Listening to consumers means sharing power, a scary proposition that may save you money
It’s been a long time coming, but public purchasers of health care services for low-income people are involving them in the operation of health plans.
Change comes none too soon for RoAnne Chaney, program officer leader of the Consumer Action agenda for Lawrenceville, NJ-based Center for Health Care Strategies (CHCS), which promotes the ability of consumers to navigate health care delivery systems, access needed services, and participate in the design, implementation, and monitoring of publicly financed managed care.
"Consumers possess a lot of information that has been untapped," Ms. Chaney tells State Health Watch. "They often don’t recognize that they even have important information. There is value in getting information that will improve health care."
A CHCS issue brief says that even with positive outcomes from consumer involvement, health care systems and public purchasers of care have been slow to incorporate consumer involvement in service design and monitoring.
To help convince states, health plans, and providers to make more of an effort to involve consumers, they are being asked to show how consumer input can help save money, improve outcomes and quality of life, and reduce hospitalizations.
Ms. Chaney cites several examples of ways in which consumer involvement has helped save money and improve health outcomes. In Michigan, for example, The Wellness Plan has worked to better identify immunized children and decrease the administrative costs associated with collection of Health Plan Employer Data and Information Set (HEDIS) immunization statistics. The plan implemented a cross-referencing system intended to increase the number of complete immunization records captured by its administrative data and increase the immunization rate for 2-year-olds from 43% in 2000 to 80% in 2004.
Through better data collection and outreach to parents and providers of children missing immunizations, The Wellness Plan increased the number of 2-year-olds with complete immunization records captured by its administrative data from .44% to 17% and boosted HEDIS immunization rates from 43% to 52% from 2000 to 2001.
In Rhode Island, the state worked with consumers, health plans, and other organizations to design a health indicator system to evaluate health outcomes for RIteCare managed care beneficiaries. One result has been that 80% of all children in RIteCare are screened annually for lead poisoning, markedly higher than the 20% of children on Medicaid nationally. And since many of those screened have lead poisoning, the state has implemented an environmental abatement program.
In Portland, OR, Outside IN is a consumer organization that is focusing on the state’s increasing numbers of homeless youth. It wants to raise the number of homeless youth who appropriately access health care and involve them in restructuring the Oregon Health Plan. In the group’s first two months, it brought 107 homeless youths to see physicians.
Use of consumers to help re-do enrollment materials in Massachusetts is credited with increasing the percentage of enrollees who chose a health plan on their own from 30% to 70%. Other research has shown that people who are actively involved in the health care system are more likely to take steps to maintain their health, saving money overall.
CHCS says consumers and their advocacy organizations have resisted the transition to Medicaid managed care, thinking the flawed fee-for-service system that they understand is better than a new system that they don’t.
"The fear and distrust arising when there is limited contact between consumer representatives and state and health plan officials exacerbates" the tension between consumers and managed care, the issue brief says, and that tension "undermines efforts by states or health plans to engage consumers and limits the opportunities for consumers and consumer groups to help improve managed care programs."
Officials don’t understand
State agency and health plan officials often may not understand what it’s like for a family where parents and children have different health care providers and managed care programs.
"States and health plans need to understand the complexity of this experience," CHCS says, "and they need consumer input on what health care access and delivery system problems exist and how to fix them. Families need education on preventive care and tools for navigating managed care and gaining access to services. While many states and health plans have some type of educational materials for beneficiaries, states generally have not asked consumers what information they need before the materials are developed."
CHCS has provided seed grants of up to $25,000 each to 18 consumer organizations to support development of innovative projects to strengthen consumer and family involvement in publicly financed managed care.
One grant went to Rhode Island’s RIteCare program, which has had great success with consumer advisory boards, according to Rhode Island Center for Child and Family Health director Tricia Leddy, who runs the RIteCare program in the state’s Department of Human Services.
Ms. Leddy tells State Health Watch that RIteCare has used a consumer advisory committee with the Medicaid program since its inception in 1993. The committee meets monthly. "We get very good attendance, mostly advocates and consumers with just a few providers. It has been a fabulous opportunity for consumers to bring up issues to people who can take the ball and run with it."
State officials must want input
She says the key to success is for attending state agency officials to have the ability and accountability to make change.
"Relevant issues are raised at these meetings," Ms. Leddy says. "There is training provided before the sessions to help consumers learn how to be effective advocates."
The consumer group assisted the state in developing a member-satisfaction survey, making sure that questions on the survey cover items of importance to consumers, such as transportation issues and language interpreter services.
"They have been very vocal not just about service delivery issues but also about eligibility issues," she says. "They insisted that we shorten the application form and make it a mail-in process. They do a great job in reviewing written materials to be distributed by the state or health plans to be sure they can be understood."
Ms. Leddy says consumers prepared the guidelines for the state agency and health plans in developing handout materials. The result is "drafts that already are pretty good." It has reached the point, she says, that staff wouldn’t think about sending out a member-services packet without first obtaining consumer review and input.
Consumers raise other issues
The consumer advisory group also has raised issues — such as access to telephone service — that probably would not have been thought of by state officials, according to Ms. Leddy.
"People can lose their phone service because they don’t pay the bill," she says, "but if they have to use the phone to get prior approval or do other things for their health care, it can be a problem. The state and health plans teamed up with advocates to approach the phone company and get a change in the policy on access to the lifeline telephone service."
Another issue resolved with the advisory group’s involved distribution of bus passes to beneficiaries. Under a welfare-like system, recipients had to report to a local office monthly and stand in line for a bus pass. After advocates questioned the process, the state streamlined the system so that RIteCare beneficiaries can obtain passes at any supermarket selling them to the general public.
"They showed us how we can provide a benefit to people with dignity and respect," Ms. Leddy says.
Plans also make changes
Health plans also are acting on issues raised by the consumers. Leddy says that when a consumer-satisfaction survey found a problem with language translation services and that provider staffs were confused about protocols for requesting services, the plans jointly developed a uniform request form. "There was a round of applause when that development was reported at the next meeting," she says.
Now the process is being used to find ways in which to better provide services to children with special needs. Advisory committees are identifying needs in the delivery system and ways in which these children can be brought into RIteCare.
Another group working with a consumer advocacy grant is AXIS Healthcare, which helps those with physical disabilities find the care they need when they need it, according to executive director Chris Duff.
"In the traditional world, we would be called a care management organization," he tells State Health Watch. "But our clients are clear that they don’t want to be managed. Rather than becoming a health plan, we want to partner with providers to help them deliver services to this particular population."
AXIS Healthcare’s partner in this venture is UCare Minnesota.
The plan has delegated all utilization review and most provider relations activities to AXIS for its clients. As they put together a pilot model, they started a consumer working group that now has been meeting for more than three years. They also have used consumer forums and focus groups to listen to what disabled people say they need in health care access and delivery.
"Our clients really believe that our approach is different," Mr. Duff says. "They believe that we care what they say. They talk about our program’ rather than that program.’ We no longer will speak in any public setting without having a consumer participating with us. It’s pretty arrogant for us to say what they need.
Listening is the key
"Health care is one of the last areas in which the customer is truly not listened to. Retail has it down, and banking is getting it. To truly listen, you have to be willing to share power, and that’s a scary concept for health plans and regulators."
Mr. Duff says AXIS hasn’t found a downside. He says members have challenged the company on meeting times and about providing information in alternative formats. "They’ve told us when we’re missing something," he says. "We don’t always change, but we sometimes make modifications."
Mr. Duff says the AXIS clients can accept that not all its staff members are disabled. "Hire people to get the work done, is what they tell us, but don’t pretend to speak for us."
AXIS now has 100 members, with a goal of getting to 300 to 500. "We’re now in the process of tweaking our stages of growth," he says. They also are evaluating the program in hopes that other states will be able to apply the lessons they’ve learned to improve coordination of care for the physically disabled.
[Contact Ms. Chaney at (609) 895-8101, Ms. Leddy at (401) 462-1300, and Mr. Duff at (651) 556-0863.]
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