HEALTH RIGHTS HOTLINE Independent Assistance For Health Care Consumers

Sacramento, California -- A pilot hotline in Sacramento, California is responding to consumers' need to navigate the health care system and is having a positive impact in resolving their problems, according to an evaluation of the first ever independent hotline for managed care consumers. The results of the evaluation were released today in an article published in the journal Health Affairs. The article -- "The Health Rights Hotline: Role of a Model Independent-Assistance Program," by Gina A. Livermore and David C. Stapleton from The Lewin Group, Peter V. Lee from the Center for Health Care Rights, and Larry Levitt from the Kaiser Family Foundation -- is based on an evaluation of the Health Rights Hotline conducted by The Lewin Group, a Virginia-based health policy consulting firm. Both the Hotline and its evaluation were funded by three private health care foundations: The California Wellness Foundation, the Kaiser Family Foundation, and Sierra Health Foundation. The evaluation is based on surveys of Sacramento-area residents and Hotline callers, data collected by the Hotline, consumer focus groups, and interviews with health care stakeholders such as health plans, medical groups, purchasers, and consumer organizations.

Need for a Consumer Hotline

Ombuds services like the Health Rights Hotline help consumers successfully navigate the health care system and resolve problems with their health plans, the evaluation concluded. A survey of 3,200 Sacramento-area households, conducted as part of the evaluation, found that 29% of households reported a problem with their health care in the previous 12 months. The most common type of problem reported by consumers was a delay or denial of care (cited by 42% of those with problems). Many consumers reported serious problems: 39% of those who reported a problem said they experienced a financial loss of at least $200; a time loss of at least 10 hours from work, school or other productive activity; or physical harm or the worsening/prolonging of a health condition.

"There appears to be a real need for independent assistance programs like the Health Rights Hotline to educate consumers about their rights and effective means for resolving problems they experience with the health care system," said Gina Livermore, Ph.D., senior manager of The Lewin Group and a principal author of the evaluation.

The survey also found that while 71% of consumers reporting a problem took some action to resolve it, the majority (54%) were either dissatisfied with the resolution or had not yet resolved the problem at the time of the survey. More than two-thirds (68%) of consumers reporting problems said they wanted a mechanism for lodging complaints; 64% wanted more information about consumers' rights; and 55% wanted a referral to a group that could help them.

"The Congressional debate over patients' rights begs the question of how to make sure consumers know about those rights and can exercise them," said Drew Altman, Ph.D., president of the Kaiser Family Foundation. "The Health Rights Hotline is a real-life example of how to help consumers resolve problems in the least confrontational way."

Evaluation of the Hotline's Activities

The Hotline's direct response to the needs identified in the survey has been to provide callers with counseling on how to effectively navigate the health care system, information on how to be a better self-advocate, referrals to additional resources, and aid when intervening with a health plan or provider.

Hotline counselors responded to more than 4,300 callers during the first 18 months of operation. According to the evaluation, two-thirds of callers (65%) had not contacted their health plan for assistance prior to calling the Hotline, most commonly because they did not know what to do. Of those who did contact their health plan before calling the Hotline, 33% said the plan was not helpful and 30% disagreed with the plan's action.

"Clearly the extent to which the Hotline is being used demonstrates the need for this type of service," said Gary Yates, president and CEO of The California Wellness Foundation. "If consumers are to obtain quality health care, they must understand how to negotiate and successfully advocate for their own health needs."

Through follow-up surveys with Hotline callers, the evaluation found that consumers who contacted the Hotline were significantly more likely to be satisfied with the resolutions of their problems (54%) than the baseline group of Sacramento consumers who were surveyed prior to the inception of the Hotline (32%). Sixty-two percent (62%) of Hotline callers rated the services as "very helpful" and 23% said they were "somewhat helpful." Of those callers whose problems were resolved, almost half (46%) cited contacting the Health Rights Hotline as the "most important action" they took to resolve their problem.

"Sierra Health Foundation is extremely pleased to see that the Hotline is being used, and is proving to be an effective aid for consumers," said Len McCandliss, president, Sierra Health Foundation. "The success of the Health Rights Hotline ultimately means improved health for the people in the Sacramento region, and that is the most important outcome we could hope for."

Outreach to Consumers Remains a Challenge

The evaluation cited outreach to consumers to make them aware of the Hotline as one of its principal challenges. It found that virtually all health plans and most physician groups declined to promote the Hotline. Primary reasons cited by these organizations were that they wanted their patients to use internal customer services resources first, and that they were concerned that publicizing the Hotline would have an adverse impact on their own "problem rates" (which the Hotline staff calculates and publicizes). The evaluation suggests that outreach to consumers about the availability of the Hotline through health plans and providers would be highly effective, but might not be possible without a government mandate.

The Hotline cost about $1 million a year to operate. Direct services to clients averaged $124 per case, but varied greatly depending on how much time a counselor spent with an individual consumer. The large number of cases (40%) on which counselors spent less than 30 minutes each cost an average of $14, while the small number of cases (5%) that took counselors more than five hours to resolve cost an average of $1,028 each.

"The evaluation of the Health Rights Hotline provides two key lessons," said Peter Lee, executive director of the Center for Health Care Rights. "First, additional consumer protections must go hand-in-hand with educating consumers and helping them exercise those rights. And second, the experiences of consumers with problems can be used to help improve the health care system to prevent problems in the future."

Additional information, including reprints of the Health Affairs article, January/February, 2000 can be found on the Kaiser Family Foundation's web site at www.kff.org or by calling the Foundation's Publications Request Line at 1-800-656-4533 (ask for document #1569).

The Health Rights Hotline is an independent, privately funded program that provides free information and assistance to health care consumers in Sacramento, Placer, Yolo, and El Dorado counties in California. The Hotline is a project of the Center for Health Care Rights, an advocacy organization in Los Angeles, California, and the Sacramento-based Legal Services of Northern California. The Hotline is funded by the Kaiser Family Foundation, The California Wellness Foundation, and Sierra Health Foundation. The Hotline began as a pilot program in June, 1997 to test one approach to helping patients navigate through the health care system while assessing the patchwork of resources available to patients. Using the ombudsman program model, the Hotline:

• helps health care consumers in the Sacramento area obtain needed care by helping them understand their health care options and by educating and assisting them to be responsible, informed, and empowered consumers;
• improves the health care delivery system in the Sacramento area and beyond by collecting and analyzing information on consumers? problems, proposing effective solutions, and providing systemic feedback to health plans, purchasers, regulators, and the public; and
• serves as a consumer-oriented model for independent assistance programs in California and the nation.

The Hotline is completely independent of all health plans, providers, purchasers, and government regulators and assists all consumers regardless of health plan affiliation or source of payment.

The Health Rights Hotline is open from 9:00 a.m. to 5:00 p.m. Monday through Friday PST and can be reached toll-free by consumers in the four-county service area by calling 1-888-354-4474 or (916) 551-2100.

The Kaiser Family Foundation, based in Menlo Park, California, is a non-profit, independent national health care philanthropy and is not associated with Kaiser Permanente or Kaiser Industries.

The California Wellness Foundation, based in Woodland Hills, California, is an independent, private foundation whose mission is to improve the health of the people of California by making grants for health promotion, wellness education and disease prevention.

Sierra Health Foundation, headquartered in Sacramento, California, is a non-profit, independent foundation that supports health and health-related activities in 26 northern California counties.

###