Philadelphia’s Medicaid HMOs share data to tackle city’s poor pregnancy outcomes
Philadelphia’s Medicaid HMOs share data to tackle city’s poor pregnancy outcomes
Data warehouse worries privacy advocates
In an innovative, community-based approach to improving Medicaid birth outcomes, three HMOs serving virtually all pregnant Medicaid enrollees in the Philadelphia area are pooling their patients’ clinical information to design targeted health promotions and interventions.
With Philadelphia’s low-birthweight rate more than double the Healthy People 2000 goal, area health officials long have recognized the need to better identify and manage at-risk pregnant women. Officials constructing a clinical data warehouse already report their "first big wow," the capture of uniform clinical data on an astounding 13,000 women in southeastern Pennsylvania, 90% of prenatal clients in the area’s mandatory Medicaid rollout.
The first reports to come from the system will likely be prevalence statistics on various risk behaviors, followed by risk-adjusted outcome reports.
"The big question is whether there is anything anyone can do once a woman is pregnant that has an effect on the outcome, and the jury is still out on that," says Richard Baron, MD, president and CEO of Healthier Babies, Inc., the new non-profit corporation formed to operate the data warehouse. Because medical intervention in a pregnancy "doesn’t seem to make much difference" in birth outcomes in large populations, Baron expects Healthier Babies will look first at nonmedical interventions such as smoking cessation programs in conjunction with local health departments.
The electronic database is linked to the state Department of Health’s birth certificate database, making it possible to track a patient’s status from presentation through prenatal care to delivery. Managed care organizations in HealthChoices, Pennsylvania’s Medicaid managed care program, soon will be able to use the system for reports required by the state Department of Public Welfare.
But the project’s population-based approach has faced enormous obstacles in coordinating providers and addressing concerns about the confidentiality of data.
"We’re concerned about the creation of any database that includes information on psychosocial issues such as this that could be used to take punitive action against pregnant women," says Carol Tracy, executive director of the Women’s Law Project in Philadelphia. "Despite romantic notions to the contrary, public policy is usually punitive against pregnant women. They are held to a much higher standard, especially if they engage in behaviors that people don’t approve of."
When HealthChoices came to the five-county Philadelphia area, it was clear that success would depend in large part on the ability of the four participating managed care organizations to identify and manage at-risk pregnant women. Because all Medicaid pregnant women can be considered at some risk because of many medical and social factors, it was necessary to channel resources toward those who were at very high risk. The problem was how to identify those people.
"You can’t identify them from claims data," says Mr. Baron. "You need clinical information."
Mr. Baron, former chief medical officer of Health Partners, the only nonprofit HMO serving the Medicaid market in Philadelphia, enlisted the help of the Medicaid plans to get clinical data from providers seeing Medicaid enrollees. The form was kept simple, and plans made completion a requirement of their physicians.
He says the second "wow" is that the database works "the way it is supposed to." With three mouse clicks, a provider can identify all the women using cocaine in a particular MCO, get the individual history on each one, and read the text from each woman’s last visit to the doctor. The participating MCOs are on-line with the system and can customize reports.
Mr. Baron says some lawyers have raised the possibility that the uses proposed for the Healthier Babies data violate federal protections for drug and alcohol statistics and the state’s confidentiality laws pertaining to HIV. The Women’s Law Project has opposed the program, citing a South Carolina incident in which two pregnant women were charged with child abuse and jailed, one for five years and one for eight years, for substance abuse during pregnancy. Both women delivered healthy babies.
Ms. Tracy says she is concerned that even though individual identifiers are to be kept confidential by the HMOs, there could be aggregate data on elective abortions, history of substance abuse, and history of childhood sexual abuse that could work against all women. She says while she recognizes the importance of such information in developing health programs, she is uneasy because the women who are interviewed don’t know how the information in the database will be used.
"The project is well-motivated," says Ms. Tracy, "I just wish they had done the data collection on white men first."
Ms. Tracy says she believes the value the HMOs see in this effort is that they might be able to convince state officials that because of the significant psychosocial problems in this population, additional funds are needed through the HealthChoices program. "I understand the significance of that and also the fact that many people think it is phenomenal that the HMOs are working together. But balanced against that is the potential use of information that could be harmful to an individual woman or harmful to everyone in the aggregate."
While Ms. Tracy concedes it may be possible to address some of her group’s questions dealing with individual identifiers, she says her group still is concerned that the aggregate data "may be used not to increase social service programs but to tighten drug abuse laws and take children away from their mothers."
Mr. Baron says Healthier Babies is merely facilitating access to already available information. He notes Healthier Babies has developed a corporate structure geared to deal with confidentiality concerns of all the constituencies, from advocates for women to the managed care organizations who feared public scrutiny of their efforts. "We realized one way to address this was to have a governance structure that involves all the constituencies, and make a policy on disclosure one of the primary board responsibilities."
Even though Health Resources Management (formerly Oxford Health Plan) encountered financial problems and couldn’t afford to continue with the program, Health ier Babies has continued with Health Management Alternatives, Health Partners, and Keystone Mercy Health Plan, which together cover nearly 90% of the Medicaid population in the region. In addition, Healthier Babies and Philadelphia officials are discussing expanding the program to uninsured women served by city clinics, most of whom eventually are enrolled in Medicaid.
Even without every plan, substantial physician overlap among HMOs means most of the city’s Medicaid providers participate in Healthier Babies. Collectively, they contribute about 1,700 encounter forms a week.
"We think the data have some face validity," says Mr. Baron. "For instance, we’re showing tobacco use in the low 20%, and that’s near what generally has been reported."
One of the mistakes Healthier Babies made in establishing the project, Mr. Baron says, was underestimating the amount of effort needed to create the provider database. Internally, the database had to deal with multiple entries and other problems. Externally, the bankruptcy of the Allegheny Health System made it difficult to trace physicians as they switched from hospital-owned practices back to private practice.
The Robert Wood Johnson Foun da tion provided the project’s first-year planning funds of $138,000. A later grant for $332,000 from the Center for Health Care Strategies, a foundation national program office, supported creation of the database and evolution of the effort to its own nonprofit corporation. Healthier Babies’ $600,000 annual operating budget is supported through user fees paid by the HealthChoices HMOs, following a formula based on market share for each plan. Report sales also generate income for the project.
Contact Mr. Baron at (215) 985-2517 and Ms. Tracy at (215) 928-9801.
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