PATIENT ADVOCACY RESOURCES
A GUIDE FOR PATIENTS AND THEIR FAMILIES

Healthnet: Connecticut Consumer Health Information Network 
Lyman Maynard Stowe Library 
  University of Connecticut Health Center
Farmington, Connecticut


 
Patient AdvocacyInternet Quick GuidesSelf Help GroupsMedical RecordsRights and PrivacyInformed ConsentChildrenWomenDisabilitiesEnd of Life Decisions This resource guide has been created to assist consumers in becoming advocates for their own health.  The world of medicine is undergoing incredible changes in methods of treatment as well as the process by which care is delivered to the consumer. Becoming informed and working as a partner with health care providers helps to insure that the best possible treatment and outcome will be achieved. 
 

The guide includes Internet websites as well as print resources. Although advertisements may appear on some websites in the Guide, the University of Connecticut Health Center Library makes no recommendations for these products or services nor endorses them.

Books listed may be available at your public library. If your library does not own a book you would like to read, the library may be able to borrow a copy for your use through the Interlibrary Loan System. In addition, Connecticut residents may borrow books directly from other public libraries within the state with their own town library card. 
 

Each book citation includes the book’s unique International Standard Book Number (ISBN), which identifies the book and is helpful when ordering a specific title.

Since this resource guide is a publication of Healthnet: Connecticut Consumer Information Network, a program of the Lyman Maynard Stowe Library, University of Connecticut Health Center, it includes Connecticut as well as national resources when they are available.

Some of the books on this resource guide are not included in the collection of the Lyman Maynard Stowe Library at the University of Connecticut Health Center.
 

PATIENT ADVOCACY


BOOKS

How to Survive Your Doctor's Care.  Pamela Gallin.  Washington, LifeLine Press, 2003. 234 p. (ISBN 0-89526-120-0).

An extremely compassionate, down-to-earth explanation of how to obtain the best medical care for yourself or a family member, written by a physician who vividly remembers the consequences of not asserting herself to her surgeon when she suffered complications from hand surgery. Includes discussions of the "Doctor's Eye-View of Medicine," the "invisible doctors" such as radiologists and pathologists who are essential to a patient's care, the process of selecting a physician. Explains why every hospitalized patient needs his/her own patient advocate and why it should not be your spouse.

Making Informed Medical Decisions:  Where to Look and How to Use What You Find.  Nancy Oster, Lucy Thomas, Darol Joseff, MD.  O’Reilly & Associates, Inc., Sebastopol, CA, 2000.  364 p. (ISBN 1-56592-459-2).

How to search for health information and gain access to information using different search strategies. The book includes sections on patient rights, clinical trials, alternative therapies, establishing a partnership with your physician, and working with your physician to establish the best treatment plan. The publishers of this book sponsor a related web site, Patient-Centered Guides, that has a great deal of information about specific medical conditions.

Special treatment. How to get the same high-quality health care your doctor gets. Kevin J. Soden and Christine Dumas. Berkley Books, 2003. (ISBN 0-425-19809-X).

Practical recommendations for selecting a primary care physician, a surgeon, and a hospital based on behind-the scenes advice that doctors follow. Interspersed with the personal medical care experiences of the authors: an emergency department physician and a dentist. Includes "ten rules doctors know about the ER..and you should too."

Working with Your Doctor:  Getting the Healthcare You Deserve.  Nancy Keene. O’Reilly & Associates, Inc., Cambridge, 1998. 357 p. (ISBN 1-56592-273-0).

This book addresses issues such as finding the right doctor, dealing with managed care, effective communication with health care providers, getting a second opinion, questions to ask about tests, drugs, surgery, and clinical trials, how to research the medical literature, as well as how to take action when you are confronted with a health care problem.

INTERNET WEBSITES

Agency for Health Care Research and Quality

This federal government website includes clinical practice guidelines for both the physician and consumer.  There is a link to a section entitled “consumers and patients” that gives information on health plans, prescriptions, prevention and wellness, as well as quality of care issues.

Patient Advocate Foundation

This is a private, nonprofit organization, founded to represent the interests of patients nationwide and dedicated to ensuring access to the highest quality medical care.  The group addresses problems between patients and their insurer, employer, or creditors and will help with insurance issues, job discrimination, and debt crisis matters related to an illness.

Health Research Group

Much of the information at this site requires purchasing a subscription, newsletter, book, or CD-ROM but some information is freely available.   One book, Questionable Doctors, gives information on actions brought against physicians in all 50 states.  Another book, Worst Pills, Best Pills, includes monthly updates in the form of a newsletter.

Patient Centered Guides

Information specific to certain disorders is available at this site with a focus on cancer. Several books are available for purchase and many of the volumes are summarized right on the website along with much helpful information. The section Life on Wheels has an extensive listing of disability specific groups, as well as specialized hospitals and equipment. Internet discussion lists are available as well.

Center for Medical Consumers

Advocacy information appears on this web page along with many current topical articles.  While the focus of this group is on New York State, much information is relevant on a national level.  The Center for Medical Consumers publishes a monthly newsletter, HealthFacts, which requires a subscription.

Smart Patient Guide

Brief, easy-to-read information on understanding your medical bills, your health insurance, end-of-life issues, selecting a family doctor, and related topics. From the American Academy of Family Physicians.

SpeakUP

Ten comprehensive, easy-to-read brochures written to help patients "speak up" to health professionals about their care to ensure that they receive safe, thorough medical attention. Topics include "How to Avoid Mistakes in Your Surgery," "Five Things That You Can Do To Prevent Infection," and "Know Your Rights." Published by the Joint Commission, hospital accrediting organization. Available in English and Spanish.

SITES FOR SPECIFIC DISORDERS

American Association of Kidney Patients

The purpose of this group is to assist patients and their families in learning more about kidney failure and to help them better cope with kidney disease both emotionally and physically, with the goal of resuming productive and satisfying lives.  Information on both dialysis and transplantation is included.

National Marrow Donor Program, Office of Patient Advocacy

The Office of Patient Advocacy of the National Marrow Donor Program helps patients with both the donor search and transplant process.  They provide a wide range of information, referrals, support and advocacy services.

Breast Cancer Legal Advocacy Initiative

The American Bar Association of Women in the Profession has established a legal resource for women with breast cancer.  It focuses especially on issues related to health insurance and includes such topics as obtaining insurance coverage for experimental treatments and reconstruction.

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INTERNET QUICK GUIDES

Choosing a Doctor

The American Heart Association gives tips on finding a qualified physician.

Talking To Your Doctor

Tips on how to effectively interact with your physician, from the National Eye Institute.

Questions to Ask Your Doctor

The American Heart Association provides a list of questions to ask your physician.

Managed Care

This online publication, from the American Heart Association, provides a discussion of managed care plans with an explanation of common terms as well as health care plans.

20 Tips to Prevent Medical Errors

This is a patient fact sheet from the federal Agency for Healthcare Research and Quality.

Your Guide to Choosing Quality Health Care

An online government publication form with sections on health plans, doctors, treatments, hospitals, and long term care. Adobe Acrobat software is needed on your computer to read one version of the publication online.

Questions to Ask Before You Have Surgery

A quick check list of questions to ask your doctor before scheduling surgery, published by the federal Agency for Health Care Research and Quality.
 

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FINDING OR FORMING A SELF HELP GROUP

BOOKS

The Self-Help Directory: a Guide to Connecticut and National Groups. Directory of the Connecticut Self-Help Network, New Haven, 
CT: Connecticut Self-Help Network, annual .

A listing of self-help groups throughout the state of Connecticut with information on national groups as well. Contact the Connecticut Self-Help Network at (203) 624-6982 for updates.

The Self-help Sourcebook: Your Guide to Community and Online Support Groups. Denville, N.J.: American Self-Help 
Clearinghouse, Northwest Covenant Medical Center, 2002. (ISBN: 1930-68300-6).

In addition to having listings of various self-help groups throughout the country, this publication has a section on starting a group in the community as well as information on finding online support or starting new online groups.  Updated version available online at: Self Help Source Book Online.
 

INTERNET WEBSITES

The Connecticut Clearing House

The Connecticut Clearinghouse is the state's resource center for information about alcohol, tobacco, other drugs, and related issues.  Links to self-help groups can be found here, especially those relating to mental health issues.
 

National Mental Health Consumers’ Self Help Clearing House:

Step by step instructions for forming a self help group including a “Self Help Tool Kit” with many ideas for groups, including how to raise funds and how to be an effective leader.

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MEDICAL RECORDS

BOOKS

Medical Records and the Law.  William Roach, Jr. and the Aspen Health Law and Compliance Center. Gaithersburg, MD: Aspen Publishers, Inc. Fourth Edition, 2006. 591 p. (ISBN: 0-7637-3445-4).

Written by an attorney, this volume contains detailed information on medical record requirements, documentation of consent, access to medical record information, mandatory reporting and confidentiality, the impact of managed care on health information, as well as a section on computerized medical records.

INTERNET WEBSITES

Your Personal Health Record

"How to Obtain and Transfer Copies of Your Health Records." Questions and answers from the non-profit American Health Information Management Association.

Patient Access to Medical Records/Connecticut

The Connecticut General Statutes outline the medical records law for doctors and other licensed medical personnel as well as the statutes for medical institutions. This question-and-answer webpage is from the website of the Connecticut General Assembly.

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PATIENT RIGHTS AND PRIVACY

 INTERNET WEBSITES

American Hospital Association: A Patient’s Bill of Rights.

Available in eight languages as a "plain language brochure," entitled "The Patient Care Partnership: Understanding Expectations, Rights and Responsibilities."

American Medical Association

While this is a site for physicians, it is a good source of information about what Congress and the federal government are doing that may affect our health care. The AMA's positions on advocacy and current legal issues are found in the Physicians' section of the website. Under the Patient Action Network section of the website's Health Care Advocacy Agenda area, there is an opportunity to register for receipt of updates on health care issues being considered in the federal and state legislatures.

Attorney General's Page

The Connecticut Attorney General's website includes a discussion of current health topics, including HMOs, Medicare, current Connecticut health legislation, and insurance issues as well as information on your rights when it comes to making health care decisions. There is also information about advance directives, living wills, and appointing health care agents.There are links to information resources and organizations.

Thomas, Legislative Information on the Internet

Information from the United States Congress on the latest legislative activity. This searchable site is a service of the Library of Congress.

Connecticut Elder Law

This site is a service of Connecticut Legal Services, Inc.  A list of rights under the Medicare and Medicaid programs can be found on this website.  While this site is aimed at the older population, there is a great deal of good information for persons of all ages.

Medicare 

From the federal government, information on Medicare eligibility, Medicare coverage, and Medigap programs. 

Health Privacy Project

This website is a project of Georgetown University. The site includes several full length articles regarding patient privacy. There are also links to explanations of federal law related to patient privacy, and details about each state's law regarding health privacy. Included is an explanation about how to file a privacy complaint.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) Page

Background information about the regulations and features of HIPAA, from the AARP, national seniors' advocacy organization.

Medical Record Privacy

The Electronic Privacy Information Center (EPIC) is a public interest research group in Washington. It was established in 1994 to focus public attention on emerging civil liberties issues and to protect privacy, the First Amendment, and constitutional values. This is their medical record privacy website.

Your Rights to Make Health Care Decisions.

Question and answer format, published online by the Connecticut Attorney General's office, discusses patients' rights in the decision making process in Connecticut, advance directives, and living wills.

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INFORMED CONSENT

Informed Consent

A detailed explanation of procedures and patient rights related to a patient's granting consent for treatment. From the website of the American Cancer Society.

A Primer for Physicians on Informed Consent

This discussion of informed consent is published online by Yale New Haven Hospital and is a part of a handbook on Issues in Risk Management.

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CHILDREN

Connecticut Parent Advocacy Center

Published by the CPAC, a "statewide nonprofit organization that offers information and support to families of children with any disability or chronic illness, age birth through 21," this site includes a legislative update and links to various disability sites. There is also an online list of the organization's resource collection about children with disabilities that includes fact sheets, pamphlets, books, and videotapes which can be borrowed.

Kids Counsel: Center for Children’s Advocacy

This site is sponsored by the University of Connecticut School of Law and serves as a resource for lawyers and legal advocates dedicated to improving the quality of legal representation for children in Connecticut. Included is a case library, legislative news, a list of legal resources, professional resources and placement as well as links to Connecticut legal websites, and other agencies and organizations within the state.

Office of the Child Advocate, State of Connecticut

The Office of the Child Advocate is an independent state agency established in 1995 to protect the civil, legal and special rights of all children in Connecticut, and to advance policies throughout the state that promote their well-being and best interests.

Partnering with Your Child's School: A Guide for Parents

Guidance for parents of children with special health or mental health care needs in communicating effectively with their child's school. What services to expect from the school, what to do if you don't agree with the school plans for your child, etc. Available in English and Spanish.

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WOMEN

BOOK

New Harvard Guide to Women’s Health.  Karen J. Carlson, Stephanie Eisenstat, and Terra Ziporyn. Harvard University Press. Cambridge, 2004. (ISBN 0-674-01282-8 hardcover, ISBN 0-674-01343-3 paperback).

Comprehensive, consumer-friendly guide to women's health issues.
 

INTERNET WEBSITES

National Women’s Health Network

An independent, membership-based organization that focuses its women's health advocacy efforts on universal access to healthcare and reproductive health. It provides analyses of women's health issues and monitors federal agency and industry actions. Its website provides fact sheets and position papers on current health issues as well as a newsletter.

Society for Women’s Health Research

The mission of this organization is to improve the health of women through research.  It works to increase public and private funding for research on women's health, to promote the inclusion of women in medical research studies, and to encourage the scientific examination of the basic biological and physiological differences between men and women and how those differences affect both health and disease.

The National Women’s Health Information Center

"The federal government source for women's health information." A variety of health topics can be searched.  There is a section on women’s health topics in the news as well as frequently asked questions about women’s health.
 

DISABILITIES

A Guide To Disability Rights

This page, sponsored by the National Council on Disability, outlines information on laws concerning the rights of the disabled. It includes addresses and phone numbers of agencies to contact for help with problems.

Americans with Disabilities Act Home Page

The U.S. Department of Justice provides this page with information on the law, mediation, and federal agencies, along with phone numbers and other contact information.

Office of Protection and Advocacy for Persons with Disabilities, State of Connecticut

This is an independent State agency created to safeguard and advance the civil and human rights of people with disabilities in Connecticut. Information on pending legislation and laws is provided along with a resource directory.   The agency will provide information, referrals, and consultations.  It also organizes assistance to local groups, and provides various types and levels of advocacy assistance.

TASH Disability Advocacy Worldwide

TASH is an international association of people with disabilities fighting for a society in which inclusion is the norm.

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END OF LIFE ISSUES

National Hospice and Palliative Care Organization

Information on discussing end of life issues with a loved one and information on how to find and select a hospice program.

American Pain Foundation

The American Pain Foundation is a nonprofit information resource and patient advocacy organization serving people with pain. The organization seeks to improve the quality of life for those suffering with pain by providing information and advocating against barriers to effective treatment.

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This resource guide was compiled by Lynda Grayson, Healthnet Special Projects Librarian. If you have suggestions for this list, please contact richetelle@nso.uchc.edu .


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Lyman Maynard Stowe Library
University of Connecticut Health Center
Farmington, Connecticut
The URL for this page is: http://library.uchc.edu/departm/hnet/advocacy.html
Last Updated: June 19, 2008
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