The Official Patient's Sourcebook on Lupus (27 page)

·
Massachusetts:
Treadwell Library Consumer Health Reference Center

(Massachusetts General Hospital),

http://www.mgh.harvard.edu/library/chrcindex.html

·
Massachusetts:
UMass HealthNet (University of Massachusetts Medical

School),
http://healthnet.umassmed.edu/

·
Michigan:
Botsford General Hospital Library - Consumer Health

(Botsford General Hospital, Library & Internet Services),

http://www.botsfordlibrary.org/consumer.htm

·
Michigan:
Helen DeRoy Medical Library (Providence Hospital and

Medical Centers),
http://www.providence-hospital.org/library/

·
Michigan:
Marquette General Hospital - Consumer Health Library

(Marquette General Hospital, Health Information Center),

http://www.mgh.org/center.html

·
Michigan:
Patient Education Resouce Center - University of Michigan

Cancer Center (University of Michigan Comprehensive Cancer Center),

http://www.cancer.med.umich.edu/learn/leares.htm

·
Michigan:
Sladen Library & Center for Health Information Resources -

Consumer Health Information,

http://www.sladen.hfhs.org/library/consumer/index.html

·
Montana:
Center for Health Information (St. Patrick Hospital and Health Sciences Center),

http://www.saintpatrick.org/chi/librarydetail.php3?ID=41

154 Lupus Nephritis

·
National:
Consumer Health Library Directory (Medical Library

Association, Consumer and Patient Health Information Section),

http://caphis.mlanet.org/directory/index.html

·
National:
National Network of Libraries of Medicine (National Library of Medicine) - provides library services for health professionals in the

United States who do not have access to a medical library,

http://nnlm.gov/

·
National:
NN/LM List of Libraries Serving the Public (National Network of Libraries of Medicine),
http://nnlm.gov/members/

·
Nevada:
Health Science Library, West Charleston Library (Las Vegas

Clark County Library District),

http://www.lvccld.org/special_collections/medical/index.htm

·
New Hampshire:
Dartmouth Biomedical Libraries (Dartmouth College

Library),

http://www.dartmouth.edu/~biomed/resources.htmld/conshealth.htmld/

·
New Jersey:
Consumer Health Library (Rahway Hospital),

http://www.rahwayhospital.com/library.htm

·
New Jersey:
Dr. Walter Phillips Health Sciences Library (Englewood

Hospital and Medical Center),

http://www.englewoodhospital.com/links/index.htm

·
New Jersey:
Meland Foundation (Englewood Hospital and Medical

Center),
http://www.geocities.com/ResearchTriangle/9360/

·
New York:
Choices in Health Information (New York Public Library) -

NLM Consumer Pilot Project participant,

http://www.nypl.org/branch/health/links.html

·
New York:
Health Information Center (Upstate Medical University, State University of New York),
http://www.upstate.edu/library/hic/

·
New York:
Health Sciences Library (Long Island Jewish Medical Center),
http://www.lij.edu/library/library.html

·
New York:
ViaHealth Medical Library (Rochester General Hospital),

http://www.nyam.org/library/

·
Ohio:
Consumer Health Library (Akron General Medical Center, Medical

& Consumer Health Library),

http://www.akrongeneral.org/hwlibrary.htm

·
Oklahoma:
Saint Francis Health System Patient/Family Resource Center (Saint Francis Health System),
http://www.sfh-tulsa.com/patientfamilycenter/default.asp

Finding Medical Libraries 155

·
Oregon:
Planetree Health Resource Center (Mid-Columbia Medical

Center),
http://www.mcmc.net/phrc/

·
Pennsylvania:
Community Health Information Library (Milton S.

Hershey Medical Center),
http://www.hmc.psu.edu/commhealth/

·
Pennsylvania:
Community Health Resource Library (Geisinger Medical

Center),
http://www.geisinger.edu/education/commlib.shtml

·
Pennsylvania:
HealthInfo Library (Moses Taylor Hospital),

http://www.mth.org/healthwellness.html

·
Pennsylvania:
Hopwood Library (University of Pittsburgh, Health

Sciences Library System),
http://www.hsls.pitt.edu/chi/hhrcinfo.html

·
Pennsylvania:
Koop Community Health Information Center (College of

Physicians of Philadelphia),
http://www.collphyphil.org/kooppg1.shtml

·
Pennsylvania:
Learning Resources Center - Medical Library

(Susquehanna Health System),

http://www.shscares.org/services/lrc/index.asp

·
Pennsylvania:
Medical Library (UPMC Health System),

http://www.upmc.edu/passavant/library.htm

·
Quebec, Canada:
Medical Library (Montreal General Hospital),

http://ww2.mcgill.ca/mghlib/

·
South Dakota:
Rapid City Regional Hospital - Health Information Center (Rapid City Regional Hospital, Health Information Center),

http://www.rcrh.org/education/LibraryResourcesConsumers.htm

·
Texas:
Houston HealthWays (Houston Academy of Medicine-Texas

Medical Center Library),
http://hhw.library.tmc.edu/

·
Texas:
Matustik Family Resource Center (Cook Children’s Health Care

System),
http://www.cookchildrens.com/Matustik_Library.html

·
Washington:
Community Health Library (Kittitas Valley Community

Hospital),
http://www.kvch.com/

·
Washington:
Southwest Washington Medical Center Library (Southwest

Washington Medical Center),
http://www.swmedctr.com/Home/

Your Rights and Insurance 157

APPENDIX E. YOUR RIGHTS AND INSURANCE

Overview

Any patient with lupus nephritis faces a series of issues related more to the

healthcare industry than to the medical condition itself. This appendix

covers two important topics in this regard: your rights and responsibilities as a patient, and how to get the most out of your medical insurance plan.

Your Rights as a Patient

The President’s Advisory Commission on Consumer Protection and Quality

in the Healthcare Industry has created the following summary of your rights

as a patient.
56

Information Disclosure

Consumers have the right to receive accurate, easily understood information.

Some consumers require assistance in making informed decisions about

health plans, health professionals, and healthcare facilities. Such information includes:

·
Health plans.
Covered benefits, cost-sharing, and procedures for resolving complaints, licensure, certification, and accreditation status,

comparable measures of quality and consumer satisfaction, provider

network composition, the procedures that govern access to specialists

and emergency services, and care management information.

56Adapted from Consumer Bill of Rights and Responsibilities:

http://www.hcqualitycommission.gov/press/cbor.html#head1
.

158 Lupus Nephritis

·
Health professionals.
Education, board certification, and recertification, years of practice, experience performing certain procedures, and

comparable measures of quality and consumer satisfaction.

·
Healthcare facilities.
Experience in performing certain procedures and services, accreditation status, comparable measures of quality, worker,

and consumer satisfaction, and procedures for resolving complaints.

·
Consumer assistance programs.
Programs must be carefully structured to promote consumer confidence and to work cooperatively with health

plans, providers, payers, and regulators. Desirable characteristics of such

programs are sponsorship that ensures accountability to the interests of

consumers and stable, adequate funding.

Choice of Providers and Plans

Consumers have the right to a choice of healthcare providers that is

sufficient to ensure access to appropriate high-quality healthcare. To ensure

such choice, the Commission recommends the following:

·
Provider network adequacy.
All health plan networks should provide access to sufficient numbers and types of providers to assure that all

covered services will be accessible without unreasonable delay --

including access to emergency services 24 hours a day and 7 days a week.

If a health plan has an insufficient number or type of providers to

provide a covered benefit with the appropriate degree of specialization,

the plan should ensure that the consumer obtains the benefit outside the

network at no greater cost than if the benefit were obtained from

participating providers.

·
Women’s health services.
Women should be able to choose a qualified provider offered by a plan -- such as gynecologists, certified nurse

midwives, and other qualified healthcare providers -- for the provision of

covered care necessary to provide routine and preventative women’s

healthcare services.

·
Access to specialists.
Consumers with complex or serious medical conditions who require frequent specialty care should have direct access

to a qualified specialist of their choice within a plan’s network of

providers. Authorizations, when required, should be for an adequate

number of direct access visits under an approved treatment plan.

·
Transitional care.
Consumers who are undergoing a course of treatment for a chronic or disabling condition (or who are in the second or third

trimester of a pregnancy) at the time they involuntarily change health

Your Rights and Insurance 159

plans or at a time when a provider is terminated by a plan for other than

cause should be able to continue seeing their current specialty providers

for up to 90 days (or through completion of postpartum care) to allow for

transition of care.

·
Choice of health plans.
Public and private group purchasers should, wherever feasible, offer consumers a choice of high-quality health

insurance plans.

Access to Emergency Services

Consumers have the right to access emergency healthcare services when and

where the need arises. Health plans should provide payment when a

consumer presents to an emergency department with acute symptoms of

sufficient severity--including severe pain--such that a “prudent layperson”

could reasonably expect the absence of medical attention to result in placing

that consumer’s health in serious jeopardy, serious impairment to bodily

functions, or serious dysfunction of any bodily organ or part.

Participation in Treatment Decisions

Consumers have the right and responsibility to fully participate in all

decisions related to their healthcare. Consumers who are unable to fully

participate in treatment decisions have the right to be represented by

parents, guardians, family members, or other conservators. Physicians and

other health professionals should:

· Provide patients with sufficient information and opportunity to decide

among treatment options consistent with the informed consent process.

· Discuss all treatment options with a patient in a culturally competent

manner, including the option of no treatment at all.

· Ensure that persons with disabilities have effective communications with

members of the health system in making such decisions.

· Discuss all current treatments a consumer may be undergoing.

· Discuss all risks, benefits, and consequences to treatment or

nontreatment.

· Give patients the opportunity to refuse treatment and to express

preferences about future treatment decisions.

160 Lupus Nephritis

· Discuss the use of advance directives -- both living wills and durable

powers of attorney for healthcare -- with patients and their designated

family members.

· Abide by the decisions made by their patients and/or their designated

representatives consistent with the informed consent process.

Health plans, health providers, and healthcare facilities should:

· Disclose to consumers factors -- such as methods of compensation,

ownership of or interest in healthcare facilities, or matters of conscience --

that could influence advice or treatment decisions.

· Assure that provider contracts do not contain any so-called “gag clauses”

or other contractual mechanisms that restrict healthcare providers’ ability

to communicate with and advise patients about medically necessary

treatment options.

· Be prohibited from penalizing or seeking retribution against healthcare

professionals or other health workers for advocating on behalf of their

patients.

Respect and Nondiscrimination

Consumers have the right to considerate, respectful care from all members of

the healthcare industry at all times and under all circumstances. An

environment of mutual respect is essential to maintain a quality healthcare