Making Informed Medical Decisions Where to Look and How to Use What You Find By Nancy Oster, Lucy Thomas, and Darol Joseff, MD 1st Edition July 2000 (est.) 1-56592-459-2, Order Number: 4592 400 pages (est.), $17.95 (est.)

Preface

The inspiration for this book came from the students in our classes for Santa Barbara City College Adult Education. The class is ambitiously entitled "Healthcare Information on the Internet." We learned a great deal from the wonderful students of all ages who have attended our classes over the last few years. We learned that the changes in healthcare delivery have made the traditional "patient" a more proactive consumer of healthcare. Some of our students are healthcare providers, some are dealing with serious illness, and a few just want to learn some new techniques for finding information.

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.

Why we wrote this book

In each class evaluation, the students consistently told us two things. The first was that the most valuable things they had learned were the critical skills for evaluating medical information. The second thing they told us was that they wanted a longer class with more information. Since all three of us had other full time occupations, our response to their requests was to write this book.

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.

What this book offers

This book presents an introduction to the world of medical information--in print, on the Internet, and through contact with medical experts and other patients. We direct you to the many places you can find medical information from bookstores and libraries to the Internet and support groups. We also offer you, the consumer of healthcare, some guidelines so that you can evaluate the information you find and participate more actively in your own healthcare decisions.

How this book is organized

The book is organized in four sections. The first three chapters deal with preparing for research, understanding your rights, accessing medical records, and special things you need to know about helping a family member or friend. The next three chapters list the types of resources that are available, where to find them, and how to use them. Chapters 7, 8, 9, and 10 cover the range of treatment options from standard to experimental treatment and from complementary and alternative treatment to learning coping skills and getting support. Finally, in the last three chapters, we cover how to decipher the statistics and risks related to various treatments, how to work with your doctor, and how to come to your own decision.

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

We interviewed many, many generous and wonderful people whose poignant stories are distributed throughout the book. The perspectives of those who have "been there" are invaluable to understanding the healthcare process. The information they share is also valuable as an example of how each person dealt with a serious condition. We, and they, hope that their experiences give you guidance if you are ever confronting serious healthcare decisions for yourself or for a loved one. The stories are genuine, moving, and from the heart of each of the people we interviewed. Those who shared their experiences are from all walks of life and all parts of the country--and even the world.

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.

A word about the Internet

While this book is about all formats for health information, we know that the Internet has become a major force in expanding access to all types of medical information. We assume our readers will have basic skills in accessing and using the Internet. We also assume that you can find a web site when you have the URL or web site address and that you understand how a search engine works. There are many classes and books that can help you acquire these basic skills. Some of the resources listed at the end of this book may also help. Current surveys show that a high percentage of the population now has access to the Internet. Based on these statistics, you can probably find a friend who can guide you to any of the Internet sites or search strategies mentioned in this book.

Acknowledgments

We wish to thank all of our reviewers, technical advisors, and all of those who generously shared their time and their stories:

Robert F. Anderson; Dianne Armitage; Kathryn Ball; Dell Barden; Albert Baroni; Judy B. Blanco; Barbara Brenner; David Broad; Loren Buhle; Donna Burr; Anne Cameron; Catherine Carpenter; Kate Carter; Mary Jane Caswell; David Culler; Kay Deeney; Rachel Doctors; Ron Doctors; Jo Duffy; Kirsti Dyer, MD; Stan Eisele; Barbara Essex; Lynn Fay; Rosemary Fitzgerald; Karen Frischmeyer, DVM; Patricia Funerton; Venkatesh Ganapathi; Bernard Glassman; Pat Glenwinkel; Karen Grace-Martin; Nadine Greenup; Janie Grosman; Fred Glenwinkel; Corinna Gordon; Ruth M. Gubits; Brother Lawrence Harms; Yashar Hirshaut, MD; Selene Hopkins; Stephen Hosea, MD; Marian Jean; Holly Principe Joseph; Nancy Keene; Charlotte Jurehn-Lewis; Frederick C. Kass, MD; Louise Keeler; Pam Laird; Molly Long; Tom E. Long; Susan Love, MD; Laurie Lyckholm, MD; Andrea Mankoski; Marilyn Chambers McEntyre; Steve McIntosh; Sara McKenna; Ann McKibbon; Rochelle Minchow; Sherry Morez; Kathleen Morgan; Joe Mortz; Laurie Moser; Sharon Multhauf; Sara O'Donnell; Julie Ohnemus, MD; Michelann Ortloff; Dave Oster; Bill Pickthorn; Janet Pickthorn, MD; Cheryl Parrott; Isabelle Patton; Gary Ponto, MD; Cissy Ross; Heidi Sandstrom; TB Scanland; Gail Shannon; Marilyn Shaeffer; Lucy Sherak; Susan Shiras; Jef Short; Lou Smitheram; M. Steele; Mike Stephenson; Larry Stevens; Doug Sweet; Nancy Sweet; Betsy Thaggard; William R. Thomas; Katherine Trisko; Linda Walsh; Lyne Van Houten; Henry Weaver; Mary E. Weaver; Barbra Wiener; Nancy Wilczynski; Alison Okada Wollitzer.

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, the previous author, and the staff of the Reeves Medical Library.

A final note

Our profound hope is that this book is useful and will assist you in finding the information you need. We understand that both the fields of medicine and that of information are changing constantly. We designed these guidelines with change in mind and with the expectation that they will accommodate change and remain a valuable tool.

We share our sincere encouragement and best wishes with you, our readers.

Disclaimer

The material presented in the patient vignettes represents those individuals' unique experiences. This information should be interpreted cautiously since their decisions may not be best for you. This book is not intended to replace discussion between you and your physician or caregiver.

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