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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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.
Go to Top
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 .
| 
