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Making Informed Medical Decisions: Where to Look and how to Use What You Find »

Book cover image of Making Informed Medical Decisions: Where to Look and how to Use What You Find by Nancy Oster

Authors: Nancy Oster, Darol Joseff, Lucy Thomas
ISBN-13: 9781565924598, ISBN-10: 1565924592
Format: Paperback
Publisher: Patient Center Guides
Date Published: July 2000
Edition: (Non-applicable)

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Author Biography: Nancy Oster

Nancy Oster is a medical writer, healthcare activist, Internet expert, and educator. She received her bachelor's degree from the University of California at Santa Barbara and has written several articles for medical and healthcare journals. Recently, Nancy was honored in the US House of Representatives for her role as the founding president of the Breast Resource Center of Santa Barbara. Nancy is also one of the founders of the South Coast Telecommunications Alliance, a forum for networking and information sharing on the central coast of California. Nancy has long been active in support of open and free information and access to healthcare and health information.

When Nancy is not writing, she is busy preparing gourmet meals, practicing yoga, creating numerous web sites, gardening, working on a designer quilt with friends, or traveling with her husband, Dave. Nancy and Dave have two grown children and two very active puppies. Nancy and Dave live in Santa Barbara, California.

Lucy Thomas, MLS, is currently the director of the Reeves Medical Library in Cottage Hospital, Santa Barbara, California. She completed her bachelor's and master's degrees at the University of Illinois in Champaign-Urbana, Illinois, before moving to Califomia. She is a distinguished member of the Academy of Health Information Professionals of the Medical Library Association and is on the editorial board for Medicine on the Net. Lucy has written numerous articles for professional journals and has been a speaker at professional conferences. She has long been an advocate for free access to information and for the rights of the healthcare consumer.

When she is not working, you can find Lucy skiing in the Sierra Mountains, sailing, hiking, gardening, attending a meeting of her book club, or taking a long beach walk with her husband, Bill, and their golden retriever, Brig. Lucy and her husband live in Santa Barbara, California.

Darol Joseff MD, is a board certified nephrologist and internist. He completed his medical degree at the University of Cincinnati School of Medicine and his fellowship and residency training at Harbor UCLA Medical Center, and at Santa Barbara Cottage Hospital. Dr. Joseff has written numerous articles for medical journals. He is also on the faculty of the University of Southern California Medical School and is active in teaching for the residency programs at Cottage Hospital. Recently, Dr. Joseff was named "Teacher of the Year" by the resident staff at Cottage Hospital. Dr. Joseff has a private practice specializing in nephrology in Santa Barbara and is on the medical staff at several hospitals. Dr. Joseff communicates with his patients and colleagues via telephone, email, listservs, and the Web.

When Dr. Joseff is not practicing medicine, teaching residents, or attending a Mac users' convention, he is at home with his beautiful wife, Janet, who is also a physician. They have two lively children and their free time is filled with activities such as soccer, hiking, beach walks, and travel.

Nancy, Lucy, and Darol teach an Internet Health Information course for the Santa Barbara Community College Adult Education program. They've been teaching the class for several years and have taken the class on the road as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.

Book Synopsis

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:

Tips for researching for someone else

Reading a journal article (and understanding what it says)

Making practical sense of statistics and risk

Understanding variations and advances in standard treatment options

Exploring complementary treatments

Locating a likely clinical trial

Making a powerful ally of your doctor

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.

Booknews

Another excellent resource in this series, providing tools for health- information seekers who face critical healthcare decisions. Guides readers through the world of medical information in print, on the Internet, and through contact with medical experts and other patients, and gives practical advice on reading and understanding medical journal articles and understanding variations in standard treatment options. Tells how to identify and evaluate alternative and complementary therapies, how to locate an appropriate clinical trial, and how to get information from doctors and nurses. Oster is a medical writer and healthcare activist. Thomas is a medical librarian. Joseff is a nephrologist and internist in private practice. Annotation c. Book News, Inc., Portland, OR (booknews.com)

Table of Contents

Forewordxi
Prefacexiii
1.Preparing for Research1
Reasons to research1
Asking your doctor for information4
Communicating effectively4
Understanding your diagnosis8
Prioritizing your research12
Identifying your range of options13
Getting to know your medical team15
Knowing your own interests and limitations17
Managing your time and resources19
2.Knowing Your Rights21
Your right to participate21
Informed consent24
Medical records26
The pragmatic health consumer37
3.Helping a Friend or Family Member40
Talking with the patient40
Determining your role44
Forming a partnership48
Talking with the doctor51
Accessing patient records53
Medical genealogy55
4.Identifying Information Resources57
Range of resources57
Medical textbooks58
Medical journals, peer-reviewed60
Non-reviewed medical journals61
Physician guidelines62
Consumer health books63
Consumer health magazines64
Medical newsletters66
Pamphlets and booklets67
Programs and abstracts68
Audiotapes and videotapes69
Computer databases and CD-ROMs70
News reports71
5.Gaining Access to Information Resources74
Libraries74
Bookstores78
Government agencies80
Professional associations82
Nonprofit organizations83
Patient resource centers85
Medical research centers86
Medical product manufacturers88
The Internet and electronic subscription services90
6.Effective Search Strategies96
Things to consider before you begin96
Research tools and scenarios97
Ways a librarian can help116
Hiring a professional researcher117
7.Understanding Standard Treatment Options121
Defining standard treatments121
How doctors select and recommend treatments122
Your own research128
Locating and contacting experts133
Reading guidelines that doctors use134
Clinical practice guidelines138
Clinical pathways140
Evidence-based medicine143
Standard treatmentschange constantly144
Identifying your own comfort level147
8.Researching Clinical Trials148
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 consider164
List of questions to ask about the trial170
How to find clinical trials173
Drugs and trials overseas180
9.Complementary and Alternative Therapies183
Defining CAM therapies183
Taking a new look at complementary and alternative therapies186
Considering an alternative or complementary therapy191
Concerns about complementary and alternative treatments196
Evaluating complementary and alternative therapies203
Talking with your doctor206
Expenses and insurance coverage208
Where to look for reliable information210
10.Support: Learning from Others213
Benefits of social networks213
The human perspective215
What kind of support do you want?216
Personal contacts217
Consulting counselors218
Accessing spiritual counselors220
Support groups221
Other healing group activities223
Online support groups224
Friends for support228
Obtaining and giving assistance229
Why find support?231
11.Evaluating and Using Statistics232
Why you should be familiar with statistics233
Misperceptions of risk235
Medical tests238
How disease rates are measured243
Risk calculation246
Using statistics to evaluate treatment options250
Reading a medical research paper258
What statistics can and cannot tell you267
12.Reviewing Information with Your Doctor269
Elements of a working relationship269
The doctor's role and contribution273
Your role and contribution277
Preparing for your appointment281
Exchanging information with your doctor283
Creating a plan of action286
Handling potential problems287
13.Making Your Decision293
Difficulties of medical decisions293
Components of a medical decision295
Decision, choice, and responsibility303
Arranging for others to carry out your decisions306
A.Patient Questionnaire313
B.Resources317
Glossary331
Notes347
Index355

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