Advocacy resources: Help is available

Most of us enter the world of hospital-based advocacy as beginners. We lack technical knowledge because we are not trained in medicine, or we lack personal knowledge because we have never before been an advocate or a patient.

Because we rarely have time to prepare ourselves, we would be wise to designate a section of our home library to reference materials. I recommend that a good home-based medical reference library include:

• a medical dictionary (containing terms and their definitions);
  
• The Pill Book (a home/layperson version of the Physician's Desk Reference);
  
• The Merck Manual of Medical Information (information on medical conditions);
  
• basic and advanced first aid manuals;
  
• Alternative Medicine: The Definitive Guide (information on treatments that are not considered "conventional" and typically are not reimbursed by insurance companies without agonizing effort); and
  
• my book (see tagline at end of article).

If you do not have time to read all these materials cover to cover, at least scan their tables of contents. While some of these books may not have a long lifespan due to continuous changes and advancements in medicine, they are a good place to start.

The Internet is much easier to keep current, and on it resides cutting-edge information. Caution is needed, but many sites can provide excellent resource material for anyone stepping into the role of advocate. Here are resources I have used and found to be extremely helpful. When available, both phone and Internet access information are provided.

As Werner von Braun said, "Research is what I'm doing when I don't know what I'm doing." And most of us start here!

Aging with dignity
The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person's needs—medical, personal, emotional, and spiritual. Five Wishes also encourages discussing your wishes with your family and physician. 888-594-7437; www.agingwithdignity.org/order.html

Caregiver.com
This site offers a multitude of materials for caregivers and a free online newsletter. The site also features articles from Caregiver Magazine, and hosts caregiver conferences and an online chat board. 800-829-2734; www.caregiver.com

Caringbridge.com
CaringBridge® is a nonprofit organization offering free personalized Web sites to those wishing to stay in touch with family and friends during significant life events. The site's mission is to bring together a community of care powered by the love of family and friends in an easy, accessible, private way. CaringBridge® users can quickly and easily create personalized sites that display journal entries and photographs. Well-wishers visit the site to read updates and leave messages in the guestbook. 651-452-7940; www.caringbridge.org

Discovery Health TV
Diseases and Conditions Encyclopedia: Information is provided about nutrition, medical tests, surgical procedures, and injuries. http://health.discovery.com/encyclopedias/otherdatabases.html

Family Caregiving 101
This site provides tools, skills, and information caregivers need to protect their own physical and mental health. It is a place for family caregivers to return as new levels of caregiving are reached. www.familycaregiving101.org

HealthGrades
This for-profit organization works to disseminate information on hospital patient safety to consumers, payers, and employers. For $29.95, you can receive a report on a specific doctor. The report will include education, background, board certifications, and state or federal disciplinary actions. Information is also available on hospitals and nursing homes. 303-716-0041; www.healthgrades.com

healthfinder®
This is a key resource for finding the best government and nonprofit health and human services information on the Internet. It's a service of the National Health Information Center, U.S. Department of Health and Human Services. www.healthfinder.gov

Hospital Compare
This site has quality measures on how often hospitals provide some of the recommended care to get the best results for most patients. You will see some of the recommended care that an adult should get when treated for a heart attack, heart failure, or pneumonia, or when having surgery. The www.medicare.gov Web site, under "Resource Locator," includes information on Hospital Compare, Physician Compare, Home Health Compare, and Nursing Home Compare. 800-633-4227; TTY 877-486-2048

Joint Commission on Accreditation of Healthcare Organizations
Select "For Accredited Organizations," go to "Quality Check," select "Search by Zip Code" or "Search by Name," and follow instructions. The reports take a long time to load. Unless you want details, all you really need to know is whether the hospital is accredited. 630-792-5000; www.jointcommission.org

Medscape Medical News
This is an online medical news board written by and for the medical community. Select "Newsletters" and determine which ones you are interested in receiving. When asked for your position in medicine, select "consumer/other." You can research specific medical conditions and receive updates as they occur in medicine and research.
www.medscape.com/medscapetoday?src=hdr

Patient Advocate Foundation
This national nonprofit is a liaison between patients, their insurers, employers, and creditors to resolve insurance, job retention, or debt crisis matters relative to their diagnosis through case managers, doctors, and attorneys. 800-532-5274; www.patientadvocate.org

People's Medical Society®
The goals of the society include placing previously unavailable information in the hands of ordinary people so they can make informed decisions about their own health care; investigating and exposing arrogance, incompetence, and greed in organized medicine; protecting the freedom to choose alternative providers of health care services; and creating an American health care system that is affordable, compassionate, and centered on the needs of people. 610-770-1670; www.peoplesmed.org

United Health Foundation
This nonprofit, private foundation supports health and medical decisions made by physicians, health professionals, community leaders, and individuals that lead to better health outcomes and healthier communities. The foundation has an annual report titled "America's Health: State Health Rankings." www.unitedhealthfoundation.org

LifeMine Personal Health Organizer
This is a system designed so you can organize and access your health-related documents and information. The health record organizer includes an informational DVD, a LifeMine USB system for personal and emergency transport, and a Web site member section where you can download and print additional pages for charts and history records. A complete package costs $97. 630-655-9555; http://lifemine.org

Web MD Health
This site provides helpful information on diseases and conditions, symptoms, a medical library, drugs and herbs, health tools, clinical trials, and Medicare drug benefits. www.webmd.com