Readings for Consumers

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Books

Berntsen, Karen J. The Patient’s Guide to Preventing Medical Error. Westport, Conn; Praeger Publishing: 2004. ISBN: 0-27598-230-0.
The author, a former nurse and paramedic, provides an in-depth review on the issue of patient safety for the consumer. Her text provides personal stories, vignettes and practical “how to” advice for readers who seek to understand the issue and take on a more proactive role in their health care.

Bogner, Marilyn Sue, ed. Human Error in Medicine. Hillsdale, NJ: Lawrence Erlbaum; 1994. ISBN: 0-80581-385-3.
This book is an excellent source for understanding the value of system analysis and human factors in relation to medical errors. Somewhat academic in nature, it provides an intelligent overview of the reasons why error happens and how the healthcare industry might think about it differently to improve the situation.

Boss, Pauline. Ambiguous Loss. Boston; Harvard University Press: 2000. ISBN: 0-674-01738-2.
Boss’ text is not about medical error itself but about living with a loss that may never be resolved. This book can help survivors cope with the possibility of never having an answer. Recommended for individuals whose family members may have been involved in a medical error.

Gawande, Atul. Complications: A Surgeon’s Notes on an Imperfect Science. New York; Picador: 2002. ISBN: 0-31242-170-2.
Gawande is a gifted writer and presents the complex and uncertain world of the surgical trainee in a view sympathetic to both patients and practitioners. Many of these chapters were originally written for consumer publications.

Gibson, Rosemary & Singh, Janardan P. Wall of Silence: The Untold Story of the Medical Mistakes That Kill and Injure Millions of Americans. Washington DC; LifeLine Press: 2003. ISBN: 0-89526-112-X.
Stories help underscore and translate the need for an increased attention to patient safety. Gibson and Singh show the effects of medical mistakes on patients and their families. The book is unique in that the view presented is that of the patient. Tips on how to improve the situation are included.

Gilbert, Sandra M. Wrongful Death. W. W. Norton & Company; Reprint edition: 1997. ISBN: 0-39331-516-9. The author helps to identify feelings and experiences surrounding accidental medical death. She presents it not as a single person’s mistake, but as the result of a series of small things that add up to tragedy. Readers who have experienced medical error will find solace in that their experience isn’t unique. The title is recommended for individuals who have been involved in a medical error.

Giller, Cole A. Port in the Storm: How to Make a Medical Decision and Live to Tell About It. Washington DC; LifeLine Press. 2003. ISBN: 0-89526-132-4.
The author provides specific examples of how patients should be incorporated into the decision-making process. Practical information gathering tips and patient stories bring the pearls he outlines to life.

Groopman, Jerome. Second Opinions. Penguin Books: 2001. ISBN: 0140298622.
The process physicians go through in making medical decisions and how patients can evaluate medical advice is outlined effectively for the lay reader. Goopman’s use of real life situations makes it very readable.

Norman Donald A. The Psychology of Everyday Things. New York; Basic Books: 1988. ISBN: 0-46506-709-3. An enjoyable discussion of how poor design can affect how well tasks are completed. It shines light on the ideas of people being set up to fail due to ineffective design. [Also printed as The Design of Everyday Things.]

O'Malley, John F. Ultimate Patient Satisfaction. Designing, Implementing, or Rejuvenating an Effective Patient Satisfaction and TQM Program New York; McGraw-Hill: 1997. ISBN: 0-78631-219-X
This book illustrates effectively what patient-centered health care is about. Through the eyes of a healthcare consultant who guides organizations toward building programs that focus on the patient, consumers can begin to understand where their expectations should lie for safe and effective health care.

Schneiderman, Lawrence J and Jecker, Nancy S. Wrong Medicine: Doctors, Patients, and Futile Treatment. Baltimore; Johns Hopkins University Press: 2000. ISBN: 0801863724.
This books deals with a very difficult subject for people to discuss in the age of great medical advancements. How much do we expend to keep individuals alive and at what point do we accept death? This book considers the patient and family within the context of medical ethics.

Segen, Joseph C, Stauffer, Joseph, & Wade, Josie. The Patient's Guide to Medical Tests. Everything You Need to Know About the Tests your Doctor Prescribes. 2002, Checkmark Books; 2nd edition: 2002. ISBN: 0816046522.
A reference guide providing the following information for the most commonly ordered medical tests: the test itself, the reference range, patient preparation, what abnormal values may signify, test procedures, and the approximate cost of each test.

Sharpe, Virginia A., ed. Accountability, Patient Safety and Policy Reform. Georgetown University Press: 2004. ISBN: 158901023X.
This book calls for a balanced public policy that creates systems capable of openness that deliver just compensation and humane treatment to patients and families who have suffered from harmful medical error. The text illustrates the compassion for the individuals in the health professions trying to make health care patient-centered and safe.

Wachter, Robert M. & Shojiana, Kaveh G. Internal Bleeding: The Truth Behind America’s Terrifying Epidemic of Medical Mistakes. New York; Ruggedland Press: 2004. ISBN: 1-59071-016-9.
Internal Bleeding’s strength is that it presents system errors in health care in a language that is engaging for the nonclinician. The narrative relies on the experiences of the two physician-authors who build stories into their account of the problems health care faces that affect safety. Readers should be aware, however, that it does not take into account the patient/family role in helping prevent errors, but it is an engaging read nonetheless.

Weinberg, Dana Beth, & Gordon, Suzanne. Code Green: Money-Driven Hospitals and the Dismantling of Nursing. New York, Cornell University Press; 2004. ISBN: 0801489199.
Code Green examines the restructuring of the patient care process following the merger of two medical centers and the effects this had on nursing care. It reveals two different styles of nursing practice, one patient-centered and the other not so much so. It illustrates how the public's “safety net” (the nurses) has been reduced and how that loss has added to the less than ideal situation the US healthcare system currently finds itself in.

Youngberg, Barbara J. & Hatlie, Martin J. The Patient Safety Handbook. Sudbury, Mass; Jones and Bartlett: 2003. ISBN: 0-076373-147-1.
This book provides an encyclopedic review of the development of the current thinking in patient safety. Chapters deal with both historical subjects and provide future direction for practitioners who aim to improve the safety of the care they provide.

Articles

_____. A Consumer’s Guide to Taking Charge of Health Information. Harvard Center for Risk Analysis, Harvard School of Public Health. Available at: www.health-insight.harvard.edu/guide.html. Accessed January 27, 2005 .

_____. Making the Right Choice. How to Avoid Medication Errors. Center for Outcomes Research and Evaluation New Haven CT.

_____. Medical Error and Patient Injury: Costly and Often Preventable. Available at: http://research.aarp.org/health/ib35_medical_1.html. Accessed January 27, 2005 .

_____. Prescription for drug safety. Consumer Reports 2003; 15(3)

_____. Sign on the Dotted Knee. Harvard Health Letter: 2003; September 28(11):7.

_____. Taking more prescription drugs than you need?  Consumer Reports on Health. July 2006;18:1-5.

_____. Talking with your doctor. A Guide for Older People. National Institute on Aging. Available at: http://www.niapublications.org/pubs/talking/index.asp. Accessed January 27, 2005.

Barry Thias, Bridget. Making medical fact-finding easy: Don't trust the Internet? These local experts will help. Dallas Morning News. April 17, 2007. Available at: http://www.dallasnews.com/sharedcontent/dws/fea/healthyliving2/stories/DN-nh_research_0417liv.ART.State.Edition1.430138e.html. Accessed: May 3, 2007.

Belkin L. Who's to blame? It's the wrong question. New York Times Magazine. 1997;15 Jun Sec 6:28-33, 44, 50, 63, 66, 70.

Berwick DM. Escape Fire: Lessons from the Future of Health Care. New York; The Commonwealth Fund, 2002. Available at: http://www.cmwf.org/publications/publications_show.htm?doc_id=221609. Accessed January 27, 2005 .

Brody JE. To protect against drug errors, ask questions. New York Times. January 2, 2007. Available at: http://select.nytimes.com/gst/abstract.html?res=F6081FF63D540C718CDDA80894DF404482. Accessed January 19, 2007.

Camarow A. Don’t Get Buried (in Information). US News and World Report. November 8, 2004;137(16):48.

Crawford- Mason C. Deming and Me: A lesson in managing your own health care. Quality Progress. September 2002. 45-48.

Delbanco T, Berwick DM, Boufford JI, et al. Health care in a land called PeoplePower: nothing about me without me. Health Expert 2001:4:144-150. Available at http://www.aezq.de/english/english/literature/pdf/dellbank2001.pdf. Accessed June 30, 2005.

Fischer M.O. When bad medicine happens to good people. The Oprah Magazine. May 2005:309-310, 312, 314, 316, 318.

Gawande A. When doctors make mistakes. New Yorker. 1999;74(41);40-55.

Gawande, A. On washing hands. New England Journal of Medicine. 2004;350;13:1283-1286.

Goeltz RJ. Be a Partner in Your Health Care. FDA Consumer. 2003; 37(3):40. Available at: http://www.fda.gov/fdac/departs/2003/303_word.html. Accessed January 27, 2005.

Joint Commission. “What Did the Doctor Say?:” Improving Health Literacy to Protect Patient Safety. White Paper. Available at: http://www.jointcommission.org/NR/rdonlyres/D5248B2E-E7E6-4121-8874-99C7B4888301/0/improving_health_literacy.pdf. Accessed February 27, 2007.

Meadows M. Strategies To Reduce Medication Errors: How the FDA Is Working To Improve Medication Safety and What You Can Do To Help.” FDA Consumer . 2003: 37(3):20–27. Available at: http://www.fda.gov/fdac/features/2003/303_meds.html. Accessed January 27, 2005.

Rados C. Drug name confusion: preventing medication errors. FDA Consumer. 2005; 39(4):35-37. Available at:
http://www.fda.gov/fdac/features/2005/405_confusion.html. Accessed July 21, 2005.

Trebilcock B. Not what the doctor ordered. Good Housekeeping. June 2005;240:67-68,72.

Tugend, A. Going to the Hospital? Don't forget to Pack a Nurse. New York Times. September 17, 2005. Available at: http://www.nytimes.com/2005/09/17/business/17shortcuts.ready.html. Accessed: October 7, 2005.

Contributors:

Mary Gillaspy, Health Learning Center , Northwestern Memorial Hospital
Roxanne Goeltz, Consumers Advancing Patient Safety
Mary Lankford and Marla Husch, Northwestern Memorial Hospital
Lorri Zipperer, Zipperer Project Management