The Becker Friedman Institute for Economics publishes research and analysis from researchers at the University of Chicago’s Booth School of Business, the Kenneth C. Griffin Department of Economics, the Harris School of Public Policy, and the University of Chicago Law School. Among the topics the institute addresses are health care and health disparities.
Duke Margolis Center for Health Policy works to improve health care and the value of health through evidence-based policies on biomedical innovation, education and workforce development, health care transformation and on such topics as accountable care and COVID-19. The center’s director is Dr. Mark McClellan, a former commissioner of the Food and Drug Administration and past administrator of the federal Centers for Medicare and Medicaid Services.
The Lerner Center for Public Health Promotion is a population health research center based at the Maxwell School at Syracuse University. Established in 2011, the center seeks to improve population health through research, education and evidence-based policy and practice. It has an extensive resource center on topics related to health and society.
Institute for Patient- and Family-Centered Care (IPFCC). The IPFCC seeks to advance the understanding and practice of patient- and family-centered care and works with patients, families, and health care professionals through education, consultation, and providing research and strategic partnerships.
RAND is a nonprofit, nonpartisan organization that seeks to improve policy and decision-making through research and analysis. Its research on health, health insurance, health care reform, and health information technology examines how the organization and financing of care affect costs, quality and access.
JD Power Healthcare. Researchers from J.D. Power uses consumer surveys to rate health insurance companies, health plans, pharmacies, vision and dental plans and blood glucose meters. Its healthcare ratings are based on the opinions of a sample of consumers who have used or owned the product or service being rated.
United States of Care is a nonprofit and nonpartisan organization seeking to ensure that every American has access to quality, affordable health care regardless of health status, social need, or income.
46brooklyn Research is a nonprofit corporation in Ohio that seeks to improve the accessibility and usability of drug pricing data in the United States by collecting and curating drug price data from a variety of sources. Founded by professionals from the community pharmacy industry, 46brooklyn also publishes research based on public data to explain the complexities built into the drug supply business.
IQVIA was formed through the merger of IMS Health and Quintiles and provides contract research services to life sciences companies. Also, it provides data and reports on pharmaceutical spending and drug development. Much of its research is proprietary but some is available to the public.
Society to Improve Diagnosis in Medicine (SIDM). The society is a nonprofit organization that seeks to improve diagnosis and eliminate harm from diagnostic error. It provides resources for patients, clinicians and educators. In 2015, the society established the Coalition to Improve Diagnosis, to increase awareness about the need to improve diagnosis.
The Coalition to Improve Diagnosis is a division of the Society to Improve Diagnosis in Medicine representing patients and health care providers. The coalition advocates for increase research funding and promotes the adoption of effective quality improvement interventions.
The Patient-Centered Primary Care Collaborative. Founded in 2006, the Patient-Centered Primary Care Collaborative (PCPCC) is a not-for-profit multi-stakeholder membership organization that seeks to improve the health system by focusing on primary care and the patient-centered medical home. It provides reports and other resources for patients and clinicians that could be useful to journalists.
EconoFact is a non-partisan publication designed to bring key facts and analysis to the national debate on economic and social policies. Academic economists contribute to this site that is funded by the Edward R. Murrow Center for a Digital World at The Fletcher School at Tufts University.
The Integrated Benefit Institute is an organization for employers that develops resources to help them improve the productivity and performance of their workforces.
Costs of Care is a nongovernmental organization founded by Neel Shah, MD, that curates and disseminates knowledge from patients and clinicians about the costs of care to help health systems deliver better care at lower cost and to ensure that patients get safe, dignified, and affordable care.
National Council on Aging helps those Americans aged 60 and over to meet the challenges of aging by partnering with nonprofit organizations, government and businesses to provide community programs and services, advocacy and online help.
The mission of the Cecil G. Sheps Center for Health Services Researchis to improve the health of individuals, families, and populations by understanding the problems, issues and alternatives in the design and delivery of health care services. Based at the University of North Carolina Division of Health Affairs, it does this work through research into the access, adequacy, organization, cost and effectiveness of health care and by sending this information to policy makers and the public.
One of its initiatives is the Rural Health Research Program, which tracks problems Americans in rural areas have in accessing care, and it keeps a tally of rural hospitals that have closed in recent years. The center also houses the North Carolina Institute of Medicine.
Other initiatives of the Sheps Center address aging, disability, and long-term care; health workforce research and policy; medical practice and prevention; healthcare organization research; health disparities; primary care research; child and adolescent health services; mental health and substance abuse services; health care economics and finance; and general health services research.
The Center for Health Insurance Reforms is based at the Georgetown University Health Policy Institute and produces evidence-based research, analysis and advice designed to improve access to affordable and adequate health insurance. It conducts research on issues related to health policy and health services. HPI is affiliated with Georgetown’s public policy graduate programs (the McCourt School of Public Policy). CHIR staff members provides policy expertise and technical assistance to federal and state policymakers, regulators and others. They are also well versed sources in topics related to health insurance underwriting, marketing and products, and the complex state and federal rules governing the health insurance marketplace.
Center for Value Based Insurance Design at University of Michigan: The center says the basic premise of value-based insurance design (VBID) seeks to improve health outcomes by remove barriers to essential, high-value health services by suggesting, for example, that copayments and deductibles force some consumers and patients not to get needed medications or treatments.
KelloggInsight: Healthcare: Researchers from the Kellogg School of Management at Northwestern University publish articles about their research on this site.
National Alliance of Healthcare Purchaser Coalitions. The National Alliance is a nonprofit representing more than 12,000 employers (or health care purchasers) and their 45 million employees, family members, and retirees. The employer-purchasers spend $300 billion on health care each year. The alliance is a good source for reports on employer spending and strategies to control costs and improve quality.
The Health Care Transformation Task Force was established in 2014 to bring together patients, payers, providers, and purchasers to act as a private-sector driver, coordinator, and facilitator of delivery system transformation. The task force also serves as a public voice on value-based payment and care delivery reform.
Business for Medicare for All represents business owners who say Medicare for All must be a top policy priority of American businesses, adding that the profit-driven health insurance system poses a threat to business. Also, they say that high health insurance costs lower profits and wages, harm innovation, and hinder international competitiveness.
PBM Accountability Project of New Hampshire. This organization of labor and business leaders, patient groups, health care providers, and municipalities formed the PBM Accountability Project of New Hampshire in August 2019, to raise awareness of the role PBMs play in raising prescription drug prices. The site offers useful resources that explain how PBMs work.
Health Over Profit is a group of individuals who support a national Medicare for all health care system.
California Health Advocates provides information for journalists and consumers on Medicare, Medicare supplemental coverage and long-term-care insurance. While the program is designed to serve California residents, CHA experts also serve journalists from across the country. Bonnie Burns, a CHA training and policy specialist consultant, is a national expert on such issues and is often quoted in national publications and broadcast media outlets.
The Cato Institute is a libertarian think tank focused on individual liberty, limited government and free markets. For journalists, the institute has published reports on health care workforce reform, the COVID-19 pandemic, health reform and other topics. Cato says it does not do lobbying, back political candidates, engage in political activities, associate with any political organization or party or accept government funding.
Public Citizen is a nonprofit consumer advocacy organization that champions the public interest in Washington and state capitols and has a section devoted to health care. Since its founding in 1971, Public Citizen has advocated for patient safety and health care for all.
The Better Medicare Alliance: The mission of the BMA is to advocate for a strong Medicare Advantage program. It has opposed cuts in payment for MA plans.
The Council for Affordable Health Coverage is a group that represents organizations of patients, consumers, employers, physicians, and health insurers that says it urges policy makers to implement solutions to improve health care transparency.
California Maternal Quality Care Collaborative. The California Maternal Quality Care Collaborative has developed the Maternal Data Center as an online tool that can product performance metrics on maternity care services for hospitals to supports quality improvement activities and service-line management for clinicians and administrators. The collaborative also develops quality improvement initiatives and conducts research to improve health outcomes for mothers and infants.
Nondiscrimination rules require public notice: An article from the law firm Epstein Becker Green explains the steps health care provider organizations need to take to comply with the nondiscrimination rules under the Affordable Care Act’s Section 1557. The article says that in May 2016, the U.S. Department of Health and Human Services issued a final rule, “Nondiscrimination in Health Programs and Activities” implementing the nondiscrimination provisions in the ACA’s Section 1557. The rule was effective on July 18, 2016. By October 16, 2016, health care providers needed to notify the public of their compliance with these nondiscrimination provisions by posting nondiscrimination notices in multiple languages.
The Coalition to Protect Patient Choice is an advocacy organization that opposes insurance company mergers and that reportedly is funded by the hospital industry. CPPC was founded by David Balto, a former trial attorney in the Antitrust Division of the federal Department of Justice and former policy director of the Bureau of Competition at the Federal Trade Commission. The CPPC website has a collection of articles, videos, and testimony on how health insurance mergers could affect consumers. Journalists should use this material with caution and note that Balto has said the source of CPPC’s funding is ‘not relevant.’
Integrative Health Policy Institute seeks to eliminate barriers to health by advocating for a health system that promotes and supports consumers’ health and well-being by working, for example, on patient-centered care. Under patient-centered care, health care professionals would serve patient needs above all else, the institute said.
The Right Care Alliance is a coalition of clinicians, patients and consumers seeking to make health care institutions accountable to their communities and to put patients, not profits, at the heart of health care. One of its initiatives focuses on eliminating all barriers, such as lack of health insurance, for COVID-19 vaccinations and testing.
HealthCare.com is an online company that helps consumers shop for and enroll in health insurance coverage and to make health care decisions. A privately-owned company, HealthCare.com said it provides recommendations to help consumers.
Patients for Affordable Drugs. P4AD says it’s the only independent national patient group focused exclusively on reducing the price of prescription drugs and that it does not take funding from any organizations that profit from the development and distribution of these drugs.
Consumers Union Health Care Value Hub. In March 2015, Consumers Union started the Health Care Value Hub to address issues related to health care costs and quality. The hub is a networking and resource center for those working to reduce the cost of care and improve the value the health care system delivers. Funded by the Robert Wood Johnson Foundation, the hub will provide research-based information and tools for those seeking to reduce costs and increase health care quality. Lynn Quincy will serve as hub director.
State Health Insurance Assistance Programs (SHIPs) provide local and objective insurance counseling and assistance to Medicare-eligible individuals, their families, and caregivers. The SHIP programs in each state are among the best sources of unbiased information on Medicare.
Many consultants specializing in human resources and health care strategies have experts and reports on health policy and health insurance. Many of these firms conduct regular surveys on employers’ strategies and much of this material is available online. Here are just a few of them:
The Sherlock Company provides financial and management advice to health insurers, health care organizations and their business partners. Among the services it provides that could be useful to journalists are health plan cost and performance benchmarks and research.
Avalere. This health care consulting company produces dozens of reports on the strategies health providers and health systems use to improve the delivery of care, boost quality and cut costs. Among other topics, recent reports have addressed the shift from volume- to value-based care, health policy, big data, pharmaceutical costs, health insurance premium trends, health information technology, the state and federal health insurance marketplaces, risk sharing and alternative payment models.
Costs and pricing
The Healthcare Payment Glossary. This glossary from The Center for Healthcare Quality and Payment Reform could be useful for journalists writing about payment reform or any of the various methods insurers use to pay hospitals, physicians and other providers. The glossary explains the difference between “global payment” and “global budget” and defines such common terms as “population-based payment” and “third-party administrator.”
FAIR Health is an independent nonprofit organization that collects data for and manages what says is the nation’s largest database of privately billed health insurance claims. FAIR Health also has Medicare parts A, B and D claims data from 2013 to the present.
Healthcare BlueBook says it uses price and quality data and information from health care claims to protect consumers and employers from overpriced, low-quality health. Also, it has an online health care shopping tool that employees working for more than 5,000 employers use when shopping for health care services.
Concert Genetics is a health technology company that catalogs the number and variety of genetic tests and curates statistics on their use. As of early in 2019, it estimated that the nation’s genetic testing labs offered more than 140,000 genetic tests to physicians and consumers, almost double the number offered in the previous year.
Employee survey shows that as deductibles and out-of-pocket costs rise, perceived value of benefits falls
A report from benefits consulting firm Mercer shows that health insurance benefits are an important element of employers’ efforts to attract and retain employees. But the perceived value of health insurance benefits is declining among workers who complain about rising out-of-pocket costs in high deductible plans.
Most workers responding to the 2013 Mercer Workplace Survey agreed that benefits are just as important to them as their salaries. But among some workers, such as those who were under age 50, only 30 percent said their health insurance benefits were “definitely worth it.” In 2011, 45 percent of workers under age 50 said their health insurance benefits were “definitely worth it.” Mercer conducted the survey of 1,506 participants in retirement plans offered by U.S. companies and who also have health benefits from those companies.
The survey results showed that workers in companies with 500 or fewer employees were more likely than those in large companies of 2,000 or more workers to report that their health benefits had been scaled back, the report showed. A trend to scale back health benefits reflects efforts by smaller companies to control health benefit costs by increasing the deductibles and copayments for health insurance coverage, Mercer said.
Assistant Secretary for Planning and Evaluation (ASPE) advises the federal Secretary of the Department of Health and Human Services on policy developments in health, disability, human services, data, science and economic policy. For journalists, the ASPE conducts research and evaluation studies on health insurance and the uninsured and publishes estimates on the cost and benefits of policy alternatives.
Rural Health Research Gateway provides access to research from the Rural Health Research Centers for policymakers, educators, public health workers and hospital administrators. The federal Office of Rural Health Policy provides funding for the gateway.
The National Health Service Corps (NHSC) is a division of the federal Health Resources and Services Administration that sends providers to deliver primary care, dentistry services and mental health care to areas where health professionals are in short supply. In 2020, NHSC sent some 14,000 providers to underserved areas.
The Congressional Research Service serves as shared staff to congressional committees and members of Congress. Its experts assist members of Congress in all parts of the legislative process, including developing legislation and the oversight of enacted laws. A division of the Library of Congress, the agency says its experts examine all sides of an issue when analyzing policies and the effects of policy proposals.
National Drug Code Directory. The FDA publishes a list of all drugs sold in the United States in the NDC Directory, and the FDA provides an update to the list every day. The Drug Listing Act of 1972 requires drug companies to provide the FDA with a list of all drugs sold to that each prescription drug in common use has an NDC number.
Medicaid Data on the National Average Drug Acquisition Costs (NADAC). The federal Centers for Medicare and Medicaid Services publishes reference data every week from NADAC dating back to November 2013 and through the current week. For information on how to use NADAC data, see the What’s It Cost? Start with NADAC page from 46Brooklyn Research, a non-profit that curates information on drug prices.
The National Council on Disability is NCD is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
The CMS Innovation Center. Formerly known as the Center for Medicare and Medicaid Innovation, the CMS Innovation Center lists and explains various payment and service delivery models designed to improve to care for patients and cut costs. It publishes frequent reports on CMS’ demonstration projects and its databased is searchable.
National Academy of Medicine. Formerly known as the Institute of Medicine, NAM is a private, nonprofit institution that is one of three academies that make up the National Academies of Sciences, Engineering, and Medicine (known as the National Academies). NAM works outside of government to provide objective advice on health.
National Institute on Aging. One of the 27 institutes and centers of the National Institutes of Health, the National Institute on Aging is the primary federal agency supporting and conducting Alzheimer's disease research and leads a scientific effort to understand the nature of aging and to extend the active years of life.
Congressional Budget Office. The CBO does nonpartisan research and analysis for members of the U.S. Congress. It’s reports cover a variety of topics related to federal spending for health care and health insurance.
The Health Care Cost Institute This independent, nonprofit organization holds data on more than 50 million commercially insured individuals per year since 2008 and, as a Medicare Qualified Entity, HCCI also has 100 percent of Medicare Fee-for-Service claims data on roughly 40 million individuals per year since 2012. HCCI data enables world class research and sheds light on health care spending as a product of prices and utilization. The Institute produces reports and issue briefs throughout the year based on its independent analysis and also provides data access for researchers and partners.
Drivers of 2015 Health Insurance Premium Changes The American Academy of Actuaries has released the Health Practice Council's new issue brief providing an overview of the factors underlying general premium rate setting and highlighting the major drivers behind why 2015 premiums could differ from those in 2014 under the Affordable Care Act (ACA).
eHealth Insurance Price Index The eHealth Health Insurance Price Index is designed to report on what consumers actually pay for insurance under the Affordable Care Act. eHealth operates a private health insurance exchange. Updated daily and showing what individuals actually pay without subsidies, the index shows that health insurance under the ACA is more expensive than it was before the ACA became effective on Jan. 1, 2014, eHealth reported. As of Feb. 24, the average premium for an individual health plan selected through eHealth without a subsidy was $274 per month, an amount that is 39 percent higher than what the average individual paid before the ACA became effective, eHealth said.
A report released on Nov. 20, 2013, by Catalyst for Payment Reform examines the leading price transparency tools and solutions available from health plans and independent vendors and offers insight on where they excel and where they may fall short. A high-level summary can be found in the Health Affairs blog.
Reference Pricing: Will Price Caps Help Contain Health Care Costs? On Nov. 18, 2013, a panel of experts addressed a new strategy employers have begun known as "reference pricing" to help reduce health care costs. Under this benefit design, employees get insurance plans that set price caps on certain services and procedures. Enrollees are allowed to use any provider. But if they use providers with fees higher than the "reference price," they must pay the difference between the reference price limit, determined by the employer or insurer, and the actual charge. The transcript and video are available here. The event was sponsored by the Alliance for Health Reform and WellPoint.
The Private Exchange Evaluation Collaborative The Private Exchange Evaluation Collaborative (PEEC) was formed in the fall of 2013 to provide employers with unbiased, comparative information about private insurance exchanges and to help employers make more informed decisions about exchanges. The sponsoring organizations are the Employers Health Coalition, the Midwest Business Group on Health, the Northeast Business Group on Health, the Pacific Business Group on Health, and Price waterhouse Coopers. Employers of all sizes are interested in determining how private health insurance exchanges can help them cut health care costs and reduce the administrative burden of offering health care benefits employees, retirees, and family members. While many studies have shown that employers are interested in learning more about private exchange options for active and retired workers, insurance brokers, benefit consultants, health insurers and other vested interests run most private exchanges. PEEC says it is an independent, objective initiative designed to support employers in developing private exchange strategies and evaluating potential choices among exchange vendors.
Florida Health Care Coalition: The Florida Health Care Coalition is a group of Florida employers representing nearly two million employees and their family members. Its mission is to educate employers, consumers, health plans, and providers to help them improve the quality of health care delivered in the Sunshine State and nationwide.
National Business Group on Health: Founded in 1974, NBGH represents large employers’ interests on national health policy issues, health care, and health insurance. Produces an annual survey on employers’ costs and strategies.
National Business Coalition on Health: NBCH is a national membership organization representing employer- and purchaser-led health care coalitions that is dedicated to value-based purchasing of health care.
Midwest Business Group on Health: MBGH is one of the nations leading non-profit business groups. It represents more than 115 large, public, and private employers providing health benefits to more than 4 million employees and their family members.
St. Louis Area Business Health Coalition: BHC has more than 40 employers seeking to improve the health of their employees and family members enhance the overall quality and value of their investments in health benefits.
Pacific Business Group on Health: PBGH is one of the oldest regional business groups and helps purchasers nationwide improve the quality of health care and moderate health care cost increases. It has 60 member companies providing health insurance to 10 million Americans and their dependents.
Insure.com is a for-profit resource for consumers seeking information on home, health, and auto insurance and guidance on how to find an appropriate insurance policy. It is a subsidiary of QuinStreet, Inc., a company that matches consumers seeking products online. In November 2019, Insure.com released a report on high-deductible health plans.
Although the nation’s health care foundations may serve many different fields, such as health services, policy research, and public health, their work often supports the development and use of evidence to increase the quality, accessibility, and value of health care, all of which are important to employers and health insurers.
The Milbank Memorial Fund is an endowed foundation that provides nonpartisan analysis on state health policy. For journalists, the fund publishes The Milbank Quarterly, a peer-reviewed journal covering population health and health policy.
The Commonwealth Fund: Founded in 1918, the Commonwealth Fund promotes a high-performing health care system that improves access to care, quality of care, and efficiency, particularly for those who are most vulnerable, such as those with low-incomes, the uninsured, minorities children, and the elderly.
Kaiser Family Foundation: Founded in 1991, KFF is dedicated to filling the need for trusted, independent information on the major health issues facing our nation and its people. The foundation is not associated with Kaiser Permanente or Kaiser Industries.
The Milbank Memorial Fund is an endowed foundation that provides nonpartisan analysis on state health policy. For journalists, the fund publishes The Milbank Quarterly, a peer-reviewed journal covering population health and health policy. The fund also publishes reports, issue briefs and case studies.
Missouri Foundation for Health: MFH is a conversion foundation created in 2000. It’s one of the largest of its kind in the country and includes in its focus identifying and filling the gaps in the myriad public and private health care services already available to the uninsured and underinsured in its region.
National Institute of Health Care Management: A nonprofit, nonpartisan organization, the NIHCM foundation conducts research, policy analysis and educational activities on a variety of health care issues and fosters dialogue between the private health care industry and government. It also awards grants each year for excellence in health care research and journalism.
Robert Wood Johnson Foundation: RWJF is the nation’s largest philanthropy devoted solely to the public’s health, and its work includes Aligning Forces for Quality (AF4Q), an effort in 16 geographic areas in which it works with employers and others to improve efficiency and the delivery of care.
Medicaid and CHIP Payment and Access Commission. MACPAC is a non-partisan agency that is part of the legislative branch of the U.S. government that provides policy and data analysis and makes recommendations to Congress, the Secretary of the U.S. Department of Health and Human Services, and the states on issues affecting Medicaid and the State Children’s Health Insurance Program (CHIP). For journalists, its most recent reports can be timely and topical such as on the 340B drug pricing program (May 2018), the Medicaid work requirement (June 2018) and Medicaid payment for outpatient prescription drugs (May 2018).
The Federal Register is a daily publication of the Office of the Federal Register of the National Archives and Records Administration. For journalists, the site is an excellent source for government agency’s rules, proposed rules, and public notices. It is published daily, except weekends and federal holidays.
Medicaid and CHIP Payment and Access Commission. MACPAC is a non-partisan agency that is part of the legislative branch of the U.S. government that provides policy and data analysis and makes recommendations to Congress, the Secretary of the U.S. Department of Health and Human Services, and the states on issues affecting Medicaid and the State Children’s Health Insurance Program (CHIP).
Ober Kaler: This firm specializes in business and health law and has an extensive practice devoted to human resources and benefits law.
The Partnership to Fight Chronic Disease (PFCD) represents patients, providers, community organizations, businesses, labor groups and health policy experts seeking to raise awareness of the leading cause of death, disability, and rising health care costs: chronic disease. Among the issues that PFCD addresses are the factors that cause health care and insurance costs to rise.
The Tennessee Justice Center promotes access to affordable health care for all Tennesseans and works on children’s health, COVID-19, health justice, health equity and nutrition. In April 2021, the center joined other groups in filing a lawsuit challenging the federal Department of Health and Human Services’ approval of the TennCare III project. It limited the amount of federal funding available for Medicaid services and allowed state officials to restrict coverage of prescription drugs.
The Century Foundation is an independent think tank focusing on progressive policies and research on economic and racial and gender equity in education, health care, work and other areas.
The Geneva Association is an international think tank on insurance that seeks to identify early ideas and emerging debates on political, economic and societal issues concerning health and other types of insurance.
The Maternal Health Hub compiles resources and promotes best practices for advancing equitable and high-value maternity care. The Health Care Transformation Task Force operates this nonprofit organization with funding from The Commonwealth Fund.
The Cato Institute is a libertarian think tank dedicated to individual liberty, limited government and free markets. For journalists, the institute publishes reports on health care workforce reform, the COVID-19 pandemic and health reform, among other health topics. Cato says it does not do lobbying, back political candidates, engage in political activities, associate with any political organization or party or accept government funding.
Economic Policy Institute. EPI is a nonprofit, nonpartisan think tank that promotes the interests of workers in economic policy debates and tracks health insurance enrollment data.
The Open Markets Institute is an independent nonprofit research organization that promotes open, competitive markets and outlines the dangers of monopolization for policymakers, academics and the public. Among its areas of focus is health and the public interest. OMI says it does not take funding from corporations, relying instead on foundations and individual donors.
Guroo.com. Using data on care for 40 million insured individuals from the Health Care Cost Institute, an independent, nonprofit research organization, Guroo.com aims to give consumers information on health care costs and quality. It says it has national, state and local prices.
The Bowman Family Foundation is a nonprofit organization whose primary mission is to improve the lives of people with mental illness. It also provides funding to support the education and welfare of children and is the managing member of its subsidiary, The Mental Health Treatment and Research Institute LLC, which funds research into mental health treatment.
The Center to Advance Palliative Care provides tools, training, technical assistance, and connection for all clinicians caring for people with a serious illness. It is part of the nonprofit Icahn School of Medicine at Mount Sinai.
National Health Law Program. This nonprofit program has attorneys who litigate cases in state and federal courts and who are policy advocates who seek to improve access to quality health care for low-income and underserved individuals.
Physicians for Patient Protection is a nonprofit, physician-led group of practicing and retired physicians, residents, medical students, and assistant physicians who promote physician-led care for all patients and to advocate for truth and transparency regarding health care providers. Sources of funding for this group is not obvious on its website.
Alliance for Transparent and Affordable Prescriptions (ATAP). The alliance says it is funded entirely by membership dues and does not take funding from outside sources. It represents more than 20 patient and provider groups, most of which are physician organizations. The members of the alliance are concerned about the role pharmacy benefit managers (PBMs) play in the rising cost of drugs. In the news section on its site, ATAP tracks states that have passed laws regulating PBMs.
The Peterson-Kaiser Health System Tracker. The Peterson Center on Healthcare and the Kaiser Family Foundation monitor and report on how well the U.S. healthcare system performs in terms of quality and cost.
IPRO is a national, nonprofit health care quality improvement organization that provides quality improvement oversight services to managed care plans delivering care to Medicaid members and works with government agencies, health care providers and consumers to implement health policies to make the health care system more efficient, equitable and cost-effective.
Community Catalyst is a nonprofit consumer advocacy organization to promote affordable, quality health care for everyone.
The National Coalition on Health Care (NCHC) represents more than 80 organizations seeking health system reform. Its members include medical societies, businesses, unions, health care providers, faith-based associations, pension and health funds, insurers and groups representing consumers and patients.
The National Association of Community Health Centers is the national advocacy organization supporting community-based health centers and advocates for the expansion of health care access for the medically underserved and uninsured. It conducts research and analysis about the work of health centers, their value to the American health care system and the overall health, in terms of costs and health care outcomes, of Americans and their communities.
The Center for Healthcare Research & Transformation is an independent nonprofit organization that seeks to transform health care research and evidence into policies and programs to advance health care delivery, the health of the population, and access to care.
The ECRI applies scientific research to identify which medical procedures, devices, drugs, and processes are best. The goal behind ECRI’s work is to improve patient care through "The Discipline of Science" and "The Integrity of Independence," the institute stays. Among the reports it issues every year are two health journalists should note: One covers the top 10 health technology hazards and the other addresses the top 10 patient safety concerns.
Patient Advocate Foundation (PAF) is a nonprofit organization that provides professional case management services to patients with chronic, life threatening, and debilitating illnesses to help them access care and health insurance when needed. PAF case managers serve as liaisons between patients and their insurers, employers or creditors to resolve insurance, job retention or debt crisis matters stemming from a diagnosis. The PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability. For journalists, PAF and the National Patient Advocate Foundation could be sources of patient sources. As the advocacy affiliate of the PAF, the NFAF translates the experiences of patients who have been denied access to affordable, quality health care into national and state policy initiatives.
Physicians for a National Health Program is the only association of physicians dedicated exclusively to implementing a sing-payer national health insurance program. As a single-issue organization with more 20,000 members and chapters nationwide, it advocates for a universal, comprehensive single-payer national insurance. The group educates physicians and other health care professionals about the benefits of single-payer, citing lower administrative costs and providing health insurance for all Americans regardless of income. For journalists, the PNHP has a variety of commentaries on its web site and will identify physicians who are ready to speak about single-payer health insurance and the failures of the current health insurance system.
The Health Initiative Coordinating Council (HICCup), a nonprofit organization that started the Way to Wellville Challenge in 2014. The challenge is five-year effort to improve health in five small cities in the United States. In an article by Wendell Potter at the Center for Public Integrity, HICCup Founder Esther Dyson said she started HICCup to address many of the inefficiencies in the health care and health insurance systems. “It’s crazy that people lose their health and then have to pay so much in agony and pain and disrupted lives, not to mention money, to recover it—if they ever do,” she told Potter. HICCup solicited applications from 42 cities in 26 states and chose to focus on Clatsop County, Ore.; Muskegon, Mich.; Lake County, Calif.; Niagara Falls, N.Y; and Spartanburg, S.C.
Catalyst for Payment Reform (CPR) is an independent, nonprofit corporation working for large employers and other health care purchasers to foster improvements in payment for health services and to promote higher-value health care. CPR seeks to promote and reward high‐quality, patient‐centered care that is cost‐effective and reduces disparities; to ensure patients receive the “right care, at the right time, from the right provider,” incorporating the values and preferences of patients; to foster improvement and innovation; and, to slow the growth of the cost of health care.
Families USA, a nonprofit organization, says it is a national voice for health care consumers and that it is dedicated to achieving high-quality, affordable health care and improved health for all. Founded in 1981, Families USA has more than 50 staff members who do public policy analysis, advocacy work and collaborate with other organizations to promote a patient-centered health system. The organization also produces policy reports, fact sheets, issue briefs, and does health policy research. For journalists, one of its strengths is collecting and sharing consumers’ stories about their experience with the health system.
The National Academy of Social Insurance is a nonprofit organization that focuses on social insurance programs such as health policy, long-term care, Medicare, Medicaid, Social Security, unemployment insurance and workers' compensation and disability insurance.
The National Health Council is made up of more than 100 national health-related organizations and businesses, the NHC's core membership includes the nation’s leading patient advocacy organizations, which control its governance. Other members include professional and membership associations, nonprofit organizations with an interest in health, and major pharmaceutical, medical device, health insurance, and biotechnology companies.
The National Academy for State Health Policy (NASHP) is an independent, nonprofit organization of state health policymakers dedicated to achieving excellence in health policy and practice in the states. NASHP convenes state leaders to solve problems and share solutions, conduct policy analyses and research, disseminate information on state policies and programs, and provide technical assistance to states. The academy works on a wide range of issues including behavioral health, care coordination, children’s health, delivery system reform, insurance eligibility and enrollment, health IT, insurance exchanges, long term and chronic care, Medicaid, oral health, payment reform, population and public health, primary care and medical homes, quality and performance measurement.
The Gary and Mary West Health Policy Center is a nonprofit, non-partisan organization in Washington, D.C., that provides education and policy proposals designed to improve the health care system. Funded by philanthropists Gary and Mary West, the center is part of West Health, four organizations that seek to make high-quality health care more accessible at a lower cost to all Americans. West Health also includes the Gary and Mary West Health Institute, a nonprofit medical research organization seeking more effective ways to deliver care; the for-profit Gary and Mary West Health Investment Fund, and West Health Incubator, which invests in and provides expertise to businesses doing work similar to that the policy center. In 2014, the center funded an analysis by researchers from the Center for Studying Health System Change and RAND on price transparency. The resulting report, Healthcare Price Transparency: Policy Approaches and Estimated Impacts on Spending (pdf), showed how three policy changes could save $100 billion over ten years.
The APCD Council is a collaborative of government, private, nonprofit, and academic organizations focused on improving the development and deployment of state-based all payer claims databases (APCDs). The council provides technical assistance to states developing these databases and is coordinated by the Institute for Health Policy and Practice (IHPP) at the University of New Hampshire (UNH) and the National Association of Health Data Organizations (NAHDO). It has an interactive map of the United States showing where states have developed these databases and the APCD Showcase APCD Showcase, a collection of examples from state databases.
NASHCO (National Alliance of State Health Co-Ops) is a trade association for the nonprofit health insurance co-ops formed after the passage of the Affordable Care Act. The ACA included provisions for co-ops, which are nonprofit consumer oriented and operated plans (co-ops) that offer health insurance and operate to stimulate competition among health insurers. These member-operated health plans were established in 24 states although one has since disbanded.
The Center for Advancing Health (CFAH) seeks to increase consumer’s engagement in their health care. By listening to patient perspectives, the center’s staff develops resources to help all consumers participate fully in their health and health care. The center also publishes the Health Behavior News Service, which covers peer-reviewed studies on health disparities, patient engagement research, and the effects of behavior on health. Founded in 1992, this nonprofit organization in Washington, D.C., gets support from individuals and foundations.
Fellows at the University of Pennsylvania’s Leonard Davis Institute analyze the medical, economic, and social issues that influence how health care is organized, financed, managed, and delivered in the United States.
The National Committee for Quality Assurance (NCQA) is a private, nonprofit organization founded in 1990 that is dedicated to improving health care quality. NCQA develops quality standards and performance measures for many health care entities, including health plans and physician groups, that allow these entities to measure quality, analyze results, and improve patient outcomes. Among its undertakings are the Healthcare Effectiveness Data and Information Set (HEDIS), a tool most health plans use to evaluate their performance against 75 measures. Employers use HEDIS scores to evaluate plans and compare one against others. NCQA also produces the annual State of Health Care Quality.
The Health Care Incentives Improvement Institute (HCI3) seeks to improve health care quality and value by introducing evidence-based financial incentive programs and by redesigned payments to provides to make them more equitable and effective. HCI3 is a nonprofit organization whose board of directors includes physicians, employers, and health plan executives. The organization says it has created a range of programs to:
Measure health outcomes
Reduce preventable defects in care delivery
Promote a team-based approach to caring for patients
Realign provider payment incentives around quality
Reward excellence in care delivery
Report examines steps governors, Medicaid directors can take to improve health care delivery in the states
The State Health Care Cost Containment Commission, a project of the University of Virginia’s Miller Center, released a report: Cracking the Code on Health Care Costs, that examines how governors Medicaid directors, insurance commissioners, and human resource directors can improve the delivery of care in the states. The report promotes the idea that care can be more integrated, coordinated, patient-centered and cost-effective. It is written for state health care leaders across the nation and should serve as a resource for journalists covering state health reform efforts.
In April 2021, the American College of Physicians and the American Heart Association formed a partnership to launch a new publication, Annals of Internal Medicine: Clinical Cases. The digital, open access, peer-reviewed journal will publish case reports for clinicians in all areas of medicine.
America’s Physician Groups is an advocacy organization that supports physician groups that assume responsibility for clinically integrated, comprehensive and coordinated healthcare on behalf of patients. Simply, we are taking responsibility for America’s health.
National Association of Specialty Pharmacy. The NASP is a non-profit trade organization representing specialty pharmacies. It develops and delivers continuing professional education and specialty certification.
CAPG is an association that represents 300 multispecialty medical groups and independent practice associations in 44 states, the District of Columbia and Puerto Rico that practiced capitated and coordinated care. For more than two decades, CAPG members have operated under a capitated payment system that the association says delivers patient-centered, coordinated, and accountable care to patients.
Public policy organizations
The Greenlining Institute is a public policy, research, and nonprofit advocacy organization that seeks to advance economic opportunities for people of color. In March 2021, Greenlining published a report showing how the COVID-19 pandemic hit people of color hardest and increased medical debt in those communities.
The State Health Access Data Assistance Center (SHADAC) provides data on health policy and health economics to state health policy officials and other audiences. It gets funding from the Robert Wood Johnson Foundation and is part of the Health Policy and Management Division of the School of Public Health at the University of Minnesota.
Doctors for America includes 18,000 physician and medical student members seeking to improve health of U.S. residents and to ensure that everyone has affordable, high quality health care.
Medicare Payment Advisory Commission (MedPAC) is a nonpartisan agency that provides the U.S. Congress with analysis and policy advice on payments Medicare makes to private health plans participating in the Medicare Advantage program and to individual providers getting fee-for-service payment. In its thorough reports, MedPAC analyzes issues related to access to health care services for Medicare members and the quality of care Medicare providers deliver.
CAQH tracks trends and measures the effect of shifting from manual transactions in health care to electronic transactions.
Trust for America’s Health (TFAH) is a non-partisan public health policy, research and advocacy organization that reports on the health and well-being of all and says illness prevention and health equity. TFAH takes no government or industry funding, relying instead on grants.
The Center on Budget and Policy Priorities is a nonpartisan research and policy institute which works at the federal and state levels on fiscal policy and public programs that affect low- and moderate-income families and individuals. Its health section covers health care and health insurance.
A study from the RAND Corporation published in JAMA Open Network, “Trends in Low-Value Health Service Use and Spending in the U.S. Medicare Fee-for-Service Program, 2014-2018,” showed that spending on low-value health care services for fee-for-service Medicare recipients dropped only slightly from 2014 to 2018. This modest decline came despite a national campaign to educate health care providers about wasteful care and wider use of payment strategies to discourage such care. From 2014 to 2018, the proportion of study participants who got any of 32 low-value services decreased from 36.3% to 33.6% and annual spending per 1,000 individuals on low-value care decreased from $52,766 to $46,922.
A report from the National Center for Health Statistics, “Multiple Chronic Conditions Among Veterans and Nonveterans: United States, 2015–2018,” showed the prevalence of multiple (two or more) chronic conditions among veterans and nonveterans and examined whether differences in sociodemographic factors, smoking behavior and body mass index would explain differences in veterans’ health status. Among adults aged 25 and over, the age-adjusted prevalence of multiple chronic conditions was higher among male and female veterans compared with nonveterans, the report noted.
Improving the prognosis of health care in the USA. Researchers writing in The Lancet explain how a universal payment system, such as that contained in the Medicare for All Act, has the potential to cut the national health expenditure in the United States by 12 percent, or about $450 billion annually, based on the value of the U.S. dollar 2017. “The entire system could be funded with less financial outlay than is incurred by employers and households paying for health care premiums combined with existing government allocations,” the researchers wrote. In addition, such a shift would save more than 68,000 lives and 1.73 million life-years annually when compared again the current system.
This interactive map from Health Research Institute (HRI) provides state-by-state predictions of market filings for 2015, forming a preliminary picture of who will participate in health exchanges and what premiums might look like.
Catalyst for Payment Reform report This report from CPR, titled Using Education, Collaboration, and Payment Reform to Reduce Early Elective Deliveries: A Case Study of South Carolina’s Birth Outcomes Initiative, examines how the South Carolina Medicaid program used a policy of non-payment for early elective deliveries to improve birth outcomes. After the state Medicaid program formed a partnership with the state’s largest commercial insurer, the two sides decided not to pay for certain early elective deliveries and thus saved millions of dollars in neonatal intensive care unit costs and other charges. South Carolina was the first state in the nation to adopt such a program, CPR said.
The Center for Health Information and Analysis (CHIA) is a state agency in Massachusetts that collects financial and patient-level data from Massachusetts payers and providers. Data submissions are normalized to ensure that they are complete and valid and to allow research and analysis of payers and providers.
America’s Health Insurance Plans. AHIP is a trade association for health insurers that lobbies for health insurers in Congress and state legislatures and before federal and state policy makers. It also develops policy positions on bills and regulations and works with member insurers to advocate for the industry’s federal legislative and regulatory priorities in Washington.