December 2009

Grant Results

SUMMARY

Between 2000 and 2004, the Institute of Medicine (IOM) of the National Academy of Sciences, Washington, studied how the lack of health insurance affects individuals, families, communities and the nation and produced and disseminated six reports analyzing these consequences.

Key Results
The project accomplished the following:

  • The IOM produced six reports analyzing how the lack of insurance coverage affects communities and the nation as well as uninsured individuals and their families.
  • The IOM and the National Academies' Office of News and Public Information disseminated thousands of copies of the reports; posted the complete text of each on the Web and produced various written and electronic materials designed to draw attention to the findings.
  • While there was no formal effort to measure the reports' impact, project co-directors said the anecdotal evidence indicated a positive effect on public views of the coverage issue.

Funding
The Robert Wood Johnson Foundation (RWJF) funded the 42-month project with a $3.7-million grant between September 2000 and February 2004.

 See Grant Detail & Contact Information
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THE PROBLEM

Numerous studies have established that people without health insurance are more likely to delay or forgo needed medical care and experience worse health outcomes. However, these and other consequences of being uninsured are not well known.

A 1999 opinion poll by the Harvard University School of Public Health found that 57 percent of the public believed the uninsured are able to get the health care they need when they need it. RWJF funded the poll (ID# 030110), which also showed that many Americans are unaware of the large number of people who lack insurance. Only 28 percent of Americans knew that the uninsured population numbered 40 million. (As of 2003, the number had increased to 45 million, according to the U.S. Census Bureau.)

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BACKGROUND

In 1996, the IOM began a multiyear assessment of the quality of U.S. health care. The IOM produced a 1999 report on preventable medical errors (entitled To Err is Human: Building a Safer Health System) that received widespread attention in the popular media as well as professional circles.

The IOM's work on quality showed a significant relationship between quality of care received and health insurance and spurred the decision to conduct a separate study that would address all facets of the coverage problem, including indirect social and economic impacts of insurance coverage as well as the direct effects on individuals.

The IOM is both an honorific membership organization and a policy research organization that provides scientifically informed analysis and evidence-based advice to the nation on matters of medicine and health and is a component of the National Academy of Sciences. Although not a government agency, it has a responsibility to advise the federal government on medical issues.

Generally, the IOM evaluates and synthesizes studies done by others rather than conducting original research of its own. The organization does its work through committees of experts who serve without compensation. Reports go through a peer-review process before release to the public.

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RWJF STRATEGY

One of RWJF's major goals is to assure that all Americans have access to quality health care at reasonable cost. To further that goal, RWJF over the years has pursued various strategies to expand insurance coverage. One strategy is developing and communicating information aimed at raising awareness of the coverage problem among both policy-makers and the public, and stimulating policy solutions.

In the late 1990s and early 2000s, RWJF undertook a series of activities designed to engage the public more fully in the coverage issue and raise the problem's priority on the national agenda. As part of this effort, RWJF was interested in supporting a rigorous analysis of the health, economic and social consequences of being uninsured and communicating the findings in a manner that would have an impact on policy-makers, opinion leaders and the general public.

RWJF leaders knew that the IOM was also interested in the coverage problem and considered the IOM an ideal choice to undertake the uninsurance study given the respect the organization enjoys in both the scientific community and health policy world. The response to the report on medical errors attested to the impact that an IOM study could have.

However, RWJF personnel understood that insurance coverage is not, intrinsically, as compelling a subject as medical error. Although the National Academies include a communications staff responsible for releasing reports to the media, RWJF wanted to enlist the services of outside public relations professionals to mount a comprehensive communications campaign to promote the IOM's findings.

A key component of RWJF's communications strategy was that instead of one large report at the end of the grant period, the IOM would issue a series of reports over the life of the project, each one focused on a specific topic. The aim was a multi-report approach to increase attention to the research findings.

In July 2000, the RWJF Board of Trustees authorized spending up to $4.9 million on the project over three years, later extended to 42 months. The authorization included:

  • $3.7 million in grant funds to the IOM to produce six reports exploring different aspects of the coverage problem, following a six-month planning period.
  • $1.2 million to a public relations firm to develop a communications strategy for the reports and maximize the attention they received.

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THE PROJECT

Organization of the IOM Study

The IOM began its work by appointing a 16-member Committee on the Consequences of Uninsurance to select six report topics, oversee the study and issue the reports. Mary Sue Coleman, now president of the University of Michigan, and Arthur L. Kellermann, chair of the department of emergency medicine at Emory University School of Medicine, co-chaired the committee. Academics and business executives in health care-related fields filled the other slots. For the membership list, see Appendix 1.

The committee considered various potential topics for the six reports, including the effect of a lack of insurance on specific chronic conditions and on public health generally. Before selecting the final six topics, the committee held a full-day workshop at which researchers, health care executives and other experts presented their views on the coverage problem, including ways in which public understanding of health insurance issues could be improved. (See Bibliography for workshop details.) Also, the IOM posted possible report topics on the project Web site and solicited comment from the public.

Working with IOM staff and consultants from the communications firm of Porter Novelli, the committee in early 2001 settled on the following report topics and release dates:

  1. An overview of the coverage problem and introduction to the report series, September 2001.
  2. The health consequences for the uninsured individual, May 2002.
  3. The consequences for the health, psychosocial and financial condition of families with uninsured members, September 2002.
  4. The health and economic impact of large uninsured populations on communities, winter 2003.
  5. The national costs of sustaining the uninsured, spring 2003.
  6. Criteria recommended by the committee for assessing health care reform proposals, summer 2003.

To review the research literature, evaluate the evidence and prepare the individual reports, the IOM formed six subcommittees, one for each report. The subcommittees included both full committee members and external appointees from the research community, industry and government.

Paid consultants assisted the committee and subcommittees, preparing background papers on technical areas, analyzing data and synthesizing the research literature. In addition, the subcommittees heard presentations by experts from a wide range of disciplines.

The IOM's staff members conducted literature searches, assembled a Bibliography of relevant articles and studies, helped draft and edit the reports and maintained a research database.

For each report, the IOM formed a panel of independent reviewers to read the draft version and make written comments, which were addressed before the report was issued publicly.

The Study Process

For the first three reports, the committee and subcommittees based the findings almost exclusively on existing research and epidemiological data. For example, project personnel evaluated more than 250 studies to determine the adult and pediatric health outcomes that result from a lack of coverage. Altogether, the project made use of more than 1,000 source documents, according to Wilhelmine Miller, project co-director.

However, for the fourth and fifth reports—those focused on the consequences for communities and the nation—the committee found the published research limited and commissioned three pieces of original research:

  • Two analyses of the effect of local uninsurance rates on the availability of hospital services in communities, by Darrell Gaskin of Johns Hopkins University and Jack Needleman of Harvard University.
  • An economic analysis of the value of health lost to the U.S. population due to the lack of insurance, by Elizabeth Richardson Vigdor of Duke University.

These analyses, which the IOM funded with its RWJF grant, helped inform the findings of the fourth and fifth reports respectively. (See Findings, Conclusions and Recommendations.) The reports' appendices described the methodology and results of these commissioned studies.

In addition, at the IOM's request, RWJF separately funded research by the New York Academy of Medicine into how family dynamics—including family structure, levels of stress, psychological well-being and risk-taking attitudes—influence health insurance coverage, access to care and use of health services. The IOM found literature in this area sparse and wanted the new study to beef up the project's research base.

Under a $133,283 RWJF grant (ID# 042099), New York Academy of Medicine investigators analyzed two national surveys dealing with health care. The IOM report on family impacts incorporated a limited amount of the New York Academy study. (Appendix 2 summarizes the study process and findings.)

Initially, project leaders expected each of the six reports to be a monograph ranging from 80 to 100 pages. Once into the work, however, the committee saw that the body of research and the need to satisfy the IOM's peer-review process required the reports to be far longer.

In another deviation from original plans, the committee delayed publication of the sixth report until early 2004, and RWJF extended the grant period by six months to accommodate the change. The delay allowed use of new insurance coverage statistics from the U.S. Census Bureau as well as more time to plan for dissemination of the project's final product. (See Communications.)

Porter Novelli's Role
Through a competitive process, RWJF selected Porter Novelli, a Washington-based communications firm, to help disseminate the IOM findings and reports through:

  1. media outreach
  2. creation of a Web site on the uninsured
  3. cooperative educational efforts with other organizations interested in advancing the uninsured issue.

In October 2001, RWJF awarded Porter Novelli a six-month contract (ID# 039965) to obtain relevant market research, devise a dissemination strategy and begin work on the Web site. RWJF anticipated that on completion of this initial stage, Porter Novelli would receive a second, larger contract to implement the strategy and complete the Web site.

Porter Novelli personnel reviewed public opinion data and other market research pertaining to the coverage issue and conducted eight focus groups designed to help identify specific aspects of the problem that the institute reports should focus on.

Four of the focus groups were in Washington with congressional staff and other policy leaders, and two each were in Chicago and Richmond, Va. with citizens engaged in political and social issues. The focus group participants voiced support for reducing the number of uninsured and identified "themes" that they found helpful in understanding the issue. For example, the message that people "who lack insurance often do not get the medical care they need" ranked highest among both policy leaders and engaged citizens, Porter Novelli reported.

The firm also drafted a three-year strategic plan for promoting the IOM's reports.

Following RWJF's selection of Porter Novelli, the IOM—using RWJF grant funds and with RWJF's concurrence—contracted with the same firm to provide communications advice directly to the project. The IOM has strict confidentiality requirements and will not share information on a developing study with an outside entity unless the entity is working for the IOM and has signed a confidentiality agreement.

In their capacity as IOM consultants, Porter Novelli personnel briefed the committee on the focus group results and other market research findings, including common public misperceptions of the coverage problem and the relative strength of messages to improve understanding of the issue. As the committee developed its plan, the firm offered strategic advice, including recommending options for the individual report topics. Also, during the drafting of the first report, the firm provided editorial advice on effective communication of the findings.

An Early End to Porter Novelli's Involvement. The IOM's confidentiality requirements—aimed at protecting the impartiality of the research and the reputation of the organization—extend to the financial sponsor of a study. Thus, RWJF was not privy to the committee's deliberations and could not get a preview of the findings significantly in advance of their public release. IOM rules provide that a sponsor may not receive a report more than 14 days before the official release date, according to Miller, the project co-director. What's more, under its confidentiality agreement with the IOM, Porter Novelli could not share its inside knowledge of the project with RWJF, which was funding the firm's work.

In the view of RWJF personnel, the IOM's confidentiality requirements made it difficult to carry out an aggressive communications campaign coordinated with the report releases, since planning a comprehensive promotional effort requires knowing well in advance exactly what is to be promoted. In addition to precluding collaborative planning with the IOM, the prohibition on information sharing limited RWJF's ability to manage Porter Novelli's work.

RWJF therefore decided that under the circumstances, a separate communications campaign was not feasible. Consequently, RWJF dropped its plan for a second contract with Porter Novelli. RWJF subsequently used the remainder of the $1.2-million communications allocation to help fund the first Cover the Uninsured Week, a week-long national public education campaign in March 2003 to raise awareness of the uninsured problem and elevate the issue on the national agenda (Communications Project ID# 044968). (RWJF supported a second Cover the Uninsured Week in May 2004 and plans another for May 2005.) RWJF also funded continued dissemination of the six reports through ID# 045205, an internal grant through which RWJF could contract with communications firms for this purpose.

Once RWJF curtailed its separate communications effort, the IOM ended its own relationship with Porter Novelli.

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RESULTS

The project accomplished the following:

  • The IOM produced six reports analyzing how the lack of insurance coverage affects communities and the nation as well as uninsured individuals and their families. The book-length volumes—ranging from 169 to 278 pages, including appendix and Bibliography—focus on the topics as planned at the project's outset. For the titles, release dates and some of the key points of each report, see Findings, Conclusions and Recommendations. In Kellermann's view (the committee co-chair), the series presented the most comprehensive evaluation of the coverage issue to date and broke new research ground in the area of community impacts.
  • The IOM and the National Academies' Office of News and Public Information disseminated thousands of copies of the reports; posted the complete text of each on the Web and produced various written and electronic materials designed to draw attention to the findings. Although not to the extent RWJF personnel considered achievable with a separate communications campaign, the reports received attention in national and regional media and professional journals. The amount and quality of coverage increased with each successive report, the IOM reported to RWJF. For an account of the promotional efforts and results, see Communications.
  • Although Porter Novelli's phase of the project was short-lived, its market research influenced the committee's work. The focus group findings helped the committee understand the coverage issue as perceived by the public and policy-makers, and that information helped the panel structure the reports, Kellermann says. As a result of the firm's work, the first report juxtaposed popular "myths"—such as the belief that only a relatively few people are uncovered and that they get adequate care anyway—with factual information. Kellermann says he used this myth/fact construct also in his public presentations on the issue, including congressional testimony.
  • While there was no formal effort to measure the reports' impact, project co-directors Miller and Dianne M. Wolman said the anecdotal evidence indicated a positive effect on public views of the coverage issue. They cited personal feedback received by IOM staff and committee members, robust press coverage of the final report and the interest shown by professional and advocacy groups in using the reports and related materials. Local, state and federal policy-makers commented on the reports' educational value, the co-directors reported to RWJF.

Findings, Conclusions and Recommendations

The title, release date and some of the key conclusions, findings and/or recommendations of each report follow:

Coverage Matters: Insurance and Health Care, October 11, 2001

  • Health insurance is neither necessary nor sufficient to obtain health care, yet coverage remains one of the most important factors in obtaining access to health services. People without health insurance are much more likely than those who have health insurance to go without needed care, including preventive services and regular care for chronic conditions, and are less likely to have a regular source of care.
  • Americans persistently underestimate the size and diversity of the uninsured population and the potentially adverse economic and health consequences of being uninsured.
  • Although working improves the chances that one and one's family will have insurance, members of families with two full-time wage earners have almost a one-in-ten chance of being uninsured.
  • Most people, more than four out of five, choose to enroll in health insurance when it is offered on the job, including most lower-income workers and most young adults who work. Many of the uninsured have not been offered workplace coverage, and some who are offered a plan cannot afford the premium.

Care Without Coverage: Too Little, Too Late, May 21, 2002

  • Having health insurance is associated with better health outcomes for adults and with their receiving appropriate care across a range of preventive, chronic and acute care services. Adults without health insurance coverage die sooner and experience greater declines in health status over time than do adults with continuous coverage.
  • Adults with chronic conditions and those in late middle age stand to benefit the most from health insurance coverage in terms of improved health outcomes because of their high probability of needing health care services.
  • Racial and ethnic minorities and lower-income adults would particularly benefit from increased health insurance coverage because they more often lack stable health insurance coverage and have worse health status. Increased coverage would likely reduce some of the racial and ethnic disparities in the use of appropriate health care services and may also reduce disparities in morbidity and mortality.
  • Health insurance that affords access to providers and includes preventive and screening services, outpatient prescription drugs and specialty mental health care is more likely to facilitate people receiving appropriate care.
  • Broad-based health insurance strategies across the entire uninsured population would be more likely to produce these benefits than would "rescue" programs aimed only at the seriously ill.

Health Insurance Is a Family Matter, September 18, 2002

  • The whole family can be affected by any member's lack of insurance. If anyone in the family is uninsured, the financial and emotional well-being of the entire unit is at risk, as well as the health of those who are uninsured.
  • Employment-based and public insurance programs leave gaps in coverage for many families. The families in which some or all members lack insurance disproportionately include those with lower incomes, a single parent and racial and ethnic minorities.
  • Purchasing health insurance for uninsured family members is not practical for most of those families because of their limited incomes and lack of assets.
  • Uninsured families are less likely to use any medical services than are insured families, and those who do use fewer services on average. When uninsured families are affected by illness or injury, they are also more likely to have high health expenses relative to income.
  • Parents' insurance status is an important determinant of their children's insurance and health care. Federal programs have expanded coverage to children, but insuring children may not be enough. Insuring parents is an important part of the process of bringing health care to children.

A Shared Destiny: Community Effects of Uninsurance, March 6, 2003

  • A community's high uninsured rate has adverse consequences for the community's health care institutions and providers. These consequences reduce access to clinic-based primary care, specialty services and hospital-based care, particularly emergency medical services and trauma care.
  • Research is needed to more clearly define the size, strength and scope of adverse community effects that are plausible consequences of uninsurance. These include potentially deleterious effects on access to primary and preventive health care, specialty care, the underlying social and economic vitality of communities, public health capacity and the overall population health.

Hidden Costs, Value Lost: Uninsurance in America, June 17, 2003

  • The best available estimate of the value of uncompensated health care service provided to persons who lack health insurance for some or all of a year is roughly $35 billion annually, about 2.8 percent of total national spending for personal health care services.
  • Public subsidies to hospitals amounted to an estimated $23.6 billion in 2001, closely matching the cost of uncompensated services that hospitals reported providing. Overall, public support from federal, state and local governments accounts for between 75 and 85 percent of the total value of uncompensated care estimated to be provided to uninsured people each year.
  • There is mixed evidence that private payers subsidize uncompensated care. The impact of any such shifting of costs to privately insured patients and insurers is unlikely to be so large as to affect the prices of health care service and insurance premiums.
  • The costs of direct provision of health care services to uninsured individuals fall disproportionately on the local communities where they reside.
  • The committee's best estimate of the aggregate annualized cost of the diminished health and shorter life spans of Americans who lack health insurance is between $65 and $130 billion for each year of health insurance forgone. These are the benefits that could be realized if extension of coverage reduced the morbidity and mortality of uninsured Americans to the levels of insured individuals with similar characteristics such as income and gender.
  • Not only those who lack coverage, but others in their communities as well, may experience reduced access to and availability of primary care and hospital services. This results from relatively high rates of uninsurance that imperil the financial viability of health care providers and institutions.
  • Estimates of the cost of the additional health care that would be provided to the uninsured once they became insured range from $34 to $69 billion per year. This assumes no structural changes in the systems of health care financing or delivery, average scope of benefits or provider payment. This incremental cost of services amounts to 2.8 to 5.6 percent of national spending for personal health care services in 2001.
  • The estimated benefits in terms of the value of healthy life years gained by providing coverage to those currently uninsured are likely greater than the incremental societal costs of the additional health care services that they would receive if insured. The cost-effectiveness of the additional health care that the uninsured population would use with coverage is comparable to that of many other health-enhancing and life-extending interventions.

Insuring America's Health: Principles and Recommendations, January 14, 2004

  • The committee recommends that these [five] principles be used to assess the merits of current proposals and to design future strategies for extending coverage to everyone.
    1. Health care coverage should be universal.
    2. Health care coverage should be continuous.
    3. Health care coverage should be affordable to individuals and families.
    4. The health insurance strategy should be affordable and sustainable for society.
    5. Health care coverage should enhance health and well-being by promoting access to high-quality care that is effective, efficient, safe, timely, patient-centered and equitable.
  • The committee recommends that the president and congress develop a strategy to achieve universal insurance coverage and establish a firm and explicit schedule to reach this goal by 2010.
  • The committee recommends that until universal coverage takes effect, the federal and state governments provide resources sufficient for Medicaid and the State Children's Health Insurance Program to cover all persons currently eligible and prevent the erosion of outreach efforts, eligibility, enrollment and coverage.

Communications

Committee members, IOM staff and employees of the National Academies' Office of News and Public took a number of steps to promote the six reports and make the findings accessible to the public and policy-makers, including:

  • Disseminating 5,000 free copies of each report plus 1,000–2,000 copies of a separate executive summary of each report and 500-1,500 copies of four- and eight-page summaries, some in Spanish. In addition, the National Academies Press sold copies of the reports through its Web site.
  • Making bulk shipments of reports to organizations involved in coverage-related research, legislation or advocacy for distribution to their members and workers. Some national organizations interested in the coverage issue provided their mailing lists to the IOM for use in the distribution effort while other groups mailed complimentary copies directly to their members.
  • Making presentations on the committee's work to a range of private groups and governmental bodies, including a number of briefings for congressional staff. Staff and committee members continued to receive and fulfill speaking invitations following the project's completion.
  • Producing a CD-ROM with the reports and report summaries for distribution to congressional offices and federal, state and local government officials.
  • Hiring Home Front Communications to produce a video news release to accompany publication of the final report. The company promoted the video's use in local news markets.
  • Increasing attention on the final report by conducting the release briefing at the National Press Club in Washington. The event included remarks by former Senator Robert Dole (R-Kan.) and former Representative Paul Rogers (D-Fla.) and drew 125 people, including news media representatives. The event was broadcast live via satellite.
  • Maintaining a project Web site that provided various materials for downloading, including the four- and eight-page report summaries, the opening statements of participants at release events and op-eds. In addition, the site linked to:
    1. A searchable version of each report.
    2. A National Academies audio webcast of the public release events.
    3. A video webcast by the Henry J. Kaiser Family Foundation.
    The materials continued to be accessible through the Web site after the project's conclusion.

For details of many of the project's communications activities, see the Bibliography.

The IOM's early reports received some national and regional news coverage in the print media—6–10 articles per report on average—and mention in a few professional journals. The final report—presenting the committee's recommendations—got far broader coverage, which the co-directors attributed to the impact of the previous reports and to an enhanced communications strategy, notably the National Press Club event and the video news release. The co-directors reported the following responses to the final report:

  • One hundred and twenty-three TV stations in 77 markets aired the video release, reaching an estimated 6.6 million viewers.
  • Forty-three national and regional newspapers—including the New York Times, USA Today, Wall Street Journal and Washington Post—covered the release. In addition, eight wire services and 10 professional and trade association publications and news services carried news of the report.
  • The report was the focus of 18 editorials and op-ed articles in the national and regional press.
  • Six radio programs—including one on National Public Radio—interviewed committee members in connection with the report's release.
  • In January 2004, the month of the release, the project Web site received the highest number of visits of any of the IOM's Web sites. (The site had 9,725 hits, 21,503 page visits and 9,838 file downloads.)

Outside events presented a challenge to the project's communications effort. The September 11th terrorist attacks on New York and Washington forced a one-month postponement in the first report's release, which had been scheduled for September 12, 2001. Even then, media coverage of the report was more limited than for the subsequent reports. Also, the anthrax attacks on Capitol Hill in the fall of 2001 made it logistically more difficult to get the reports and related materials to congressional offices.

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LESSONS LEARNED

At the project's conclusion, co-directors Miller and Wolman reported the following lessons to RWJF:

  1. Splitting the committee's work into six reports released over the project period added momentum to the communications strategy, built public interest and knowledge of the issue over time and gave the key message resiliency. The reports had a multiplicative rather than an additive effect; the periodic repetition of the project's overall key messages tied to new evidence in each report reinforced the overall impact of the committee's work. (Project Directors)
  2. In organizing a study of this size, there is value in having a single consensus committee with drafting subcommittees. This structure permitted the application of greater substantive expertise to each IOM report while maintaining the continuity and overall responsibility of the 16 members of the full committee. Including outside technical experts on the subcommittees ensured the reports would reflect the most accurate analysis. The structure also helped prevent "burnout" on the committee; over the project's 42-months, only one of the 16 members resigned. (Project Directors)
  3. Having sufficient funding was a major factor in the project's logistical and communications success. The RWJF grant was large enough to support the involvement of one full-time IOM program officer and two senior program officers and almost a dozen outside consultants, including a professional health writer, who were needed to bring the project to a timely conclusion within budget. Also, the grant included funds to print and ship thousands of copies of the reports and related materials free of charge, permitting broad dissemination of the committee's work. For example, the IOM was able to send the reports to nonprofit organizations that are engaged in advocating coverage reform but could not afford to purchase the reports from the National Academies Press. (See Communications for further details.) (Project Directors)

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AFTER THE GRANT

In response to the recommendations in the IOM's final report, the RWJF board in October 2004 approved a three-pronged strategy calling for RWJF to:

  1. Set a priority on expanding coverage to all children and the low-income population as a first step toward the goal of achieving universal coverage by 2010.
  2. Increase opinion leaders' support for the 2010 goal.
  3. Develop policy options and build support for more fundamental systemic changes over the long term.

Detailed planning remained underway, but the strategy anticipated that in 2005 RWJF would lead a major national campaign on the coverage issue, was indeed the case. While building on the strengths of the 2003 and 2004 Cover the Uninsured Week efforts, the 2005 campaign differed by focusing heavily on the IOM's goal and recommendations.

Also, as part of the strategy, RWJF planned to explore the feasibility and strategic value of establishing a national advocacy organization for coverage issues. As the RWJF-funded Campaign for Tobacco-Free Kids did for the tobacco control movement, the new organization would serve as a base for future campaign activities on the coverage problem. In addition, the strategy called for RWJF to play a leading role in assessing reform proposals and determining the extent to which they follow the five principles listed in the IOM's final report.

In 2008, RWJF provided additional funding to the National Academy of Sciences/Institute of Medicine. Under Grant ID# 063982, the IOM updated its previous series of reports on the consequences of uninsurance with respect to recent trends in insurance coverage, health effects of uninsurance, and the impact of uninsurance on communities.

The objective was achieved and reported in book form as well as in a summary Report Brief. The book, America's Uninsured Crisis: Consequences for Health and Health Care, provides detailed descriptions of the research methods, findings, and research bibliography.

The work conducted under Grant ID# 063982 supported the findings from the previous IOM report series on uninsurance and provided even stronger evidence that health insurance matters. This report makes it clear that people without insurance do not receive the health care they need.

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GRANT DETAILS & CONTACT INFORMATION

Project

Surveying the Consequences of Uninsurance

Grantee

National Academy of Sciences - Institute of Medicine (Washington,  DC)

  • Surveying the Consequences of Uninsurance
    Amount: $ 3,700,000
    Dates: September 2000 to February 2004
    ID#:  038739

  • Updating the 2000-04 Institute of Medicine study of the consequences of uninsurance
    Amount: $ 688,997
    Dates: April 2008 to July 2009
    ID#:  063982

Contact

Wilhelmine Miller, Ph.D.
(202) 334-1359
wmiller@nas.edu
Dianne M. Wolman, M.G.A.
(202) 334-2324
dwolman@nas.edu
Jill Eden, M.B.A., M.P.H.
(202) 334-2191
jeden@nas.edu

Grantee

New York Academy of Medicine (New York,  NY)

  • Research on Factors That Affect Health Care Coverage, Access and Use Among Families
    Amount: $ 133,283
    Dates: July 2001 to September 2002
    ID#:  042099

Contact

Gerry Fairbrother, Ph.D.
(212) 822-7398
gfairbro@nyam.org

Contractor

Porter Novelli (Washington,  DC)

  • Surveying the Consequences of Uninsurance - Communications Component
    Amount: $ 286,255
    Dates: October 2000 to August 2001
    ID#:  039965

Contact

Diana Rubin
(202) 973-5854
drubin@porternovelli.com

Web Site

http://www.iom.edu/?ID=4660

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Committee on the Consequences of Uninsurance

Mary Sue Coleman, Ph.D., Co-chair
President, University of Michigan
Ann Arbor, Mich.

Arthur L. Kellermann, J.D., M.P.H., Co-chair
Professor and Chair Department of Emergency Medicine
Director, Center for Injury Control
Emory University
Atlanta, Ga.

Ronald M. Andersen, Ph.D.
Wasserman Professor in Health Services
Chair, Department of Health Services
Professor of Sociology
School of Public Health
University of California
Los Angeles, Calif.

John Z. Ayanian, M.D., M.P.P.
Associate Professor of Medicine and Health Care Policy
Harvard Medical School
Brigham and Women's Hospital
Boston, Mass.

Robert J. Blendon, Sc.D.
Professor, Health Policy and Political Analysis
Department of Health Policy and Management
Harvard School of Public Health and Kennedy School of Government
Boston, Mass.

Sheila P. Davis, Ph.D., R.N.
Associate Professor
University of Mississippi Medical Center
School of Nursing
Jackson, Miss.

George C. Eads
Charles River Associates
Washington, D.C.

Sandra R. Hernandez, M.D.
Chief Executive Officer
San Francisco Foundation
San Francisco, Calif.

Willard G. Manning, Ph.D.
Professor, Department of Health Studies
University of Chicago
Chicago, Ill.

James J. Mongan, M.D.
President and CEO
Partners HealthCare, Inc.
Boston, Mass.

Christopher Queram
Chief Executive Officer
Employer Health Care Alliance Cooperative
Madison, Wis.

Shoshanna Sofaer, Dr.P.H., M.P.H.
Robert P. Luciano Professor of Health Care Policy
School of Public Affairs
Baruch College
New York, N.Y.

Stephen J. Trejo, Ph.D.
Associate Professor, Department of Economics
University of Texas
Austin, Tex.

Reed V. Tuckson, M.D.
Senior Vice President, Consumer Health and Medicare Care Advancement
UnitedHealth Group
Minnetonka, Minn.

Edward H. Wagner, M.D., M.P.H.
Director, MacColl Institute for Healthcare Innovation
Center for Health Studies, Group Health Cooperative
Seattle, Wash.

Lawrence Wallack, Dr.P.H.
Director, School of Community Health
College of Urban and Public Affairs
Portland State University
Portland, Ore.


Appendix 2

'Research on Factors That Affect Health Care Coverage, Access and Use Among Families' - a project funded by RWJF (ID# 042099)

Researchers at the New York Academy of Medicine examined the influence of various family dynamics on health insurance coverage, access to care and use of health services. The dynamics studied included family structure, stress levels, psychological well-being and risk-taking attitudes. The researchers also measured how parents' health insurance status affected their children's access to, and use of, health care. RWJF funded the research with a $133,283 grant (ID# 042099) at the request of the IOM, which wanted the information to help inform a study of how the lack of health insurance affects families.

Under the RWJF grant, the New York Academy of Medicine study team analyzed data from the 1999 National Survey of American Families and the 1996 Medical Expenditure Panel Survey. The National Survey of American Families is a household survey sponsored by the Urban Institute's Assessing the New Federalism Project. The survey includes information on health insurance coverage, access to care and use of health services. The Medical Expenditure Panel Survey, conducted under the auspices of the federal Agency for Healthcare Research and Quality and the National Center for Health Statistics, collects data on the health services that Americans use and how they pay for them.

The principal investigator reported the following findings to RWJF:

  • Children and parents receiving insurance through public programs have greater levels of family stress than those who are either uninsured or privately insured.
  • Insurance eligibility criteria—mainly poverty and receipt of public assistance—are the strongest predictors of enrollment in public insurance programs. By contrast, enrollment in private insurance was inversely related to poverty.
  • Uninsured parents are most likely to be foreign born and to have less than a high school education.
  • Having health insurance, regardless of whether it is public or private, is the strongest predictor of children's ability to access and use health care. However, health insurance is not sufficient to ensure access; family stress also influences the ability of parents to obtain care for their children.
  • Insured children whose mothers are also insured are more likely to receive health care than insured children whose mothers are uninsured.

Health Insurance is a Family Matter—the third report in the IOM's six-volume series on the consequences of uninsurance—incorporated a limited amount of research from this study. The study also resulted in three unpublished articles and an abstract that was accepted for presentation at the 2003 annual meetings of the Pediatric Academic Societies and AcademyHealth. (For the titles of the unpublished articles, see two articles by Fairbrother and one by Hanson in the Bibliography.)

For additional information about this research, contact Gerry Fairbrother, Ph.D., the chief investigator, at (212) 822-7398 or gfairbro@nyam.org.

(This appendix is excerpted from Grant Results on ID# 042099.)

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Books

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. America's Uninsured Crisis: Consequences for Health and Health Care. Washington, DC: National Academies Press, 2009.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Coverage Matters: Insurance and Health Care. Washington: National Academy Press, 2001.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Coverage Matters: Insurance and Health Care. Executive Summary. Washington: National Academy Press, 2001.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Care Without Coverage: Too Little Too Late. Washington: National Academy Press, 2002.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Care Without Coverage: Too Little Too Late. Executive Summary. Washington: National Academy Press, 2002.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Health Insurance is a Family Matter. Washington: National Academy Press, 2002.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Health Insurance is a Family Matter. Executive Summary. Washington: National Academy Press, 2002.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. A Shared Destiny: Community Effects of Uninsurance. Washington: National Academy Press, 2003.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. A Shared Destiny: Community Effects of Uninsurance. Executive Summary. Washington: National Academy Press, 2003.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Hidden Costs, Value Lost: Uninsurance in America. Washington: National Academy Press, 2003.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Hidden Costs, Value Lost: Uninsurance in America. Executive Summary. Washington: National Academy Press, 2003.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Insuring America's Health: Principles and Recommendations. Washington: National Academy Press, 2004.

Institute of Medicine, Board on Health Care Services, Committee on the Consequences of Uninsurance. Insuring America's Health: Principles and Recommendations. Executive Summary. Washington: National Academy Press, 2004.

All the above are also available online.

Articles

Ayanian JZ. "Uninsured and Untreated." Albany Times-Union, July 7, 2002.

Ayanian JZ. "A Tale of Two Patients." Peoria Journal Star, July 21, 2002.

Coleman MS. "A Closer Look at Uninsured Americans." Everett Herald, November 2001.

Coleman MS. "A Closer Look at Uninsured Americans." Peoria Journal Star, December 23, 2001.

Coleman MS. "Problems of Uninsured Directly Affect All Americans." USA Today, February 24, 2004.

Fairbrother G. "Commentary on IOM Report: Health Insurance is a Family Matter." Ambulatory Pediatrics, 3: 66–67, 2003.

Fairbrother G, Hanson K, Kenney G, Dubay L and Ramalingam N. "How Do Stressful Family Environments Relate to Enrollment in Health Insurance by Low-Income Children and Parents?" AcademyHealth Meeting, 20: abstract no. 296, 2003. Abstract available online.

Fairbrother G, Kenney G, Hanson K and Dubay L. "How Do Stressful Family Environments Relate to Reported Access and Use of Health Care by Low-Income Children?" Medical Care Research and Review, 62(2): 205–230, 2005. Abstract available online.

Glied S. "A Health Bargain on the Job." Los Angeles Times, October 14, 2003.

Hanson K. "Parental Insurance and Children's Access and Utilization Among Insured Children." Unpublished.

Kellermann AL. "Uninsured in America: Truth and Consequences." Atlanta Journal-Constitution, December 25, 2001.

Kellermann AL. "Cuts to Medicaid Will Hurt Health Care for Everyone." Atlanta Journal-Constitution, July 11, 2003.

Kellermann AL. "Pain and Suffering Ensued." Atlanta Journal-Constitution, October 1, 2003.

Kellermann AL. "Physician Support for Covering the Uninsured: Is the Cup Half Empty or Half Full?" Annals of Internal Medicine, 139(November): 858–859, 2003.

Kellermann AL and Fairbrother G. "Family Interdependencies and the Family Physician." Journal of the American Board of Family Practice, 16(1): 81–82, 2003.

Kellermann AL and Miller W. "Can America Afford Not To Provide Universal Health Care?" The Forward, December 5, 2003.

Miller WD, Vigdor E and Manning W. "Covering the Uninsured: What Is It Worth?" Health Affairs Web Exclusives, March 31, 2004. Available online.

Needleman J, Sofaer S, Snyder LP and Anderson R. "Community Effects of Uninsurance: What Do We Need To Know?" Unpublished.

Queram C. "Insured, Uninsured Have Shared Destiny." Wisconsin State Journal, March 30, 2003.

Queram C. "Chris Queram Comments on IOM Report." Wisconsin Hospital Association Valued Voice, February 6, 2004.

Wagner E. "Health Care A Crucial Campaign Issue." Seattle Post-Intelligencer, January 20, 2004.

Wallack L. "In My Opinion Health Insurance Must Be Made Universal." Oregonian, January 17, 2004.

Wolman DM and Miller W. The Consequences of Uninsurance for Individuals, Families, Communities, and the Nation. Journal of Law, Medicine & Ethics, 32(3): 397–403, 2004.

Reports

America's Uninsured Crisis: Consequences for Health and Health Care. Washington, DC: National Academies, available online.

Institute of Medicine. Coverage Matters: Insurance and Health Care. Washington: Institute of Medicine, 2001.

Institute of Medicine. Estar Cubierto Por Unseguro De Salud es Importante: Seguro de Salud Y Atencion Medica. Washington: Institute of Medicine, 2001.

Institute of Medicine. Atencion Medica Sin Cobertura: Si No Es Suficiente, Es Demasiado Tarde. Washington: Institute of Medicine, 2002.

Institute of Medicine. El Seguro De Salud Es Un Asunto Familiar. Washington: Institute of Medicine, 2002.

Institute of Medicine. Health Insurance Is a Family Matter. Washington: Institute of Medicine, 2002.

Institute of Medicine. A Shared Destiny: Community Effects of Uninsurance. Washington: Institute of Medicine, 2003.

Institute of Medicine. Costos Escondidos, Valor Perdido: La Falta De Seguro De Salud En Los Estados Unidos. Washington: Institute of Medicine, 2003.

Institute of Medicine. Hidden Costs, Value Lost: Uninsurance in America. Washington: Institute of Medicine, 2003.

Institute of Medicine. Un Destino Compartido: Effectos De La Falta Seguro En Individuos, Familias Y Comunidades. Washington: Institute of Medicine, 2003.

Institute of Medicine. Asegurando La Salud De Los Estados Unidos: Principios Y Recomendaciones. Washington: Institute of Medicine, 2004.

Institute of Medicine. Insuring America's Health: Principles and Recommendations. Washington: Institute of Medicine, 2004.

Institute of Medicine. Uninsurance Checklist. Assessing Proposals for Major Health Insurance Reform. Principles for Eliminating Uninsurance. Washington: Institute of Medicine, 2004.

Institute of Medicine. Fact Sheets. Washington: Institute of Medicine, 2004:

  • Assessing Proposals for Major Health Insurance Reform: Principles for Eliminating Uninsurance.
  • It Is Now Time To Extend Coverage To All. Project on the Consequences of Uninsurance: An Overview.
  • Incremental Approaches To Extend Coverage Are Insufficient. Principle: Health Care Coverage Should be Universal.
  • Health Insurance: Now You've Got It, Now You Don't. Principal: Health Care Coverage Should Be Continuous.
  • Health Insurance Is Out of Financial Reach for Most of the Uninsured. Principle: Health Insurance Should Be Affordable to Individuals and Families.
  • Uninsurance Costs the Country More Than You Think. Principle: The Health Insurance Strategy Should Be Affordable and Sustainable for Society.
  • The Uninsured Are Sicker And Die Sooner. Principle: Health Care Coverage Should Enhance Health and Well-Being by Promoting Access to High-Quality Care That Is Effective, Efficient, Safe, Timely, Patient Centered, and Equitable.
  • IOM Committee on the Consequences of Uninsurance.

Porter Novelli. Focus Group Research on Perceptions That Currently Frame the Issue of the Uninsured in America. Washington: Porter Novelli, 2001.

Porter Novelli. Three Year Strategic Plan To Promote IOM Studies on Americans Who Lack Health Insurance (Revised). Washington: Porter Novelli, 2001.

Audio-Visuals and Computer Software

Insuring Health: The First Four Reports and Summaries of the Committee on the Consequences of Uninsurance 2001–2003, CD-ROM software containing the first four reports and English-language and Spanish-language summaries. Washington: Institute of Medicine, 2003.

Insuring Health: The Six Reports and Summaries of the Committee on the Consequences of Uninsurance 2001–2004, CD-ROM software containing all six reports and English-language and Spanish-language summaries. Washington: Institute of Medicine, 2004.

Video News Release, produced by Home Front Communications to support the Institute of Medicine report Insuring America's Health: Principals and Recommendations, Washington: Home Front Communications, 2004.

World Wide Web Sites

www.iom.edu/?ID=4660. "Consequences of Uninsurance" on the Institute of Medicine Web site provides information about the Committee on the Consequences of Uninsurance and the six reports the committee produced. Washington: Institute of Medicine, 2001.

www.nas.edu/onpi. "Office of News and Public Information" on the National Academies Web Site provides general information about Institute of Medicine work in the area of insurance coverage, including the Committee on the Consequences of Uninsurance. Washington: National Academies of Science.

Presentations and Testimony

Mary Sue Coleman and Shoshanna Sofaer, congressional briefing on the report Coverage Matters: Insurance and Health Care, October 10, 2001, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs.

Arthur Kellermann, "Coverage Matters: Insurance and Health Care," to the Subcommittee on Health of the House Committee on Energy and Commerce, February 28, 2002, Washington.

Mary Sue Coleman and Edward Wagner, congressional briefing on the report Care Without Coverage: Too Little, Too Late, May 20, 2002, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs.

George Eads and Shoshanna Sofaer, congressional briefing on the report Health Insurance Is a Family Matter, September 17, 2002, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs.

George Eads and Shoshanna Sofaer, briefing of the assistant secretary for planning and evaluation, U.S. Department of Health and Human Services, on Health Insurance Is a Family Matter, September 17, 2002, Washington. Request from Deputy Assistant Secretary Eve Slater.

Wilhelmine Miller, briefing for Senator Max Baucus (D-Mont.) and staff, December 18, 2002, Washington. Telephoned request from Senator Baucus's office.

Arthur Kellermann, briefing of the Health Subcommittee of the Senate Health, Education, Labor and Pensions Committee on the report A Shared Destiny: Community Effects of Uninsurance, March 5, 2003, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs.

Harvey V. Fineberg, "Health Care for All: Finding Common Ground," to a congressional briefing organized by the American Public Health Association, March 18, 2003, Washington.

Arthur Kellermann, "A Shared Destiny: Effects of Uninsurance on Individuals, Families and Communities," to the Subcommittee on Labor, Health and Human Services and Education of the Senate Committee on Appropriations, April 30, 2003, Washington. Written request from the subcommittee's minority staff director.

James Mongan, congressional briefing on Hidden Costs, Value Lost: Uninsurance in America, June 16, 2003, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs.

Wilhelmine Miller, presentation "Hidden Costs, Value Lost" on the C-SPAN call-in show "Washington Journal," June 21, 2003, Washington. Invitation of C-SPAN.

Wilhelmine Miller, "The Uninsured—Hidden Costs, Value Lost," to the New Mexico State Legislature Health and Human Services Committee, August 4, 2003, Santa Fe, NM.

Wilhelmine Miller, "Hidden Costs, Value Lost: Uninsurance in America," to the Health Resources and Services Administration's State Planning Grants Meeting, November 4, 2003, Washington. (PowerPoint slides.)

Arthur Kellermann and Shoshanna Sofaer, congressional briefing on the report Insuring America's Health: Principles and Recommendations, January 13, 2004, Washington. No written invitation; arranged by the National Academies' Office of Congressional and Government Affairs. (PowerPoint slides.)

John Ayanian, "Health Consequences of Uninsurance: Research Findings and Policy Implications," at the Research Seminar Series, Leonard Davis Institute of Health Economics, University of Pennsylvania, January 14, 2004, Philadelphia. (PowerPoint slides.)

John Ayanian and Shoshanna Sofaer, briefing for the assistant secretary for planning and evaluation, U.S. Department of Health and Human Services, on the report Insuring America's Health: Principles and Recommendations, January 14, 2004, Washington. Request by the assistant secretary, Mike O'Grady. (PowerPoint slides.)

Shoshanna Sofaer, "Key Principles for Covering the Uninsured," to the Alliance for Health Reform, January 16, 2004, Washington. Webcast available online.

Wilhelmine Miller and Dianne Wolman, "Insuring America's Health: Principles and Recommendations," to the Democratic Leadership Caucus (health section), January 23, 2004, Washington. Request from staff member. (PowerPoint slides.)

Jack Ebeler and Shoshanna Sofaer, "Insuring America's Health: Principles and Recommendations," at a breakfast session organized by AcademyHealth, January 28, 2004, Washington.

Shoshanna Sofaer, "Insuring America's Health: Principles and Recommendations," at a symposium organized by Baruch College School of Public Affairs, February 5, 2004, New York. Proceedings available online. (PowerPoint slides.)

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Report prepared by: Michael H. Brown
Reviewed by: Kelsey Menehan
Reviewed by: Marian Bass
Program Officer: Anne F. Weiss
Communications Officer: Stuart M. Schear

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