose the best option for each patient. If there are costrestraints imposed by insurance guidelines or HMOs, you would want to know this. Sometimes the outcomes and risks of more experimental treatment options are not very favorable and used only as a last resort. Some minor conditions, such as a sprained ankle may be painful, but the standard treatment is usually a verbal recommendation for nonprescription pain medication and an ankle wrap, but no formal treatment.
If your doctor recommends a certain therapy, you can ask if this is the standard treatment for your condition and what other treatment options exist. If your physician is recommending a nonstandard treatment option, you will want to know why that treatment has been recommended.
A doctor explains why he doesn't always prescribe balloon angioplasty, even when it may be the standard treatment:
One woman who found herself in the emergency room explains the need to act quickly:
At the hospital, there was a swirl of activity-people asking questions, blood drawn, x-rays taken, papers signed. I could overhear snatches of conversation between my family and the staff. I didn't know most of the people who poked and prodded. They told me it was severe appendicitis and I needed surgery right then. A doctor I had never seen before was to be my surgeon. All I could say was "okay - do it now!"
I always thought if I got sick I would investigate all the options and choose the best one and then choose the best doctor Well at 3 a.m. that morning I was just very happy to be in a good local hospital with a licensed physician readily available. Research on appendicitis was not on my mind. Later I discovered I could have had a severe infection or even died if treatment had been delayed even a short while.
Having seen many "miracle" cures abandoned because of unforeseen side effects, a physician offers this explanation:
It is all right not to immediately prescribe the latest treatment unless there are compelling reasons to do so. It's safer to await the "track record," especially since newer treatments are typically more expensive in dollars and potential risk than time-tested ones.
One malpractice lawsuit has more influence on medical practice than ten papers in prestigious journals.
|1.||Preparing for Research||1|
|Reasons to research||1|
|Asking your doctor for information||4|
|Understanding your diagnosis||8|
|Prioritizing your research||12|
|Identifying your range of options||13|
|Getting to know your medical team||15|
|Knowing your own interests and limitations||17|
|Managing your time and resources||19|
|2.||Knowing Your Rights||21|
|Your right to participate||21|
|The pragmatic health consumer||37|
|3.||Helping a Friend or Family Member||40|
|Talking with the patient||40|
|Determining your role||44|
|Forming a partnership||48|
|Talking with the doctor||51|
|Accessing patient records||53|
|4.||Identifying Information Resources||57|
|Range of resources||57|
|Medical journals, peer-reviewed||60|
|Non-reviewed medical journals||61|
|Consumer health books||63|
|Consumer health magazines||64|
|Pamphlets and booklets||67|
|Programs and abstracts||68|
|Audiotapes and videotapes||69|
|Computer databases and CD-ROMs||70|
|5.||Gaining Access to Information Resources||74|
|Patient resource centers||85|
|Medical research centers||86|
|Medical product manufacturers||88|
|The Internet and electronic subscription services||90|
|6.||Effective Search Strategies||96|
|Things to consider before you begin||96|
|Research tools and scenarios||97|
|Ways a librarian can help||116|
|Hiring a professional researcher||117|
|7.||Understanding Standard Treatment Options||121|
|Defining standard treatments||121|
|How doctors select and recommend treatments||122|
|Your own research||128|
|Locating and contacting experts||133|
|Reading guidelines that doctors use||134|
|Clinical practice guidelines||138|
|Standard treatmentschange constantly||144|
|Identifying your own comfort level||147|
|8.||Researching Clinical Trials||148|
|What is a clinical trial?||148|
|Who designs a clinical trial and why?||149|
|Why research clinical trials?||149|
|Are clinical trials safe?||154|
|How is a clinical trial structured?||158|
|Issues to consider||164|
|List of questions to ask about the trial||170|
|How to find clinical trials||173|
|Drugs and trials overseas||180|
|9.||Complementary and Alternative Therapies||183|
|Defining CAM therapies||183|
|Taking a new look at complementary and alternative therapies||186|
|Considering an alternative or complementary therapy||191|
|Concerns about complementary and alternative treatments||196|
|Evaluating complementary and alternative therapies||203|
|Talking with your doctor||206|
|Expenses and insurance coverage||208|
|Where to look for reliable information||210|
|10.||Support: Learning from Others||213|
|Benefits of social networks||213|
|The human perspective||215|
|What kind of support do you want?||216|
|Accessing spiritual counselors||220|
|Other healing group activities||223|
|Online support groups||224|
|Friends for support||228|
|Obtaining and giving assistance||229|
|Why find support?||231|
|11.||Evaluating and Using Statistics||232|
|Why you should be familiar with statistics||233|
|Misperceptions of risk||235|
|How disease rates are measured||243|
|Using statistics to evaluate treatment options||250|
|Reading a medical research paper||258|
|What statistics can and cannot tell you||267|
|12.||Reviewing Information with Your Doctor||269|
|Elements of a working relationship||269|
|The doctor's role and contribution||273|
|Your role and contribution||277|
|Preparing for your appointment||281|
|Exchanging information with your doctor||283|
|Creating a plan of action||286|
|Handling potential problems||287|
|13.||Making Your Decision||293|
|Difficulties of medical decisions||293|
|Components of a medical decision||295|
|Decision, choice, and responsibility||303|
|Arranging for others to carry out your decisions||306|
Many of our students shared some new search strategies or brought perspectives to the class that enriched us all. Lawyers, chiropractors, nurses, retired and active physicians, veterinarians, and patients facing everything from stroke rehabilitation to bone marrow transplantation have attended our classes and shared their experiences. By sharing their experiences, they constantly added to our own points of view.
One thing that was really helpful for us was that we, ourselves, look at medicine and medical information from many perspectives. Darol, a physician, sees medicine through the eyes of a direct provider in an era of major changes in the healthcare system. Lucy, a medical librarian, sees medicine from the point of view of an information professional supporting both providers and consumers. Nancy, a medical writer and founder of a breast health resource center, sees medical information from the perspective of a patient advocate. All three of us have had experiences as the direct consumers of healthcare. All three of us have also embraced the Internet as a revolutionary tool in the dissemination of health information-and, unfortunately, health misinformation. We wanted to share our insights and offer some reliable resources and evaluation guidelines for a wider audience than we could reach in our small classes.
We wrote this book for anyone who needs healthcare information and/or who is facing a healthcare decision. We know from personal and professional experience that facing illness is one of the most difficult things you will ever do. As a consumer of healthcare you wish to understand enough about your illness to make clear decisions with your doctor's help. We offer you some tools and some guidelines so that you can be truly "informed" whenever you make a health decision.
In our classes and in our daily working lives, we hear stories of frustration with "managed" healthcare. We hear about disappointing experiences in trying to learn more about a diagnosis or variations in treatment. We also hear many questions about how to find information on new and experimental treatments. In this book, we share our insights and experiences about some basic skills we use for information gathering and for the evaluation of that information.
Many of the Internet megasites of medical information are very reliable, but the Internet seems to have as many sites making fraudulent claims as those with legitimate information. Whenever time permitted, we staged contests in our classes to find an Internet health site with the most impossible claims. Collectively we found some doozies. We include evaluation techniques throughout the book to help you discriminate between valid and proven healthcare information and some exaggerated claim.
We also give directions for finding medical libraries, journals and bookstores, because all of the information you may need is not yet on the Internet. The information you need may be in the printed medical literature or available through direct conversation with a knowledgeable expert.
Throughout various sections of the book we have switched the pronouns "he" and "she" as well as "her" and "him." We've done this simply because we know that many doctors and other healthcare providers are women and many are men. This is also true of patients, of course. The use of "s/he" or other attempts to equalize coverage seemed too forced to us. Many of the conditions we discuss, such as prostate cancer, are gender specific, but most are experienced by members of both sexes.
The quotes come from physicians and other healthcare professionals as well as those who have been patients. They have shared their advice and support. The healthcare providers offer valuable guidance on effective ways to get what you need in the changing world of healthcare.
We want to give special appreciation to Linda Lamb, our editor at O'Reilly, and Shawnde Paull, editorial assistant. We also have been grateful for the support and assistance from the Brothers at Mt. Calvary, Musa Mayer, Catherine Thorpe, and the staff of the Reeves Medical Library.
The authors of both studies suggested the same solution: Give primary care doctors more training in treating serious diseases and in sharing decision making. This obviously will not work. Vow is the doctor who doesn't have enough time supposed to find more for additional training?
I suggest another model, a doctor-patient partnership. And the perfect vehicle for this partnership is the Internet. I am not recommending that we replace the physician with a computer, but rather that patients be encouraged to research their condition on the Internet. (I can hear my colleagues groaning that their patients are already coming in with stacks of printouts that they have no time to discuss adequately) But what if physicians and patients were to incorporate the Internet into the office visit in a systematic fashion? As I've learned from years of working with breast cancer advocates, no one is more motivated to become an expert on one disease than the person who has it. There is no question that a patient has much more time to spend at the computer screen than his or her doctor does. In fact, just the other day I heard about a colleague who admitted to his patient that he had actually learned something from the information on Paget's disease that she had downloaded.
Why can't doctors use this situation to their advantage? What if we consider the doctor-patient relationship a partnership where the doctor is a consultant? After the initial exam, patients are given the option of researching their condition, with certain web sites identified as being reliable. They then come to the follow-up visit and report what they found, and whether it has helped to shape their preferences for treatment. The patients are likely to have a much better understanding of their options and more realistic expectations for therapy. Together, doctor and patient can share both decision-making and responsibility This approach could be especially valuable for decisions affecting quality of life. The Internet has a discussion group, bulletin board, or chat about almost every condition known to man and woman. For example, tips for living with lymphedema--swelling of the arm after breast cancer surgery-are much more abundant on the Internet than in almost any medical textbook or consulting room. The power of the Internet is in the enormity of experience it encompasses.
The doctor's job is not to know everything but to come up with the treatment that is most appropriate for each patient. The Internet can be a great ally in this respect. It can help relieve the burden on the beleaguered primary care physician and give the patient more control over his or her medical destiny.
-Susan Love, MD
Author, Dr. Susan Love's Breast Book and Dr. Susan Love's Hormone Book Founder, SusanLoveMD.com
Adjunct Professor of Surgery, UCLA