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Tag: Data sharing

  • Perspectives on the California Privacy Rights Act: America’s Strictest Data Privacy Law

    Perspectives on the California Privacy Rights Act: America’s Strictest Data Privacy Law

    Background and Key Provisions

    The California Privacy Rights Act (CPRA), also known as Proposition 24, is a recently enacted law aimed at strengthening corporate regulations on data collection and processing in California. It acts as an addendum to the California Consumer Privacy Act (CCPA), a voter-initiated measure designed to enhance oversight of corporate data practices. The CPRA seeks to increase public trust in corporations and improve transparency regarding targeted advertising and cookie usage. Cookies are small files containing user information that websites create and store on users’ devices to tailor their website experience. The CPRA aims to align California’s data privacy practices with the General Data Protection Regulation (GDPR), a European Union data privacy law regarded as the most comprehensive in the world. 

    The CPRA was introduced as a referendum by California voters for the November 2020 general election. It passed with the support of 56.2% of voters in 2020, but did not go into effect until January 1st, 2023. The law builds off of the preexisting CCPA’s protections for user data through the following key provisions:

    • Establishes the California Privacy Protection Agency (CPPA), a government agency responsible for investigating violations, imposing fines, and educating the public on digital privacy rights.
    • Clarifies CCPA definitions of personal data, creating specific categories for financial, biometric, and health data. Adds a new category of sensitive personal information, which will be regulated more heavily than personal information. 
    • Implements privacy protections for minors. Under the CPRA, companies must request permission to buy or sell data from minors, and can be fined for the intentional or unintentional misuse of minors’ data. Minors ages 13 to 16 must explicitly opt into data sharing, while minors ages 16 through 18 can opt out of data sharing. 
    • Expands consumer rights by prohibiting companies from charging fees or refusing services to users who opt out of data sharing. Building on the CCPA’s universal right to opt out of data sharing, the CPRA gives consumers a right to correct or limit the use of the data they share. Consumers can also sue companies that violate the CPRA, even if their personal data was not involved in a security breach. 
    • Modifies the CCPA’s definition of a covered business to exclude most small businesses and include any business that generates significant income from the sale of user data. 

    Perspectives on CPRA Data Collection Regulations

    One of the most contentious aspects of the CPRA is the regulation of personal data collection. Supporters contend that increased regulation will enhance consumer trust by preventing corporations from over-collecting and misusing personal data. Many California voters worry that businesses are gathering and selling personal information without consumers’ knowledge. Whether or not these fears are justified, they have driven strong public support for stricter data processing guidelines under both the CCPA and CPRA. Additionally, supporters of the CPRA argue that its impact on corporate data will be minimal, given that studies suggest less than 1% of Californians take advantage of opt-out options for data sharing.

    Opponents argue that restricting data collection could lead to inaccuracies if a large number of consumers choose to opt out. Without access to a broad dataset, companies may face higher costs to clean and verify the data they collect. Currently, many businesses rely on cookies and tracking technologies to analyze consumer behavior. If these methods become less effective, companies may need to invest in alternative, more expensive market research techniques or expand their workforce to ensure data accuracy.

    The opt-out mechanism has been a focal point of debate. Supporters view it as a balanced compromise, allowing Californians to protect their personal information without significantly disrupting corporate data operations. However, some argue that an opt-in model—requiring companies to obtain explicit consent before collecting data—would provide stronger privacy protections. Critics believe that many consumers simply accept default data collection policies because opting out can be confusing or time-consuming, ultimately limiting the effectiveness of the CPRA’s protections.

    Financial Considerations

    Beyond concerns about data collection, the financial impact of the CPRA has also been widely debated. While the CPRA exempts small businesses from its regulations, larger businesses had already invested heavily in CCPA compliance and were reluctant to incur additional costs to meet new, potentially stricter regulations under the CPRA. Additionally, implementing the CPRA was estimated to cost the State of California approximately $55 billion due to the creation of a new regulatory agency and the need for updated data practices. Critics argued that these funds could have been allocated more effectively, while supporters viewed the investment as essential for ensuring corporate accountability.

    Future Prospects for California’s Privacy Policy

    Since the CPRA is an addendum to the CCPA, California data privacy law remains open to further modifications. Future updates will likely center on three key areas: greater alignment with European Union standards, increased consumer education, and clearer guidelines on business-vendor responsibility.

    The General Data Protection Regulation (GDPR), the European Union’s comprehensive data privacy law, already shares similarities with the CPRA, particularly in restricting data collection and processing. However, a major distinction is that the GDPR applies to all companies operating within its jurisdiction, regardless of revenue. Additionally, the GDPR requires companies to obtain explicit opt-in consent for data collection, while the CPRA relies on an opt-out system. Some supporters of the CPRA believe it does not go far enough, and may consider advocating for GDPR-style opt-in requirements in the future. 

    Others argue that many individuals are unaware of how their data is collected, processed, and sold, no matter how many regulations the state implements. This lack of knowledge can lead to passive compliance rather than informed consent under laws like the CPRA. In the future, advocacy organizations may push for California privacy law to include stronger provisions for community education programs on data collection and privacy options.  

    Another area for potential reform is business-vendor responsibility. Currently, both website operators and third-party vendors are responsible for complying with CPRA regulations, which some argue leads to redundancy and confusion. If accountability is not clearly assigned, businesses may assume that the other party is handling compliance, increasing the risk of regulatory lapses. Clarifying these responsibilities might be a target for legislators or voters who are concerned about streamlining the enforcement of privacy law. 

    Conclusion

    With laws like the CCPA and the CPRA, California maintains the strongest data privacy protections in the nation. Some view these strict regulations as necessary safeguards against the misuse of consumer data that align the state with global privacy norms. Others see laws like CPRA as excessive impositions on business resources. Still, others argue that California law does not go far enough, advocating for a universal opt-in standard rather than an opt-out standard for data sharing. As debates around CPRA continue, California is likely to provide a model for other state and federal data privacy regulations across the U.S.

  • Maternal Mortality Review Committees and the PMDR Reauthorization of 2023: Key Perspectives

    Maternal Mortality Review Committees and the PMDR Reauthorization of 2023: Key Perspectives

    Introduction

    The United States faces a maternal mortality crisis, with maternal death rates significantly higher than other high-income nations. According to the CDC, maternal mortality disproportionately affects Black, Indigenous, and rural communities, with Black women experiencing maternal deaths at 2.6 times the rate of White women. The factors contributing to these disparities are complex and include unequal access to quality healthcare, socioeconomic barriers, and more. Despite advancements in healthcare, 80% of maternal deaths are preventable through timely medical intervention and comprehensive data collection. 

    What are MMRCs?

    State-based Maternal Mortality Review Committees (MMRCs) have been shown to play a pivotal role in analyzing maternal deaths to recommend evidence-based interventions. MMRCs are multidisciplinary teams that examine maternal deaths occurring during pregnancy or within one year postpartum. They utilize comprehensive data sources, including medical records, autopsy reports, and social service information. MMRCs assess preventability and contributing factors, allowing them to identify patterns and propose targeted policy solutions. Their review process centers on critical questions related to medical factors, social determinants, delays in care, and provider bias. By systematically addressing these factors, MMRCs generate insights that inform strategies to reduce preventable maternal deaths, which comprise 20% to 50% of all maternal deaths in the U.S.

    However, MMRCs face inconsistent funding and regulatory barriers, limiting their ability to track and analyze maternal deaths across states. Disparities in data collection methods and access to comprehensive patient records further hinder efforts to address maternal health inequities. Some states lack the authority to access certain medical records, while others experience delays in data sharing, reducing the timeliness and effectiveness of recommendations. Without consistent federal funding, many MMRCs struggle to maintain operations, particularly in rural and underserved areas, where maternal health disparities are often most pronounced. 

    Introduction to the Preventing Maternal Deaths Reauthorization Act

    The Preventing Maternal Deaths Reauthorization Act of 2023 (PMDR) was introduced to the House Committee on Energy and Commerce by Congresswoman Robin Kelly (D-IL) on May 18, 2023. The bill passed out of the Senate Health, Education, Labor, and Pensions (HELP) Committee in Fall 2023 and passed the House with bipartisan support in March 2024. However, the bill failed to pass the Senate before the end of the legislative calendar, rendering the bill “dead”. The reauthorization built upon the original Preventing Maternal Deaths Act of 2018, which helped establish and fund state-based Maternal Mortality Review Committees (MMRCs) to investigate maternal deaths and identify preventable causes. It sought to extend funding for MMRCs, enhance data collection, and address racial disparities in maternal health outcomes through the following provisions:

    1. Extending funding for state-level MMRCs to continue investigating maternal deaths
    2. Authorizing $58 million annually for the CDC to support state-level efforts
    3. Enhancing data collection on factors related to maternal health outcomes, particularly for minority populations
    4. Strengthening community-based interventions to reduce racial and ethnic disparities 
    5. Enhancing coordination among agencies to implement evidence-based solutions
    6. Expanding research on social determinants of maternal health 

    Arguments in Support

    Proponents of the PMDR Act of 2023 argue that the bill provides critical support for tried and true interventions to prevent maternal deaths. They emphasize that scientific literature identifies state-based MMRCs as the “gold standard” for preventing maternal deaths due to their multidisciplinary analysis. However, inconsistent funding threatens the effectiveness of MMRCs, particularly in states with high maternal mortality rates. In a letter to Congress, 125 public health and social services associations urged legislators to treat the PMDR as a top-priority bill, stressing the nation’s consistently high maternal mortality rate. Several national associations, including the American Medical Association, argue that continued federal funding is crucial to preventing maternal deaths. They highlight that past funding gaps resulted in reduced MMRC operations, hospital closures, and increased barriers to care. Supporters contend that the only way to ensure MMRCs can continue their vital work without funding disruptions is to pass the PMDR.

    Proponents of the PMDR Act also highlight its potential to promote health equity. Beyond identifying risk factors, MMRCs are critical in addressing racial, socioeconomic, and geographic disparities in maternal health by filling critical knowledge gaps on the drivers of maternal mortality in underserved populations. The PMDR Act directly supports these efforts by requiring MMRCs to report on disparities in maternal care and propose solutions. Federal support through this bill enables MMRCs to strengthen provider training, expand access to prenatal care, and address structural barriers contributing to maternal deaths. Without reauthorization, proponents argue, efforts to close maternal health gaps would be fragmented, leaving vulnerable populations without necessary protections.

    Arguments in Opposition

    The most prominent critique of the PMDR Act is that it focuses too heavily on MMRCs. Critics voiced concerns about MMRCs’ inconsistency, lack of accountability, and failure to acknowledge all social determinants of health. 

    Opponents highlight that legal and logistical challenges, such as data collection issues and lack of legal protections for participants, can create disparities in MMRC operations. Rural populations, who face higher maternal mortality rates and limited access to care, are often overlooked in MMRCs, further exacerbating disparities. Additionally, bureaucratic barriers and state laws limiting community involvement in MMRCs reduce their effectiveness in addressing maternal health challenges. 

    Others argue that MMRCs lack accountability, particularly regarding inclusivity and equitable decision-making. Advocates contend that MMRCs often exclude community representatives or organizations that challenge the status quo, prioritizing clinical expertise over individuals with lived experience. This exclusion can foster distrust, as community members may feel their knowledge and perspective are undervalued. The lack of compensation for community members to attend all-day MMRC meetings – unlike salaried clinicians – adds another barrier, further entrenching inequalities. Laws that impose burdensome requirements on MMRCs further complicate the process and reduce diversity in ideas. Opponents of the PMDR contend that these factors contribute to a lack of accountability from MMRCs, preventing them from fully creating lasting and inclusive solutions. 

    Finally, critics assert that MMRCs often fail to adequately address the underlying social determinants of health that contribute to maternal mortality. While MMRCs focus on clinical factors, such as healthcare quality and implicit bias, they can lack the frameworks to assess other social determinants like housing instability, food insecurity, or socioeconomic status. Often, these factors are deeply rooted in the broader healthcare system and community environments. Critics argue that the absence of these social factors in MMRC reviews limits the committees’ ability to develop holistic prevention solutions. Reports suggest MMRCs could benefit from incorporating a health equity framework and utilizing socio-spatial measures to address the full spectrum of challenges mothers face. Without this consideration, critics argue that MMRCs fall short of offering effective solutions to reduce maternal deaths and disparities. 

    Due to these critiques of MMRCs, critics of the PMDR argue that the bill should allocate more funding toward alternate interventions 

    Conclusion 

    The Preventing Maternal Deaths Reauthorization Act of 2023 represented an effort to extend investment in evidence-based maternal health interventions. While it received strong bipartisan support in the House, it died before a vote in the Senate, leaving MMRC funding uncertain in the years to come. While the bill was applauded for its potential to expand access to maternal care and fill critical knowledge gaps on maternal mortality factors, critics argued it placed too much emphasis on an intervention that lacked consistency and accountability to marginalized communities. 

    Future Outlook

    The Trump administration has implemented significant changes to the National Institutes of Health (NIH), including halting medical research funding and restructuring the agency, which has led to delays and uncertainties in grant approvals. These actions have raised concerns about the future of critical medical research, including studies on maternal health. Given these developments, the future of the PMDR may depend on an evolving public health funding environment. Advocacy groups and policymakers will need to collaborate to ensure that maternal health research and interventions receive the necessary support, despite the current challenges in the federal funding landscape.