Affordable Care Act: The data collection is essential

Laura Redman | 1/29/2016, 1:31 p.m.
The last two years of open enrollment for expanded health insurance coverage through the Affordable Care Act have resulted in ...
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The last two years of open enrollment for expanded health insurance coverage through the Affordable Care Act have resulted in over 2 million New Yorkers receiving health insurance through the New York State of Health Marketplace. An essential part of the ACA is the emphasis on data collection. In our current world, data matters. Data can show who is being reached for enrollment coverage and who is not; how health insurance coverage positively impacts communities; and how certain illnesses and diseases impact specific communities more than others. It also can help inform strategies to address health disparities impacting vulnerable communities. That’s why it is vital that all applicants provide demographic information in their applications.

The NYSOH application currently asks for race, ethnicity and preferred language. Advocates are working towards the inclusion of sexual orientation and gender identity data as well. Each piece of data on individual applicants is important for documenting and improving the quality of care for identified groups of people, particularly those most vulnerable.

Despite the usefulness of collecting data, not enough applicants are answering important demographic questions when they sign up for insurance. According to NYSOH, 31 percent of the 2014-15 open enrollment period applicants did not answer the demographic questions embedded in the enrollment application, which is up 6 percent from the previous year. Of those who did respond, only 25 percent of applicants identified as Latino, 16 percent identified as Black/African-American and 13 percent identified as Asian/Pacific Islander—which is inaccurate and incomplete.

Why are applicants not answering these vital questions? Unfortunately, there are misconceptions about how the data will be used. Many applicants fear that their answers may have a direct impact on their application, resulting in their application being denied if they answer incorrectly. Some fear possible discrimination. Others fear that the data will be made public or given to unrelated agencies.

Many of these concerns are unwarranted. Demographic information such as race, sex and preferred language does not determine eligibility. Additionally, discrimination is illegal and NYSOH cannot deny anyone access to health insurance based on this information. Finally, NYSOH can only share data with the appropriate health insurance provider that the applicant qualifies or signs up for, not with unrelated outside agencies.

However, if applicants still have concerns about safely answering these questions, they can work with the Navigator and Certified Application Counselor systems that have assisters who can speak to applicants in their preferred language and are culturally competent, trained in the importance of answering demographic questions and able to respectfully address applicants’ potential fears.

Answering these demographic questions is good for both the applicants’ health and those of their neighbors and the New York community. It also can help keep our health care systems accountable and responsive to community needs. For example, 11 percent of New Yorkers remain uninsured, with even higher percentages among the African-American and Latino populations. Additionally, many may be eligible for insurance or programs available through the Marketplace, yet are unaware. The demographics data obtained from applications can bring issues like these to light and help advocates and the New York State of Health Marketplace develop better strategies to encourage the remaining uninsured to sign up for insurance. But without this vital feedback from individual applicants and without Navigators and application assisters clarifying the safety and importance of answering these questions, it will be more challenging for the state, insurers and health care providers to provide the high quality care that all New Yorkers deserve.

Laura Redman is the director of the Health Justice Program at New York Lawyers for the Public Interest. NYLPI’s Health Justice Program works to bring a racial justice and immigrant rights focus to health care advocacy in New York City and state.