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

by
Edition: 1st
Format: Paperback
Pub. Date: 2000-07-01
Publisher(s): O'REILLY AND ASSOCIATES
List Price: $19.39

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Summary

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.

Author Biography

Nancy Oster is a medical writer, health care activist, Internet expert, and educator. She received her Bachelors Degree from the University of California at Santa Barbara and has written several articles for medical and health care journals. Recently, Nancy was honored in the U.S. 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 health care 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. 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 as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.

Lucy Thomas, M.L.S., is currently the director of the Reeves Medical Library in Cottage Hospital, Santa Barbara , California. She completed her Bachelors and Masters degrees at the University of Illinois in Champaign-Urbana, before moving to California. She is a distinguished member of the Academy of Health Information Professionals of the Medical Library Association and 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 not working, Lucy can be found skiing in the Sierras, 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. 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 as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.

Darol Joseff, M.D., 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 awarded 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, 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 as far as the First World Conference on Breast Cancer in Kingston, Ontario, Canada and to other communities in California.

Table of Contents

Foreword xi
Preface xiii
Preparing for Research
1(20)
Reasons to research
1(3)
Asking your doctor for information
4(1)
Communicating effectively
4(4)
Understanding your diagnosis
8(4)
Prioritizing your research
12(1)
Identifying your range of options
13(2)
Getting to know your medical team
15(2)
Knowing your own interests and limitations
17(2)
Managing your time and resources
19(2)
Knowing Your Rights
21(19)
Your right to participate
21(3)
Informed consent
24(2)
Medical records
26(11)
The pragmatic health consumer
37(3)
Helping a Friend or Family Member
40(17)
Talking with the patient
40(4)
Determining your role
44(4)
Forming a partnership
48(3)
Talking with the doctor
51(2)
Accessing patient records
53(2)
Medical genealogy
55(2)
Identifying Information Resources
57(17)
Range of resources
57(1)
Medical textbooks
58(2)
Medical journals, peer-reviewed
60(1)
Non-reviewed medical journals
61(1)
Physician guidelines
62(1)
Consumer health books
63(1)
Consumer health magazines
64(2)
Medical newsletters
66(1)
Pamphlets and booklets
67(1)
Programs and abstracts
68(1)
Audiotapes and videotapes
69(1)
Computer databases and CD-ROMs
70(1)
News reports
71(3)
Gaining Access to Information Resources
74(22)
Libraries
74(4)
Bookstores
78(2)
Government agencies
80(2)
Professional associations
82(1)
Nonprofit organizations
83(2)
Patient resource centers
85(1)
Medical research centers
86(2)
Medical product manufacturers
88(2)
The Internet and electronic subscription services
90(6)
Effective Search Strategies
96(25)
Things to consider before you begin
96(1)
Research tools and scenarios
97(19)
Ways a librarian can help
116(1)
Hiring a professional researcher
117(4)
Understanding Standard Treatment Options
121(27)
Defining standard treatments
121(1)
How doctors select and recommend treatments
122(6)
Your own research
128(5)
Locating and contacting experts
133(1)
Reading guidelines that doctors use
134(4)
Clinical practice guidelines
138(2)
Clinical pathways
140(3)
Evidence-based medicine
143(1)
Standard treatmentschange constantly
144(3)
Identifying your own comfort level
147(1)
Researching Clinical Trials
148(35)
What is a clinical trial?
148(1)
Who designs a clinical trial and why?
149(1)
Why research clinical trials?
149(5)
Are clinical trials safe?
154(4)
How is a clinical trial structured?
158(6)
Issues to consider
164(6)
List of questions to ask about the trial
170(3)
How to find clinical trials
173(7)
Drugs and trials overseas
180(3)
Complementary and Alternative Therapies
183(30)
Defining CAM therapies
183(3)
Taking a new look at complementary and alternative therapies
186(5)
Considering an alternative or complementary therapy
191(5)
Concerns about complementary and alternative treatments
196(7)
Evaluating complementary and alternative therapies
203(3)
Talking with your doctor
206(2)
Expenses and insurance coverage
208(2)
Where to look for reliable information
210(3)
Support: Learning from Others
213(19)
Benefits of social networks
213(2)
The human perspective
215(1)
What kind of support do you want?
216(1)
Personal contacts
217(1)
Consulting counselors
218(2)
Accessing spiritual counselors
220(1)
Support groups
221(2)
Other healing group activities
223(1)
Online support groups
224(4)
Friends for support
228(1)
Obtaining and giving assistance
229(2)
Why find support?
231(1)
Evaluating and Using Statistics
232(37)
Why you should be familiar with statistics
233(2)
Misperceptions of risk
235(3)
Medical tests
238(5)
How disease rates are measured
243(3)
Risk calculation
246(4)
Using statistics to evaluate treatment options
250(8)
Reading a medical research paper
258(9)
What statistics can and cannot tell you
267(2)
Reviewing Information with Your Doctor
269(24)
Elements of a working relationship
269(4)
The doctor's role and contribution
273(4)
Your role and contribution
277(4)
Preparing for your appointment
281(2)
Exchanging information with your doctor
283(3)
Creating a plan of action
286(1)
Handling potential problems
287(6)
Making Your Decision
293(20)
Difficulties of medical decisions
293(2)
Components of a medical decision
295(8)
Decision, choice, and responsibility
303(3)
Arranging for others to carry out your decisions
306(7)
A. Patient Questionnaire 313(4)
B. Resources 317(14)
Glossary 331(16)
Notes 347(8)
Index 355

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