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)
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.
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.
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)
Foreword | xi | |
Preface | xiii | |
1. | Preparing for Research | 1 |
Reasons to research | 1 | |
Asking your doctor for information | 4 | |
Communicating effectively | 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 | |
Informed consent | 24 | |
Medical records | 26 | |
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 | |
Medical genealogy | 55 | |
4. | Identifying Information Resources | 57 |
Range of resources | 57 | |
Medical textbooks | 58 | |
Medical journals, peer-reviewed | 60 | |
Non-reviewed medical journals | 61 | |
Physician guidelines | 62 | |
Consumer health books | 63 | |
Consumer health magazines | 64 | |
Medical newsletters | 66 | |
Pamphlets and booklets | 67 | |
Programs and abstracts | 68 | |
Audiotapes and videotapes | 69 | |
Computer databases and CD-ROMs | 70 | |
News reports | 71 | |
5. | Gaining Access to Information Resources | 74 |
Libraries | 74 | |
Bookstores | 78 | |
Government agencies | 80 | |
Professional associations | 82 | |
Nonprofit organizations | 83 | |
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 | |
Clinical pathways | 140 | |
Evidence-based medicine | 143 | |
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 | |
Personal contacts | 217 | |
Consulting counselors | 218 | |
Accessing spiritual counselors | 220 | |
Support groups | 221 | |
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 | |
Medical tests | 238 | |
How disease rates are measured | 243 | |
Risk calculation | 246 | |
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 | |
A. | Patient Questionnaire | 313 |
B. | Resources | 317 |
Glossary | 331 | |
Notes | 347 | |
Index | 355 |