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NAVIGATING
THE HEALTH CARE SYSTEM
A RESOURCE
GUIDE FOR CONSUMERS
Healthnet: Connecticut
Consumer Health Information Network
Lyman Maynard Stowe
Library
University of Connecticut
Health Center
Farmington, Connnecticut
|
 |
This Guide is intended to assist
patients and their families who are selecting health care providers and
insurance coverage and want to gather background information to help them
in the decision-making process.
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.
Some especially informative books
which are out of print are included. They may be available at your public
library or your library may be able to borrow them from other libraries
through the Interlibrary Loan system. Connecticut residents may also borrow
books 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 Health Information Network,a program of the Lyman
Maynard Stowe Library, University of Connecticut Health Center, its focus
is on Connecticut resources when they are available. National resources
are represented as well.
EVALUATING HEALTH CARE
PROVIDERS
BOOKS
America's Top Doctors. A Castle Connolly
Guide. Castle Connolly Medical Ltd, 2007. 7th edition. (ISBN
1-883769-79-5 )
The physicians listed were selected by peer
nomination. The book is intended to focus on doctors with specialized clinical
skills, not necessarily those with prominent administrative titles. Listings
are organized by specialties and subspecialties of the American Board of
Medical Specialties, and then by geographic region of the country. Includes
an index by more specific "special expertise," as well as an alphabetical
list by doctors' names. |
Directory of Physicians in the United
States. American Medical Association, annual. 4 vol.
Brief biographical information on U.S. physicians,
whether or not the physician is board-certified. Includes medical school
attended, primary and secondary specialty, year of licensure, and type
of practice. Internet access is available at AMA
Physician Select/On-Line Doctor Finder .
Folio’s medical directory of Connecticut
and Rhode Island. Annual. Folio Associates. Folio Associates Inc.,
297 North Street, Suite 212, Hyannis MA 02601-5130. phone: 800/223-2233.
Alphabetical listings of physicians by name,
town, and specialty. Includes medical education, address and phone number,
and languages spoken.
Consumers' Guide to Top Doctors. Center for the
Study of Services, 2002. (ISBN 1-888124-13-X paperback)
Prepared by a nonprofit consumer organization
in Washington, D.C., this book lists more than 15,000 specialists and primary
care physicians in more than fifty U.S. metropolitan areas, including the Fairfield,
New Haven, and Hartford county areas of Connecticut. Physicians were selected
for inclusion by other doctors using a peer recommendation method. Includes
brief information about each physician, including address, medical school
and year of graduation, fields of board certification if applicable.
The official ABMS compendium of certified
medical specialists.
Annual. American Board of Medical Specialties.
1007 Church Street, Suite 404, Evanston, IL 60201-5913. 4 volumes.
A guide to physicians who have been awarded
certification by one of 24 national specialty boards. Name and geographic
indexes. Includes details on places and dates of internships and residencies
as well as medical school attended. Confirmation of certification may also be obtained
by phone by calling 1-866-ASK-ABMS or on the Internet at
American Board of Medical Specialties. Select "Is Your Doctor Certified?" Free registration
is required for searching this area of the website.
WEBSITES
AMA
Physician Select/On-Line Doctor Finder
The American Medical Association’s Internet
directory listing credentials of M.D.’s and osteopathic physicians. Searchable
by physician name or specialty.
American
Board of Medical Specialties
A website of the American Board of Medical
Specialties that allows the Internet user to search for information on
board-certified physicians online. The website explains the criteria for
certification. To confirm a physician's certification status, click on
"Is Your Doctor Certified?" Searchers are required to register at no charge. One
searching area verifies board certification when searched by physician’s
name. Verification is also available through the ABMS toll-free telephone
service by calling 1-866-ASK-ABMS (275-2267) and in the multi-volume print
form of the Directory.
Connecticut
Licensing Info Center
State of Connecticut Department of Public
Health licensing requirements for health-related professions--acupuncturists,
dentists, physicians, etc. This website also allows users to verify the
license status of Connecticut health professionals by typing the name of
a doctor, dentist, or other health care provider in the License Verification
area of the web page. Select "License Verification." The verification area of
the website is updated each business day.
Connecticut
Bureau of Regulatory Services
Connecticut Bureau of Regulatory Services
quarterly online report of disciplinary actions against health practitioners
in Connecticut. ("Regulatory Action Report") Requires Adobe Acrobat Reader
on computer for online display. Earlier quarterly reports also on Bureau's
website. Reports can be viewed and downloaded. Updated monthly.
Connecticut
Physician Profiles
In accordance with Connecticut Public Act
99-284, the Department of Public Health publishes Connecticut physician
profiles on the Internet. The profiles include physicians' biographical
and educational background information, board certifications, medical malpractice
history, and hospital disciplinary actions in all states.
National
Association for Home Care
Website includes information for consumers,
including
an online brochure entitled, "How to Choose a Home Care Provider." The
brochure discusses types of home care service, payment responsibility,
solving problems that may arise, patients rights. The Connecticut
Association for Home Care provides a searchable database of Connecticut home health care agencies on its
website.
Back
to Contents
EVALUATING HOSPITALS
BOOKS
American Hospital Association guide
to the health care field. Annual. American Hospital Association. Published by
Health Forum, an American Hospital Association Company. One North Franklin Street,
Chicago, IL. 60606-3421. (800) 242-2626.
Directory of hospitals in the U.S. arranged
by state. Information includes name, address, telephone number, services
provided, specialties, certification.
Consumers' guide to hospitals. Editors of Consumers' Checkbook
Magazine. Center for the Study of Services, 2002. 357 p. (ISBN 1-888124-12-1). 5th edition expected late 2008.
Hospital-by-hospital rating of 4,500 acute care hospitals in the United States with information on how doctors
rate the hospitals, inspector ratings, death rates and complication rates. An online version is available for a
fee at the Consumers' Checkbook website.
WEBSITES
American
Hospital Directory
Commercial website with hospital financial
data, statistics on medical services provided, as well as basic directory
information.
Best Hospitals
Rankings of hospitals published annually by U.S. News and World Report magazine.
Hospital
Compare
A nationwide hospital comparison tool published by the federal government's
Centers for Medicare and Medicaid Services. Select hospitals for comparison by location or hospital name.
Comparisons are based
on quality measures for treatment of heart attack, heart failure, pneumonia, and surgical infection prevention.
Results appear in a bar chart comparing the scores of the hospitals selected. The chart also includes the
comparable average score for all hospitals in the U.S. and in the selected state.
Hospital Connect
Hospital Finder feature of the website of the American Hospital Association
and other related organizations. Search by location or hospital name.
Joint Commission
on Accreditation of Healthcare Organizations
This website’s Quality Check feature supplies
details on individual hospitals’ performance ratings from JCAHO’s accreditation
reports. Internet user can view Performance Reports and compare institutions’
ratings. Includes an online guide,
"Helping You Choose The Hospital For You." The guide has specific questions to ask when selecting
a hospital.
Back
to Contents
COMMUNICATING WITH YOUR DOCTOR
BOOKS
American Medical Association Guide to Talking
to Your Doctor. Angela Perry, medical editor. John Wiley & Sons,
Inc., 2001. (ISBN 0-471-41410-7).
A nontechnical overview on how to communicate
effectively with your physician. Emphasizes the importance of the patient's
role in this process. The book points out that the physician relies on
the patient as the authoritative source of information on her symptoms
in order to make a correct diagnosis. The book discusses how to talk on
behalf of family members unable to speak for themselves. Suggests questions
to ask about tests and treatments a physician recommends. There are suggested recommendations to follow
when you are dissatisfied with your treatment and advice about when to
obtain a second opinion. Includes a glossary and a resources section with
information on advocacy organizations, health associations, and government
agencies.
Don't let your HMO kill you. How to wake
up your doctor, take control of your health, and make managed care work
for you. Jason Theodosakis and David T. Feinberg. Routledge, 2000.
(ISBN 0-415-92482-0).
A practical guide to obtaining competent medical
care within the limits and frustrations of the managed care system.Two
practicing physicians impart realistic advice on how to "win your doctor
over to your side" rather than do battle with her. The book includes
tips on how to have a productive ten-minute office visit by communicating
effectively with your doctor and how to build a partnership with your physician.
Essential Patient Handbook: Getting the Health Care You Need--From Doctors Who Know.
Alan B. Ettinger and Deborah M. Weisbrot. Demos, 2004.
(ISBN 1-932603-02-6).
Written by physicians who personally encountered a sudden, life-threatening illness,
this detailed guide shows great understanding of a patient's feelings and concerns when dealing with physicians
and the medical system. Among this patient-friendly book's strengths is its focus on helpful details: what
specific questions to ask when inquiring about test results and newly prescribed medications, a routine to follow
when making a phone call to your doctor's office, communicating effectively with your doctor during an appointment,
and the format of a routine medical exam. Included within most chapters are forms that can be copied and completed
on topics such as a child's medical history, managed care plan enrollment, questions about a new diagnosis,
personal and family medical history, and history of present illness.
How to Survive Your Doctor's Care. Get the Right Diagnosis, the Right
Treatment, and the Right Experts for You.
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.
Intelligent patient’s guide to the doctor-patient
relationship: Learning how to talk so your doctor will listen. Barbara
M. Korsch. Oxford University Press, 1998.(ISBN 0-19-512657-2).
Written by a physician who has studied patient-doctor
communication in depth, this compassionate book presents a balanced view
of both sides of the doctor-patient relationship. After explaining the
physician’s stresses, training, and needs as a means of understanding the
physician’s viewpoint, the author gives specific suggestions on communicating
effectively with one’s doctor.
Surviving modern medicine. How to get the
best from doctors, family, and friends. Peter Clarke and Susan H. Evans.
Rutgers University Press, 1998. (ISBN 0-8135-2555-1 hardcover, ISBN 0-8135-2556-X paperback)
Written by a professor and a researcher whose
work focuses on preventive medicine, this guide provides realistic, in
depth discussions of methods for eliciting treatment information and recommendations
from your physician, and on coping with acute and chronic illnesses. Thoughtful,
detailed advice on communicating with caregivers, friends, and relatives
when in need of help. Includes many relevant anecdotes that illustrate
book's suggestions. Extensive list of references to books and journal articles,
arranged by chapter. These references highlight the research upon which
the book's recommendations are based.
Working with your doctor. Getting the healthcare
you deserve. Nancy Keene. O'Reilly, 1998.(ISBN 1-56592-273-5)
A comprehensive "primer for patient empowerment"
that discusses finding a compatible physician, understanding the managed
care system process, effectively communicating with your doctor, your rights
and responsiblities as a patient, and researching the medical literature.
Practical, clearly explained advice, interspersed with illustrative anecdotes.
You: The Smart Patient. An Insider's Handbook for Getting the
Best Treatment. Michael F. Roizen and Mehmet C. Oz with the Joint Commission.
Free Press, 2006.(ISBN 0-7432-9301-0 paperback)
Practical information on selecting a physician, preparing for surgery,
safe use of medications, obtaining a second opinion, evaluating alternative therapies, and selecting
health insurance. Enhanced by health history and current medication sample forms that may be copied
for personal use. Written in humorous style by two physicians well-known to the public, and
illustrated with many cartoons.
INTERNET WEBSITES
Talking
with Your Doctor
From the National Library of Medicine's
MedlinePlus
consumer health website
. Links to online brochures from the federal government and national health
organizations on obtaining a second opinion, talking to your doctor, informed
consent, being an active participant in your healthcare, and related communication
topics.
Having Surgery? What You Need to Know.
A guide to specific questions to ask your
physician about the risks and benefits of recommended surgery, from the
website of the federal government’s Agency for Healthcare Research and
Quality.
How
To Talk To Your Doctor
Emphasis on the importance of building a "successful
partnership with your doctor." Suggestions for preparing for a productive
office visit. Questions to ask your doctor to assure that you have a clear
understanding of your diagnosis, the treatment recommended, and other treatment
options. On the website of the American Association of Retired Persons.
Back
to Contents
COMPARING MANAGED CARE PLANS
WEBSITES
A Comparison of Managed Care Organizations
in Connecticut. Booklet published by the State of Connecticut Insurance
Department. Phone (860)297-3862 for a copy or view on the
website
.
Requires Adobe Acrobat software for online
viewing. Compares Connecticut insurance plans by results of surveys of
quality measures such as provider turnover rate, percentage of primary
care physicians who are board certified, percentage of children in the
plan who received immunizations, etc.
Connecticut
Office of the HealthCare Advocate
State government service to Connecticut residents
with problems or complaints about their managed care insurance plan. For
assistance, Connecticut residents can contact the office via e-mail or
call toll free at 1-866-HMO-4446. The Advocate's office provides general
information about managed care plans, the referral process, and assistance
with specific appeals and grievances. The office's website includes specific
suggestions on composing appeal letters and communicating with a managed
care insurance company.
A
Consumer Guide to Handling Disputes with Your Private or Employer Health
Plan
A guide to approaching disputes with your
insurance plan, published jointly by the Kaiser Foundation and Consumers
Union. The seventy page report is accessible both in text format and PDF
version. Adobe Acrobat software is necessary for viewing the PDF version.
Introduction to the formal and informal grievance procedures. Profiles
of insurance details by individual states.
How
to Use Your Managed Care Plan Effectively: Questions and Answers for Families
with Children
A brief overview of the intricacies of health
insurance coverage and referrals from the website of the American Academy
of Pediatrics, the national professional organization of pediatricians.
National
Committee for Quality Assurance
Online, interactive health plan report card from National
Committee for Quality Assurance, a private, non-profit organization that evaluates
the quality of managed care plans. Can compare selected plans.
Questions and Answers about Health Insurance: A Consumer Guide
A brief overview about finding an appropriate
health care plan from the federal Agency for Healthcare Research and Quality.
Your
Guide to Choosing Quality Health Care
An interactive guide for consumers deciding
which doctors, health plans, hospitals and treatments to use. Produced
by the federal government’s Agency for Healthcare Research and Quality.
Specific questions to ask when rating doctors and services. Includes comparison
charts to complete.
Back
to Contents
UNDERSTANDING THE MEDICARE SYSTEM
WEBSITES
Medicare
Official website of the federal government Medicare website.
Details on Medicare coverage, options for comparing health plans and hospitals, and locating Medicare
participating physicians.
Medicare
Choices Program
Cooperative program of the State of Connecticut
and Area Agencies on Aging. Provides trained volunteer counselors to advise
Medicare recipients on health insurance options, including Medicare, Medigap,
HMO's, and Long Term Care Insurance. For additional information, contact
your area agency on aging by calling 1-800-994-9422.
Center
for Medicare Advocacy
P.O. Box 350 Willimantic CT 06226/ 1-800-262-4414
or 860/456-7790. Private, non-profit organization staffed by attorneys,
paralegals, a nurse, information management experts, and technical assistants.
Free or low cost legal advice and representation for elderly Connecticut
residents who wish to appeal Medicare denials.
Medicare
Rights Center
Phone 1-888-HMO-9050. National, nonprofit
Medicare consumer advocacy organization. Publishes informational self-help pamphlets
and booklets on Medicare-related topics. Publications may be ordered by
mail, phone, or online. Full text online for booklet, "Medicare Answers,"
under Medicare Basics category.
MEDICARE PRESCRIPTION DRUG PLAN
Information resources for assistance in selecting a Medicare RX Prescription Drug Plan
are provided by government agencies and by organizations.
The
Connecticut Department of Social Services website
includes links to brochures (such as "Choosing the Plan that's Right for You!") and to agencies that offer
guidance (including the CHOICES program with trained counselors at 1-800-994-9422 and the
federal Medicare office).
The website of the AARP, national
organization for retired persons, provides an online, non-technical booklet, entitled Medicare Prescription
Drug Coverage: What You Need to Know About. Free print copies, in Spanish as well as English, of this publication and the booklet,
The New Medicare Prescription Drug Coverage: Extra Help for People with Limited Income, may be ordered online at
the
AARP website
.
An even more basic, briefer explanation than the AARP publication, entitled Understanding the New Medicare
Prescription Drug Plan is available on the consumer health website of the
American Academy of Family Physicians.
Back
to Contents
OBTAINING HEALTH INSURANCE
ASSOCIATIONS AND SERVICES
BenefitsCheckUp
Lengthy, online questionnaire provided by the National Council on Aging for individuals
55 and older. Determines which private or government plans will help pay for prescription medications,
health care, rent, and other expenses.
Companies
with Approved Individual Health Policies
Published by the Connecticut Insurance Department.
A
Consumer's Guide to Getting and Keeping Health Insurance in Connecticut
Written by health care policy researchers
at Georgetown University, this online consumer guide describes health insurance
protections available to Connecticut residents under the federal Kennedy-Kassenbaum
law and under state laws. Under "Read the Guides Online," or "Print Out
a Guide," select "Connecticut."
Health Reinsurance Association
Phone 1-800-842-0004. Non-profit association
consisting of all Connecticut private insurance companies and HMO’s. As
the state’s high risk health insurance pool, it provides insurance to individuals
who were formerly covered under a Connecticut group plan for a year or
more.
Financial Assistance
Hyperlinks to financial assistance opportunities
from a variety of federal agencies and organizations. On the website of
the National Library of Medicine's
MedlinePlus consumer health information website.
Health Insurance Portability and Accountability Act (HIPAA)
Consumer-oriented fact sheet explaining the federal Health
Insurance Portability and Accountability Act of 1996 (HIPAA) which became effective April 13, 2003.
The act impacts privacy of patient records and other medical information.
Healthy
Start Program
A community-based Medicaid program that provides
free health insurance to pregnant women who meet the income eligibility
requirements for the program. Provides coverage for medical and dental
expenses during pregnancy and for sixty days after the end of the pregnancy.
Locations throughout the state are available to access this service.
HUSKY
Plan: Healthcare for Uninsured Kids and Youth in Connecticut
Comprehensive health care insurance plan for
Connecticut children up to age 19 who have no health insurance. Free or
graduated cost premiums based on family size and family income. Phone 1-877-CT-HUSKY.
Partnership for Prescription Assistance
An interactive website provided cooperatively by pharmaceutical companies and community groups to help patients
search for prescription drug assistance programs. Patient must type some basic information about prescription
drugs currently used, income, and eligibility for other drug assistance programs.
Back
to Contents
ORGANIZATIONS THAT MAY HELP
CHILDFIND
1-800-445-2722 Toll-free number for
parents concerned about their child's development. Staffed by educational
consultants from the Connecticut Parent Advocacy Center. Staff will provide parents with information
and direct them to appropriate resources and agencies to assist their children.
CONNECTICUT
BIRTH TO THREE SYSTEM
1-800-505-7000. Statewide referral
service for infants and toddlers under three years old with "significant
developmental disabilities or delays." Parents with concerns about their
children's development will be helped in the evaluation process and in
accessing services for their children. The program also serves children
with a diagnosed medical condition. State and federally funded program.
Information available in English and Spanish on the website.
Connecticut's Health Care Resource Guide
Wealth of Connecticut-focused information on locating health coverage when
you are uninsured, finding assistance with prescription drug costs, home care programs for the elderly,
help for those unable to afford needed eyeglasses, as well as many other health-related needs.
On the website of INFOLINE, a free
state-wide 24/7 phone link to community agencies, services, and organizations. Call 211 twenty-four
hours a day, throughout the year to speak with an Infoline information specialist for referrals to health and
human services or for crisis intervention. Accessible to speakers of any language and by people who use a TYY phone.
211 is a program of the United Way of Connecticut, funded by the Connecticut Department of Social Services
and local United Way organizations.
INFOLINE produces additional on-line directories:
Connecticut Community Resources Database
A statewide directory of Connecticut health and human services.
HIV/AIDS Prevention and Care Guide
Overview of the HIV/AIDS prevention and care programs in Connecticut and links to services.
Health Related Support Groups in Connecticut
Comprehensive listings of health related support groups in Connecticut.
GovBenefits.gov
Online guidance to a variety of federal government benefit
programs. Benefits may be located by state, by federal agency, and by category. By answering a
lengthy questionnaire on the website, the user can retrieve a list of links to benefits programs
for which she is eligible.
Patient Advocate Foundation
A national nonprofit organization that offers help to
individuals facing difficulties with insurers or employers related to their medical
diagnosis. Patients or family members may use an online form
to make requests for personal assistance
related to insurance coverage, debts, or job retention.
Programs that help people in Connecticut.
Benefits Available/Who is Eligible/Where to Go.
Annual booklet produced by Northeast Utilities
and the Connecticut Association for Human Services. Overview of federal,
state and local programs that provide assistance to Connecticut residents.
Includes details on health programs.
Write to Northeast Utilities Community Relations,
Box 270, Hartford CT 06101-8362 or contact Connecticut Association for
Human Services, 110 Bartholomew Avenue, Hartford CT 06106-2232, phone (860)
951-2212. You may download this publication from the "Publications" section of the
Connecticut Association for Human Services website.
Available in Spanish as well as English.
The self-help directory: a guide to Connecticut
and national groups. annual. New Haven, CT. Connecticut Self-Help/Mutual
Support Network.
An annual guide to local and national support
groups, many health-related. Phone (203) 624-6982 for updated information.
Back
to Contents
HOSPITAL CARE INFORMATION
BOOK
How to get out of the hospital alive. A
guide to patient power. Sheldon P.
Blau and Elaine Fantle Shimberg. Book Sales, Incorporated, 2000. 226 p. (ISBN 0-7858-1209-1)
Dr. Blau’s harrowing, role-reversing experience
as a dependent patient suffering a heart attack, rather than his usual
role as a physician directing care, inspired him to write this insider’s
guide to hospital care. Filled with explanatory anecdotes, the book includes
specifics on guarding against human error, recruiting a family member as
patient advocate, understanding the roles of hospital personnel, diagnostic procedures, patients'
rights. Written in easy-to-understand language.
WEBSITE
Patient's
Bill of Rights
Adopted by the U. S. Advisory Commission on Consumer Protection and Quality
in the Health Care Industry in 1998.
Also available, in six languages, is a "plain language brochure," entitled
"The
Patient Care Partnership: Understanding Expectations, Rights and Responsiblities"
on
the American Hospital Association website.
Back
to Contents
LONG TERM CARE OPTIONS
BOOK
Choose the right long-term care. Joseph
L. Matthews. Nolo Press, 2002. Out of print. (ISBN 0-87337-824-5)
Written by an attorney, this clearly written,
practical book provides an overview of effective ways to arrange home care,
assisted living accomodations, and nursing home placement. Includes information
on Medicaid and asset protection, estate planning, and long-term care insurance.
There is a resource guide to national and state agencies.
WEBSITES
Connecticut
Partnership for Long-Term Care
A program of the State of Connecticut in
cooperation with private insurance companies that sell special, long-term
care insurance policies for extended care for chronic illness. These policies
include Medicaid Asset Protection as an option.
Nursing
Home Checklist
Online evaluative checklist useful for comparing
features of nursing homes being considered, from the website of the federal
Medicare program. Checklist can be printed and completed for each nursing
home visited. Some categories allow the visitor to rate and score each
nursing home in specific areas such as quality of life, nutrition, and
safety.
Nursing
Home Compare
Searchable Internet database of inspection
records for nursing homes which receive Medicaid or Medicare funds, from the website of the federal
Medicare program. Within
Connecticut area of database, user can search for nursing home by name
or by city.
A Shopper’s Guide to Long-Term Care Insurance
A brochure outlining types of policies, benefits
covered, eligibility, dealing with inflation, policy renewal, and other
decision-making factors. Includes worksheets for comparing plans. Published online by
the National Association of Insurance Commissioners.
Back
to Contents
GATHERING BACKGROUND INFORMATION ON YOUR DIAGNOSIS
BOOKS
After any diagnosis. How to take action against your illness
using the best and most current medical information available. Carol Svec.
Three Rivers Press, 2001. (ISBN 0-609-80669-6).
A comprehensive, consumer-friendly book advising
patients how to take pro-active, information-gathering steps after they
have been diagnosed with an illness. Discusses how to see beyond the surface
of a news report, how statistics are presented, how to judge information
gathered from the Internet, and how to evaluate hospitals and physicians. Includes
a clear explanation of Medline, the National Library of Medicine database
that indexes medical journal articles.
AfterShock: What to Do When the Doctor Gives You--or Someone You Love--a
Devastating Diagnosis.
Jessie Gruman. New York, Walker and Company, 2007. 276 p. (ISBN 0-8027-1502-8).
An understanding, informative guide for patients or families dealing
with the shock of a life-threatening diagnosis. Written by a social psychologist and consumer advocate
who has survived four serious illnesses, the book provides guidance on gathering and evaluating background
information, involving friends and family, locating appropriate physicians, making arrangements with
employers, managing health care expenses, and finding emotional support. The accompanying website,
AfterShock , updates the appendices by providing detailed information about
medical privacy, information resources, seeking a second opinion, and participating in clinical trials.
Making informed medical decisions. Where
to look and how to use what you find. Nancy Oster, Lucy Thomas, Darol
Joseff. O'Reilly, 2000. (ISBN 1-56592-459-2 paperback).
The three different perspectives of the authors--a
physician, a medical writer, and a medical librarian--enhance the comprehensive
outlook of this beginner's guide to consumer health research. The book
discusses types and characteristics of information resources, planning
and prioritizing research, search strategies, finding and researching clinical
trials, effective communication with your doctor, and where to find support.
Interspersed with informative quotes from patients and family members about
their experiences.
Merck manual of medical information-home
edition. Robert M. Berkow, editor in chief. Merck Research Laboratories,
2003. (0-7434-7734-0 paperback).
An authoritative, comprehensive guide to the
diagnosis and treatment of diseases, written for the patient and family.
Fulltext of Merck
manual of medical information-home edition is available on the Internet.
Port in the Storm. How to Make a Medical Decision and Live to Tell About It.
Cole A. Giller. LifeLine Press, 2004. (ISBN 0-89526-132-4 paperback).
Dr. Giller, an experienced neurosurgeon and cancer survivor, offers a six part plan
to guide patients in making medical decisions. To help in identifying treatment options, the plan's first step,
he describes sources of medical literature, including medical textbooks and reference books found in medical
libraries. He also recommends reliable medical information websites and offers guidelines for using medical websites
effectively.
Studies show. A popular guide to understanding
scientific studies. John H. Fennick. Prometheus Books, 1997. (ISBN
1-57392-136-X).
A detailed explanation for the layman on the
significance and statistics of research studies.
Consult the Reference Librarian at your
public library for assistance in finding information about your diagnosis.
If your library cannot provide the information you request, you or the
librarian, if located in Connecticut, may contact Healthnet:
Connecticut Consumer Health Information Network at the University of
Connecticut Health Center Library for a customized information search in
the medical library.
WEBSITES
Evaluating
Health Information
A collection of articles and brochures related
to finding accurate health information, from the MedlinePlus
consumer health website, published by the National Library of Medicine of the National Institutes
of Health.
Healthfinder
A gateway consumer health information website
produced by the federal government. A well-organized collection of selected
links to databases, support groups, online publications, etc.
MedlinePlus
A selective consumer guide to health information websites,
compiled by the National Library of Medicine. Links to information on more than 700 health topics and
medical conditions.
Next Steps
After Your Diagnosis.
An online publication of the federal Agency
for Healthcare Research and Quality, this straightforward guide suggests
guidelines for making treatment decisions, and discusses resources for reliable health information.
Back
to Contents
END OF LIFE DECISIONS
WEBSITES
Health Care Planning Packet
Summary of Connecticut Health Care Planning
Laws. Select "Living Wills." Includes forms and instructions for completing a living will and appointing
a health care agent.
MedlinePlus
Links to websites of government agencies and
national organizations with information on death and dying, from the National
Library of Medicine's guide to consumer health. Information on advance
directives and law and policy. Some references and summaries of related medical journal articles from Medline,
the National Library of Medicine's online subject index to medical journal
articles.
Your
rights to make health care decisions. A summary of Connecticut law.
Published by the office of the Connecticut Attorney General.
Booklet includes an explanation of the Connecticut law regarding advance directives and living wills. Forms for preparing
a living will are included.
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PRIVACY RIGHTS
WEBSITES
Consumer
Privacy Rights and Information Gathering by Insurance Companies and HMO'S
On the Connecticut Insurance Department website.
Details about the privacy law, including information on companies accessing
personal health information, and how patients can correct erroneous personal
information. Questions and complaints should be directed to the Consumer
Affairs Division of the the Connecticut Insurance Department, phone 1-800-203-3447.
Health
Privacy Project
A program of the Institute for Health Care
Research and Policy at Georgetown University. Information on state and
federal legislation related to patient privacy. Fact sheets with recommendations
on protecting the privacy of your health information. News updates related
to medical privacy issues. Links to other websites with privacy and patient
advocacy information.
How Private is My Medical Information?
A fact sheet on medical records privacy published by the nonprofit
Privacy Rights Clearinghouse. Answers questions such as "Who has access to my medical records?"
"How can I protect the privacy of my medical records?" "How can I get access to my own medical records?"
Medical Information
Bureau/MIB
Voluntary membership association of life insurance
companies in the United States and Canada that maintain health information
about insurance consumers seeking life, health, or disability insurance
coverage.
The "Consumers" section of the
MIB website includes a consumer fact sheet with the company's explanation
of its information gathering process, record maintenance practices, and
confidentiality policies.
"Request Your MIB Consumer File," links
to a toll free phone number for contacting the company for information on your records.
My Personal
Health Record
Information for patients on the website of
the American Health Information Management Association. A guide to your
medical record: its ownership, accessing it, documents usually included,
and protecting its confidentiality.
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LONG TERM PLANNING FOR FAMILY MEMBERS WITH
SPECIAL NEEDS
BOOKS
Laying community foundations for your child
with a disability: How to establish relationships that will support your
child after you're gone. Linda J. Stengle. Woodbine House, 1996. 217
p. (ISBN 0-933149-67-0.) Out of print.
Emphasizes the need to plan social and family
continuity for your dependent child after your death. Detailed, practical,
compassionate suggestions on encouraging friendships, establishing social
networks, planning residential options, selecting long-term advocates and
guardians.
Planning for the future. Providing a meaningful
life for a child with a disability after your death. L. Mark Russell and
Arnold E. Grant. Planning for the Future, Inc., 2005. 5th edition. 642 p. (ISBN 0-912891-20-3)
Written by attorneys whose practices include extensive experience working
with families of children with disabilities. With its focus on the legal aspect of planning,
this comprehensive book outlines how to prepare a life plan for a child's
future, including residential preferences and detailed personal daily preferences
that will provide continuity for the individual's future comfort. Includes
sample letters of intent and living wills. Numerous hypothetical family
stories highlight important details to consider in planning.
WEBSITE
PLAN of Connecticut, Inc.
Nonprofit organization that manages "trusts set up by families
for the benefit of their disabled members." Trusts do not require any minimum funding level.
Originally established by families of children with disabilities.
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This resource guide was compiled by Judith
Kronick, Healthnet Reference Librarian. If you have suggestions for this
list, please contact kronick@uchc.edu.
