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Sources of additional information

This annotated list of organizations was compiled for and printed in Seeking Justice in Health Care:  Guide for Advocates in Faith Communities, first published by UHCAN in 2004, revised in 2006 and updated for this webpage.  It is not exhaustive, but is reflective of the organizations most engaged in our nation's health care debate.  Faith-based resources and organizations are noted elsewhere on this website.

Health Care Policy Research and Advocacy Organizations

Center for Studying Health System Change http://www.hschange.org/ This is a good site for research into specific topics or problems or for statistics about the uninsured, access to care, and the health care market.

The Commonwealth Fund http://www.cmwf.org/ The Commonwealth Fund is a private, mostly research-oriented foundation that sponsors projects to increase insurance coverage, expand access and improve quality of care. Their main page focuses on some hot-topic issues and recent reports, while the list of publications (on the left) provides links to well-researched articles about a variety of health care policy issues. All articles are available in their entirety and are free.

Community Catalyst http://www.communitycatalyst.org Community Catalyst is a national nonprofit advocacy organization working to build public participation in health care reform efforts.  It focuses on capacity-building by providing health care policy tools, analysis, and strategies for consumer health activists.  

Families USA http://www.familiesusa.org/ The Families USA website covers everything. They provide in-depth research on a number of health care and health policy related issues, links to other websites, organizations, and articles that relate to the topics at hand, and updates on legislative and regulatory changes.

Health Affairs http://www.healthaffairs.org/ Health Affairs is “the policy journal of the health sphere”, and a good source for more detailed research into specific policy areas. Many articles are available free and on-line; for others, they ask you to subscribe – or, less expensively, go to your local library and use their subscription.

Herndon Alliance http://herndonalliance.org The Herndon Alliance is comprised of over seventy minority, faith, labor, advocacy, and provider organizations advocating for a health justice movement.  Their goal is to achieve quality, affordable health care for all by expanding the base of people supporting universal health care.  The Alliance is working to identify the core values of the health care justice electoral base, connect those values to other potential supporters and develop strategic initiatives and messages that will unite voters around the need for health care reform.

The Henry J. Kaiser Family Foundation http://www.kff.org/ The Foundation funds and organizes research and policy trials. Their website provides solid, broad information about everything from “Health Coverage and the Uninsured” to prescription drug policy issues to campaigns against HIV and AIDS both here and in South Africa.  In particular, <http://www.kff.org/uninsured/reform.cfm> lists resources, updates, and information about proposals to reduce the number of uninsured.

Institute of Medicine http://www.iom.edu The Institute of Medicine (IOM) is part of the National Academy of Science, and is dedicated to providing unbiased, accurate, scientifically-based information about a wide variety of health-related issues to educators, policy makers, and the public at large.  The IOM regularly issues reports on topics such as women’s health, environmental health, prevention, aging, nutrition, etc.  Most of the reports are available in summary form from their website but must be purchased to be read in their entirety.  The IOM’s reports on the consequences of uninsurance (see Print Resources below) are helpful to anyone trying to understand the causes and costs of uninsurance.

Medicare Rights Center http://www.medicarerights.org/ While the Medicare Rights Center does some work around systemic change (see their Policy/Advocacy link), this is just a great site for Medicare beneficiaries and the people who care for them. It provides thorough information about what is and is not covered, examines state prescription drug assistance programs and internet and mail-order discount pharmacies, helps recipients compare Medicare Plan Options, and answers questions about rules and benefits.

Milbank Memorial Fund http://www.milbank.org/ The Milbank Memorial Fund focuses on health policy research. You can search “featured articles” from the Milbank Quarterly, their health policy journal, or look at recent reports http://www.milbank.org/reports/reportstest.html. The Fund seems to focus a lot on quality and safety issues and less on systemic change, but can still be a valuable resource.

National Coalition on Health Care http://www.nchc.org The National Coalition on Health Care is a non-partisan alliance of about 85 organizations united around the principle of higher quality more affordable health care for all.  The group has produced specifications for reform and numerous studies that point to the deficiencies in U.S. health care.

Physicians for a National Health Program http://www.pnhp.org/ PNHP is an advocacy group that focuses on promoting “single-payer” (Canadian-style) health care reform. Their site is a useful source for information indicting the current health care system and promoting a government-financed and insured system.

Project Hope Center for Health Affairs http://www.projecthope.org/CHA/ Project Hope is dedicated to improving health and health care delivery world-wide. Their CHA site provides links to other health-related publications and current and recent CHA projects. They have some very good statistical analyses and some projects focused on problems with rural health care.

Universal Health Care Action Network (UHCAN) http://www.uhcan.org The Universal Health Care Action Network (UHCAN) is a national resource and strategic center supporting organizations and advocates working for comprehensive, affordable and publicly accountable health care for all in the U.S.

World Health Organization http://www.who.int/ The World Health Organization is the United Nations agency that focuses on health – mental, physical, social, and emotional. It collects and analyzes data from all U.N. members and spearheads advocacy programs for/in some countries. Their “World Health Report 2000” http://www.who.int/whr2001/2001/archives/2000/en/ compares the price, effectiveness and efficiency of health systems around the world.

Government Resources

Centers for Medicare & Medicaid Services http://www.cms.gov/ Provides basic information about Medicare, Medicaid, S-CHIP, and other government health programs: histories of the programs, benefits and coverage, regulations, updates on changes. Also available are some statistics on Medicare and Medicaid enrollment, expenditures, and utilization.

US Department of Health and Human Services http://www.hhs.gov HHS is the U.S. government's principal agency for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves. Serving as an umbrella for over 300 programs, HHS covers a wide spectrum of activities, including assuring food and drug safety, Medicare and Medicaid, and comprehensive health services for Native Americans.

Health Resources and Service Administration http://www.hrsa.gov/ Part of HHS, HRSA is a useful source for statistics about health coverage, the availability of care in rural and urban neighborhoods, the distribution of all types of health care providers across various types of community. Many statistics are available on the Web; other sources can be ordered (at no cost) from the Administration and tend to arrive within two or three weeks. <http://www.ruralhealth.hrsa.gov/> focuses on rural health policy.

The National Institutes of Health (NIH) http://nih.gov Also part of HHS, the NIH is one of the world's foremost medical research centers. It is the federal focal point for health research.  The website includes numerous studies about disparities in health care among underserved populations, minorities and women, and gives considerable attention to children’s health.

Thomas http://thomas.loc.gov/ Legislative Information on the Internet is a site by the Library of Congress. The site provides all sorts of information about Congress and its doings, including current and past legislation, treaties, and calendars. You can search for bills by key word or by Congress (101st, 93rd, etc…)

U.S. Census Bureau http://www.census.gov/  Internet source of all census information – race, gender, income, occupation, housing…health insurance data are at http://www.census.gov/hhes/www/hlthins.html

Brookings Institution http://www.brookings.org The Brookings Institution is a private nonprofit organization that focuses on providing quality research, analysis and recommendations to inform public discourse on a full range of domestic and international policy issues – including health care.  Their website contains extensive information about health care policy and financing.

Campaign for America’s Future http://www.ourfuture.org/ Campaign for America’s Future is a “center of progressive strategy” focused mainly on preventing the privatization of Social Security, encouraging investment in alternative energy sources, advocating for good jobs in a sustainable economy, and affordable health care. The Campaign is associated with the Institute for America’s Future, a non-partisan research and education group developing policy ideas and educational materials.

Center on Budget and Policy Priorities http://www.cbpp.org/ The Center works at federal and state levels on fiscal policy and public program issues relevant to low- and middle-income families. They publish a lot of solid information on all kinds of policy issues: federal tax policy, labor market policies, low-income housing, Social Security, federal and state budgets, including health care.

Center for American Progress www.americanprogress.org The Center for American Progress is an educational institute that “advances policies that help create sustained economic growth and new opportunities for all Americans” and supports “fiscal discipline, shared prosperity, and investments in people through education, health care and workforce training.”  CAP offers reflective analysis on current public issues, including health care. 

Consumers Union http://www.consumersunion.org Consumers Union, which publishes, Consumer Reports is an independent, nonprofit testing and information organization that serves only consumers.  Their reports cover current issues of concern to the American public, including the purchasing and use of a wide-range of health care products and service.  The work of their Consumer Policy Institute includes consideration of health policy issues.

Economic Policy Institute http://www.epinet.org/ The Institute headlines its main page as “Research and Ideas for Working People”. The Institute focuses on issues like a living wage, poverty lines and family budgets, Social Security, and unemployment insurance.

Foundation for Taxpayer and Consumer Rights http://www.consumerwatchdog.org The Foundation targets a wide variety of issues – slightly slanted toward California politics, it nonetheless provides information and ideas that could be helpful across the nation.

New America Foundation http://www.newamerica.net The New America Foundation is an independent, nonpartisan, nonprofit institute seeking to engage new voices in new ways of thinking about the issues facing our country.  It is noted for its desire to move public discourse beyond traditional political partisanship.  Their website contains extensive information about health policy, quality and costs.

Public Citizen http://www.publiccitizen.org/ Public Citizen focuses on consumer protection – everything from car safety to environmental legislation and clean-up. They have a comprehensive health care page http://www.publiccitizen.org/hrg/ that addresses drug safety issues and pharmaceuticals’ marketing practices, among other topics. Part of their “Congress Watch” site, http://www.publiccitizen.org/congress/reform/index.cfm, also covers the politics of patent protections (in general as well as for some specific drugs) and examines current legislation.

Urban Institute http://www.urban.org/ The Urban Institute funds and publishes economic and social policy research. The “research” and “issues in focus” links at the top of their main page allow you access to hundreds of articles about insurance, care for the uninsured, Medicare and Medicaid, among others.

Related Single-Issue Organizations

Center for Responsive Politics http://www.opensecrets.org/ The Center for Responsive Politics is probably the best follow-the-money site. Their main page offers links to updates on specific issues, the chance to search for your congressional representatives and see who’s been donating to their campaigns, and updates of money raised for the current presidential election. You can track donations and trends by industry, party, and politician.

Employee Benefits Research Institute http://www.ebri.org/ The EBRI is “the only nonprofit, nonpartisan organization committed exclusively to data dissemination, policy research, and education on economic security and employee benefits.” EBRI’s “Health Research and Education Program” (<http://www.ebri.org/hrep/index.htm>) is a great source for statistics and trends related to employer-based health coverage; their home page features regular news releases and updates, as well.

OMB Watch (White House Office of Management and Budget) http://www.ombwatch.org/ OMB watch monitors what the powerful White House Office of Management and Budget does and says about America’s finances. Type “health care” into their search engine, and piles of articles appear, examining (and often criticizing) the budget politics behind government health care decisions.

Print Resources

Benchmarks of Fairness for Health Care Reform
by Norman Daniels, Donald Light and Ronald Caplan (Oxford University Press, 1996) provides the moral compass for discussion about health care reform.  Its purpose is to “provide a framework that facilitates debate and understanding and clarifies what social values are at stake, often hidden, in the complex details of health policy.”  (p. 3)  Originally the book was written to assess and promote discussion about the Clinton Administration proposals for reform in a technologically advanced system that was inefficient and inequitable and lacked universal coverage.  Since that time, the benchmarks have been revised to offer evaluation points for fairness appropriate for reform proposals in any country in any level of development.  The revised benchmarks may be found in the Bulletin of the World Health Organization 2000; 78:740-50 http://www.who.int/bulletin/en.

Institute of Medicine Reports:

The following reports are all part of the IOM’s “Consequences of Uninsurance” project, and are invaluable resources for understanding the true cost – personal, societal, financial, and environmental – of uninsurance.  All reports are available for purchase from the IOM website under http://www.iom.edu/project.asp?id=4660.

“Coverage Matters:  Insurance and Health Care,” October 11, 2001
"Care Without Coverage:  Too Little, Too Late,” May 21, 2002 
“Health Insurance is a Family Matter,” September 18, 2002 
“A Shared Destiny:  The Community Effects of Uninsurance,” March 6, 2003 
“Hidden Costs, Value Lost:  Uninsurance in America,” June 17, 2003
“Insuring America's Health: Principles and Recommendations,” January 14, 2004 

Also available from the IOM: 

"Crossing the Quality Chasm: A New Health System for the 21st Century,” March 1, 2001

Understanding Health Policy:  A Clinical Approach
by Thomas Bodenheimer, MD and Kevin Grumbach, MD (Third Edition, Lange Medical Books, 2002) lays out our health care system section by section.  The book is easy to read, with illustrative stories and diagrams, and helps the reader understand how health care policy, finance, delivery and quality interact.  “Understanding Health Policy” is a great basic resource.

Faithful Reform in Health Care ~ P.O. Box 6174 ~ Wilson, NC 27894-6174 ~ 1-888-863-8910