This resource guide has been created to assist you in becoming advocates for your child and your family. The world of medicine is undergoing incredible changes in methods of treatment as well as the process by which care is delivered. Becoming informed and working as a partner with health care providers helps to insure that the best possible treatment and outcome will be achieved.
PURPLE INTERNET RESOURCES
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.
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.
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.
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.
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.
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.
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
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.
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.
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.