Medical data is collected through various methods, ranging from self-report clinical surveys to hospital administrative records, registries, or clinical trials. The use of clinical data provides valuable information for authorized medical research studies. These studies introduce new methods of medical care and improve the quality of life. It is essential to obtain explicit consent before any use of medical data. In some circumstances, such as retrospective studies, explicit consent should be obtained, and in Quebec, a representative may provide consent. Furthermore, medical data should be de-identified and securely stored to prevent future data breaches.
Health data’s value has surged in recent years, driven by innovative technologies that are transforming healthcare delivery. These advances include but are not limited to health apps, wearable, AI diagnosis tools, and public health surveillance tools. Startups are playing a pivotal role in shaping these innovations. For instance, companies like Babylon Health, a startup leveraging AI for healthcare, have developed a virtual health assistant that offers personalized health advice and symptom checking through a mobile app. This demonstrates the growing influence of startups in providing accessible and efficient healthcare solutions. Oura Ring has gained recognition for its smart ring technology, which tracks various health metrics such as sleep patterns, activity levels, and physiological signals. PathAI is making significant strides. This startup utilizes artificial intelligence to enhance pathology and diagnostic workflows, aiding pathologists in making more accurate and efficient diagnoses. BlueDot stands out in public health surveillance tools. This Canadian startup employs AI algorithms to analyze vast datasets, including news reports, climate data, and airline ticketing information, to identify and predict infectious disease outbreaks. Their early warning system successfully predicted the spread of COVID-19, showcasing the potential impact of innovative startups on global health monitoring.
However, not all instances of medical information used are for benevolent purposes. The utilization of direct or indirect identifiable medical data by commercial businesses raises profound ethical concerns. When businesses access and leverage sensitive health information, there is a potential for exploitation and misuse. The primary concern lies in the possibility of compromising individuals’ privacy and exploiting their vulnerabilities for financial gain, such as the misuse of personal health information by insurance companies. Commercial entities, driven by profit motives, may be tempted to manipulate or sell this data, leading to unauthorized disclosure and potential harm to the individuals.
Sometimes breaches of medical information happen, and there is an increasing trend in personal and medical data breaches, especially in the United States. Annually, millions of records of medical data breaches occur in the US. This information can be very harmful to patients, especially if not used properly by medical insurance companies. In the United States, this information is even more significant since publicly funded healthcare is not very common and publicly available. There are various lawsuits in the United States alleging breach of sensitive medical information of patients. According to the recent lawsuits:
- Excela Health, based in Greensburg, Pa., is accused of improperly disclosing patients’ protected health information to Facebook and Google.
- Mount Nittany Health, located in Clearfield County, Pa., allegedly used pixels on its website, transmitting certain patients’ protected health information to Facebook and Google.
- Steward Health Care System, based in Dallas, faces a lawsuit filed on April 3, claiming that its website utilized a Meta pixel tracking tool, sending specific patient information to Meta and Google.
- An anonymous patient from Orlando Health filed a lawsuit on March 16, alleging that the health system’s website employed pixel-tracking technology, resulting in the transmission of certain patient information to Facebook.
Recently, the Quebec government enacted Law 25, requiring all businesses to follow rules for the use of sensitive information. These changes include appointing a privacy officer and conducting privacy impact assessments for all projects involving sensitive information, including health data. The law also stipulates that technologies cannot track personal information unless explicit consent is obtained from the user. However some companies such as Google and Meta Relying solely on legal measures may not suffice, necessitating continuous vigilance and adaptation. Achieving a delicate balance between technological innovation, healthcare progress, and robust privacy protections demands collaborative efforts among legislators, technology developers, healthcare professionals, and the broader community. To address emerging challenges, a proactive reassessment and potential enhancement of existing legislation becomes essential. This comprehensive approach extends beyond legal compliance, incorporating ongoing ethical considerations, technological safeguards, and public awareness to ensure the responsible and ethical use of medical data in the evolving healthcare landscape.