CMS Used Consumers’ Personal Data to Streamline, Improve

CMS has undertaken a review of the privacy policies, contracts for third-party tools, and URL construction after it became publicized that sent consumers’ personal data to private companies. In a press release, a CMS official said used consumers’ information to streamline and improve the consumer experience—to gain data regarding “when consumers are having difficulty, or understand when website traffic is building during busy periods.” The official also said it used the information to educate the uninsured about the importance of health coverage, the role of the Health Insurance Marketplace, and available financial assistance through targeted digital media and advertising.

Personal Information Sent to Contractors

Reportedly, the types of information sent to third-party contractors may include age, income, ZIP code, smoker status, and whether a consumer is pregnant. Contractors may have also received information such as computers’ internet addresses, which can make it possible to identify a person’s name or address. The Obama Administration has said that the contractors are barred from using the consumers’ information for their own business interests, though it has not specified how it ensures the companies are following such rules.

Improving Protection of Privacy

In the release, Director and Marketplace Chief Executive Officer Kevin Counihan stated that the agency is determining whether additional steps are needed to improve the protection of consumers’ privacy but that many tools available on do not require consumers to provide their names or fill out an application to receive information. URLs of pages requiring the provision of sensitive information are encrypted so that third parties are not able to view the data entered by the consumer.

“While we have taken steps to improve, we know building and maintaining a website is an evolving process,” Counihan said. “[T]hat’s why we will continue this review and take any concerns raised about privacy seriously and will work to address them head on.”

Star Search: CMS Imposes Ratings on Dialysis Compare Site

The Dialysis Facility Compare (DFC) website will now include a star-rating system, which will allow users to further compare facilities on the CMS-run website, according to an announcement made by CMS. The one-to-five star system will indicate “excellence in health care quality” and summarize performance data, said CMS on the press release. This is the third CMS website to adopt the star rating system; Nursing Home Compare and Physician Compare already have the star-ratings in place.

Rating System

The DFC website allows beneficiaries to directly compare facilities providing dialysis services. With the imposition of the five-star rating system, the comparison will be enhanced as the stars, which will range from one to five, will indicate quality of care and services. Specifically, nine different quality measures will be used to determine the star ratings, yet CMS has noted its intention to add additional measures in the future. CMS explained the reasoning behind the adoption of the rating system noting several factors including that the system would: (1) help consumers of dialysis services make more informed health care decisions; (2) release transparent and easily understandable data in an effort to increase public reporting as part of the implementation of the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148); (3) respond to the call for more quality measure improvement data; and (4) provide patient and consumer driven content pursuant to the efforts described in the Administration’s Digital Government Strategy.  

CMS Administrator Marilyn Tavenner described the rating system this way: “Star ratings are simple to understand and are an excellent resource for patients, their families, and caregivers to use when talking to doctors about health care choices.”


Perhaps because such websites that allow comparison of providers’ services have been criticized in the past, this rating system is not only being adopted, but CMS also announced an update to data supporting individual DFC quality measures (see CMS’ compare websites need to be more beneficiary friendly, November 19, 2014). In conjunction with the announcement to impose the star-rating system, CMS also announced its intention to “add the Standardized Readmission Ratio (SRR) for dialysis facilities to the publicly reported quality outcome measures available on the Compare website.”

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The Right to Die: When the Right to Choose Means Something New

The decision of the Connecticut Supreme Court to deny a 17-year-old minor’s attempt to be considered a “mature minor” and thereby refuse lifesaving cancer treatment has brought the right to die back into the headlines in a novel way.  The decision of the Connecticut high court to force a 17-year-old girl to accept medical treatment that she and her mother both attempted to reject calls into question the scope of the right to self-determination and begs questions about what autonomy means.

Diagnosis and Conflict

According to the New York Times coverage of the story, after Cassandra C. was diagnosed with Hodgkin’s lymphoma, a highly treatable form of cancer, Cassandra and her mother, Jackie Fortin, began a protracted battle with the state. After Fortin failed to take Cassandra to some of her doctor’s appointments—during a period of time where she was allegedly looking for a second opinion and alternatives to chemotherapy—the Connecticut Department of Children and Families (DCF) took custody of Cassandra. Two weeks after she was taken into DCF custody, she was allowed to return home on the condition that she underwent chemotherapy. Cassandra underwent two days of treatment and ran away from home.  When she returned—out of fear that her absence would lead to her mother’s incarceration—Cassandra was put back in the custody of DCF, hospitalized, and forced to undergo additional chemotherapy.

Mature Minor Question

Because the state overruled the agreed decision of mother and daughter to reject chemotherapy, Cassandra petitioned the court to consider her a “mature minor” so that she could reject the treatment as an 18-year-old would have been able to do. The court determined that, despite being months shy of her 18th birthday, Cassandra was not competent to make her own medical decisions.  Thus, as discussed in an Economist article, despite being old enough to donate blood, acquire birth control, seek psychiatric treatment, or terminate a pregnancy in the state of Connecticut, Cassandra was forced to accept a medical treatment she did not want. In Cassandra’s particular case, the story is complicated by the DCF decision to take Cassandra into DCF custody and strip Fortin of her rights to make medical decisions on her child’s behalf. Additionally, CNN reported that the court was reluctant to invoke the mature minor doctrine because no psychological evaluation had been conducted to determine the degree of Cassandra’s maturity or competency.

“My Life”

According to a report in the Washington Times, Cassandra wrote in an opinion piece about her story: “How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.” She also said “this is my life and my body, not the DCF’s and not the state’s. I am a human—I should be able to decide.”  Cassandra’s decision to refuse treatment that doctors indicated has an 85 percent success rate is controversial, to say the least. However, for Cassandra—who stands at the threshold between being able to conduct her medical affairs as an adult and being held at the whim of a state agency—the story represents a complex question about liberty. Although chemotherapy is accepted by the majority of those involved as the medically correct choice, are there other choices that deserve to be honored? At what point is a medical choice (irresponsible or otherwise) a personal one?


Medicaid Expansion Report: Snapshot of Progress, One Year Later

One year after the implementation of the “key Medicaid provisions” of the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148), the Kaiser Family Foundation (KFF) found that the expansion of Medicaid has contributed to a broadening basis of coverage for the low-income population and has “accelerat[ed] state efforts to move from antiquated, paper-driven enrollment processes to a new modernized enrollment experience.” In its 13th annual 50-state survey of Medicaid and Children’s Health Insurance Program (CHIP) eligibility, KFF highlights the data supporting these findings and emphasizes the status of coverage and enrollment experience for those in states that have chosen to expand Medicaid under the ACA and those in states that have rejected the expansion.

Expansion and Enrollment Numbers

As of the end of 2014, KFF reports, 28 states—including New Hampshire and Pennsylvania, both of which made the decision to expand Medicaid in 2014—had expanded Medicaid coverage to individuals with incomes of up to 138 percent of the federal poverty level (FPL). This led to an increase of median income eligibility levels in those states compared with the time before the implementation of the ACA, particularly among childless adults who were, for the most part, previously excluded from Medicaid coverage. On the other hand, in the 23 states that have chosen not to add a broadened base of Medicaid eligibility under the ACA, KFF states that levels of eligibility are very limited and “in all but one of these states (Wisconsin), childless adults remain ineligible for Medicaid regardless of their incomes.”

The KFF reports also notes, however, that Medicaid and CHIP coverage for pregnant women and children “remains strong,” as “all but two states cover children at or above 200 percent of the FPL through Medicaid and CHIP with 19 states covering children at or above 300 percent of the FPL.” Meanwhile 33 states provide coverage eligibility to pregnant women who have incomes at or above 200 percent of the FPL.

Streamlined Processes

The report also revealed positive trends in regard to the streamlining and increased ease of enrollment as states are expanding Medicaid coverage under the guise of health care reform. Specifically, KFF found that, in all but one state, individuals are able to apply for Medicaid benefits at the state level online and “the majority of states are accepting Medicaid applications by phone.” In Tennessee, the only state where online enrollment applications are not available, individuals are instead directed to the federally-facilitated Marketplace (FFM) to enroll. Additionally, 36 states provide enrolled individuals an opportunity to set up an online account to aid in the management of their Medicaid coverage and 40 states have put processes into place that use electronic data sources to verify income prior to enrollment.

The KFF report also identified several new processes that have been created in states in an attempt to make further improvements in the enrollment process including the implementation of: (1) presumptive eligibility determinations for children and pregnant women; and (2) the Express Lane Eligibility (ELE) program, which uses other “means-tested programs such as the Supplemental Nutrition Assistance Program (SNAP)” to identify cases of eligibility for Medicaid and CHIP. Finally, the report found that 12 states operate a single, integrated system that makes eligibility determinations under the state’s Medicaid guidelines and Marketplace coverage options. The failure to implement this type of coordination in other states, KFF notes, contributed to delays in Medicaid eligibility determinations in 2014.

What’s Next

In more than one place in its discussion, KFF highlights the fact that there is no deadline for states to expand Medicaid under the ACA, as well as the fact that, in some states, the debate over Medicaid expansion will continue into 2015. On another note, the report’s authors caution that without Congressional action, CHIP funding is set to expire in September 2015. If this funding is withdrawn at that time, KFF warns that this will have budgetary implications on the state level.