Background on the Consumer Coalition
This concern was expressed by the Coalition in a letter to Hillary Rodham Clinton in March 1993. The letter with its attached statement of principles outlined essential elements in health care reform legislation -- consumer information, a uniform data reporting system, consumer participation, consumer protection, consumer appeals and adjudication, independent review, and consumer representation. These principles were subsequently condensed into a one page statement calling for national standards for consumer information, due process protections, public accountability, and independent external quality oversight. This Statement of Principles has served as a basis for the Coalition's advocacy efforts.
The letter also requested a meeting with the appropriate working groups within the President's Health Care Reform Task Force. The Coalition and other consumer groups met twice with the quality working group to discuss various quality oversight mechanisms and possible recommendations to the President. According to sources inside the Task Force, the Coalition's input stopped efforts to eliminate or detrimentally modify a variety of quality oversight mechanisms, and had significant influence on the overall thinking of both the working group and the Task Force on quality issues.
In an effort to ensure that members of Congress also focused attention on these critical issues, the Coalition began to generate considerable support for its principles on Capitol Hill. In May 1993, the Coalition initiated and orchestrated a Washington D.C. press conference with Representative Ron Wyden (D-OR) to kick-off a campaign for quality in health care reform and to enable Rep. Wyden to take the lead role in supporting and advocating for the Coalition's consumer protection and quality principles.
The Statement of Principles was circulated to consumer organizations in order to gain their endorsement and participation in the Coalition. Over thirty organizations endorsed the Coalition's statement of principles and called for their inclusion in health care reform legislation.
Over the last few years, the Consumer Coalition has emerged as a leading voice on consumer issues and quality assurance and improvement. It has developed model legislation and white papers, drafted legislative language, testified before the key congressional committees and has worked closely with congressional staff to ensure that the critical issues of consumer information, due process protections, consumer advocacy programs and external quality oversight would be included in health care reform legislation.
In September 1993, the Coalition joined the American Medical Peer Review Association in sponsoring a public opinion survey to determine what consumers thought about health care quality issues in the context of health care reform.
Members of the Coalition assisted in the development of the survey instrument and had the opportunity to review the data collected. The results confirmed that the American public, while supportive of health care reform overall, had very real concerns about the quality of care. A press conference was held on September 14th to announce the results of this survey. In addition, the Coalition disseminated the survey results to key congressional staff and other interested organizations in an effort to impress upon them the importance of quality oversight and strong consumer protections in any health care reform legislation.
The Coalition agreed that in order to effectively advocate for its principles of consumer information, due process protections, public accountability and independent external quality oversight, consensus had to be forged on specific policy recommendations. Using the Statement of Principles as a guide, topic areas were defined and working groups formed to further clarify policy positions. The working groups presented outlines or draft papers of their work to the full Coalition for comments and discussion.
As a result of these work groups, two white papers were developed: "Minimum Requirements of Consumer Information" and "White Paper on Due Process Protections." Also developed was an outline for entities - Quality Improvement Foundations - which would be charged with ongoing quality monitoring and improvement. The white papers, outline, and many discussions involved in their development served as a basis for the development of congressional testimony and for analysis of the various health care reform proposals.
The Coalition, represented by its members, testified before key health committees on the issues of consumer information, consumer protection, and quality oversight within the context of the Health Security Act and health care reform in general. Testimony was drafted based on the principles and white papers endorsed by the Coalition's members. The committees include:
The Coalition closely monitored the development of the Administration's health care reform legislation paying particular attention to the issues of consumer information, due process protections, ombudsman or consumer advocacy programs, quality oversight and public accountability. Heather Booth of the Democratic National Committee met with the Coalition and requested our endorsement of the Clinton Plan. However, given the Coalition's diverse membership and focus, it was decided that the Coalition would not endorse any particular plan but rather comment only on the specific issues agreed upon in the Statement of Principles, white papers, and Quality Improvement Foundation outline.
One significant advocacy effort involved the Coalition sending a letter to President Clinton opposing the termination of the Peer Review Organizations under the Medicare program as called for under the Health Security Act. The signing organizations believed that the termination of this program, without another program for ongoing quality monitoring up and running, clearly jeopardized the quality of care for the Medicare population and others.
The Coalition also sent letters to key members in the Senate and House requesting that they focus their attention on the issues of consumer protection and quality. The white papers and Statement of Principles were also distributed on Capitol Hill.
From its inception, the Coalition was able to generate a significant amount of support from members of Congress and their staff, particularly committee staff. It monitored closely the legislative process and the work of the key health committees. Again, the Coalition did not endorse any individual committee's bill in total but rather advocated for the specific provisions within each bill that were most consistent with its principles.
The Coalition also drafted a package of legislative language which was included in testimony given on April 29, 1994. This language was designed to be applicable to any health care reform proposal. Legislative provisions were drafted on the following issues: Consumer Information, Due Process Protections, Consumer Advocate or Ombudsman Programs, Licensing Provisions, Out-of-Network Services, Quality Improvement Foundations and a Health Care Bill of Rights. This legislation was widely distributed on the Hill.
Members of the Coalition worked closely with congressional staff and members of the key health care committees on legislative language and amendments to strengthen the quality and consumer protection provisions contained in each committee's health reform legislation. The following is a summary of the Coalition's legislative successes:
The Coalition joined the American Medical Peer Review Association, the National Association of Health Data Organizations, and the National Business Coalition on Health to sponsor the "Building Blocks of Health Reform: Health Information and Quality Assessment" conference. The conference was held May 12-13, 1994, in Washington, DC. The sponsoring organizations planned the conference to explore the critical challenge of developing a health information database to support improved decision making by all players in the delivery system -- consumers, purchasers, and providers. A diverse group of speakers addressed the conference including Representative Ron Wyden (D-OR); Senator Bob Packwood (R-OR); David B. Nash, M.D., M.B.A., Director of Policy and Clinical Outcomes, Thomas Jefferson University Hospital; Clifton R. Gaus, Administrator of the Agency for Health Care Policy and Research; and Sidney Wolfe, M.D., Director of Public Citizen's Health Research Group. The conference drew a national audience of over two hundred people including: policy makers, consumers, purchasers, and experts in the field of quality assessment and health information. The conference also served to highlight the common interest that each of the sponsoring organizations and the American public has in the development and implementation of mechanisms for health information and quality assessment.
In the past, the Consumer Coalition has met with officials from the Administration on Aging and the Health Care Financing Administration. This work group was established to advise Bruce Vladek, Administrator of the Health Care Financing Administration, on ways to make the long-term care programs within Medicare and Medicaid work better for consumers. The work group requested a meeting with the Coalition in order to receive input from health care consumer organizations. Coalition members were also invited to follow-up with written recommendations. Representatives of the Coalition have made presentations at numerous meetings and conferences of major health, consumer, and aging organizations in order to gain broad support for the Coalition's efforts. The Coalition has participated in meetings and discussions regarding the potential attacks on entitlement programs in 1995. The Coalition's members added the important consumer and quality perspective to these discussions and the plans for legislative action to protect these programs. We also participated in a number of planning sessions with other organizations to coordinate our efforts in the area of consumer protections.
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