Taking Patient Privacy and Autonomy More Seriously: Why an Orwellian Account Is Not Sufficient

Weber, Karsten; Bittner, Uta; Manzeschke, Arne; Rother, Elisabeth; Quack, Friedericke; Dengler, Kathrin; Fangerau, Heiner

doi:10.1080/15265161.2012.699147

Cited by 5 publications

(1 citation statement)

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“…Gerontologists have also pointed toward the parallels between monitoring and “processes of institutionalization,” whereby deviations from one’s typical behavior or routine lead to the involvement of caregivers [ 29 ]. Weber and colleagues warn that individuals will “lack full autonomy in their decision making” when they “normalize” their behaviors while being monitored, thus impeding informational self-determination and the right to be nonconformist [ 36 ].…”

Section: Introductionmentioning

confidence: 99%

Medicaid Becomes the First Third-Party Payer to Cover Passive Remote Monitoring for Home Care: Policy Analysis

Berridge¹

2018

J Med Internet Res

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BackgroundRecent years have seen an influx of location-tracking, activity-monitoring sensors, and Web-cameras to remotely monitor the safety of older adults in their homes and to reduce reliance on in-person assistance. The state of research on these monitoring technologies leaves open crucial financial, social, and ethical cost-benefit questions, which have prevented widespread use. Medicaid is now the first large third-party payer in the United States to pay for these technologies, and their use is likely to increase as states transition to managed long-term services and supports (MLTSS).ObjectivesThis is the first study to examine how state Medicaid programs are treating passive remote monitoring technologies. This study identifies (1) which states allow location tracking, sensor systems, and cameras; (2) what policies are in place to track their use; (3) what implementation processes and program monitoring mechanisms are in place; and (4) what related insights Medicaid program stakeholders would like to learn from researchers.MethodsInterviews were conducted with 43 state, federal, and managed care organization (MCO) Medicaid program stakeholders about how these technologies are used in state waivers serving community-dwelling older adults in 15 states, and what policies are in place to regulate them. The interviews were analyzed by the research team using the framework analysis method for applied policy research.ResultsTwo-thirds of the states cover location tracking and activity-monitoring sensors and one-third cover cameras, but only 3 states have specific service categories that allow them to track when they are paying for any of these technologies, impeding regulation and understanding of their use at the state and federal level. Consideration of ethical and social risks is limited, and states struggle to understand which circumstances warrant use. They are further challenged by extreme resource restrictions and transitions to MLTSS by MCOs inexperienced in serving this growing “high-need, high-cost” population.ConclusionsDecisions about Medicaid reimbursement of technologies that have the potential to dramatically alter the way older adults receive supportive services are being made without research on their use, social and ethical implications, or outcomes. At a minimum, new service categories are needed to enable oversight. Participants prioritized 3 research aims to inform practice: (1) determine cost-effectiveness; (2) identify what type of information beneficiaries want to be generated and whom they want it to be shared with; and (3) understand how to support ethical decision making for beneficiaries with cognitive impairment. These findings provide direction for future research and reveal that greater interaction between policy makers and researchers in this field is needed.

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Section: Introductionmentioning

confidence: 99%