Patient control of medical data: Enhancing the democratization of medicine

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  Quantumrun Foresight
• April 28, 2022

Insight summary

Patients having control over their health data is poised to reshape healthcare, enabling more personalized care and reducing disparities in access and quality. This shift could lead to a more efficient healthcare system, with doctors accessing complete patient histories, fostering technological advancements, and creating new opportunities for IT graduates. However, it also raises challenges, such as potential breaches of privacy, ethical dilemmas, and the need for significant investments in digital infrastructure and education.

Patient data control context

Patient data often needs to be communicated and shared between healthcare professionals, insurance providers, and other key stakeholders to ensure the quality of patient treatment. However, in many health networks worldwide, there is a lack of coordination between these groups, leaving most patient data siloed in different digital and data storage systems. Giving patients control of their information involves banning data blocking, allowing consumers complete access to their health data, and making them the ultimate owners of their data along with the access control privileges inherent in that authority. 

The healthcare industry has come under increased scrutiny since the late 2010s for providing unequal access and services based on race, ethnicity, and socioeconomic status. For example, in June 2021, the Center for Disease Control and Prevention released data showing that African American and Hispanic patients in the United States were almost three times more likely to be hospitalized for COVID-19 than caucasian patients. 

Furthermore, insurance providers and healthcare companies are often barred from sharing patient data quickly and efficiently, delaying timely patient treatment between service providers operating in separate networks. Delayed information transmission can lead to several problems, such as delayed diagnoses and treatment, duplication of lab work, and other standard procedures leading to patients paying higher hospital bills. Therefore, developing collaborative and symbiotic communication channels between key stakeholders within the healthcare industry is essential so that patients can receive timely and appropriate treatment. Experts further believe that allowing patients to have full access and control over their healthcare data will significantly improve equality in healthcare. 

Disruptive impact

In March 2019, the Office of the National Coordinator for Health IT (ONC) and the Centers for Medicare & Medicaid Services (CMS) released two regulations that allow consumers to control their health data. The ONC rule would mandate that patients be given easy access to their Electronic Health Records (EHRs). The CMS’ rule seeks to provide patients with access to health insurance records, ensuring that insurers provide consumer data in electronic form. 

Patients having complete control over their health data and different healthcare providers and institutions being able to easily share EHRs could increase the efficiency of the healthcare system. Doctors will be able to access a patient’s complete history, thereby reducing the need for diagnostic tests if already performed and increasing diagnosis and treatment speed. As a result, mortality rates may be lowered in the case of severe illnesses. 

Insurance providers and hospitals may partner with technology and software companies to develop applications and platforms that allow for different stakeholders within the healthcare industry to access patient data as needed on their phones or mobile devices. These stakeholders—including patients, physicians, insurers, and healthcare companies—may become better informed regarding a patient’s current condition, with new laws being devised that help to clarify and extrapolate upon a patient’s rights when sharing their personal medical data. 

Physician and health professional performance could also improve, as their treatment histories will form part of any health data database, leading to better implementation and evaluation within the healthcare industry. 

Implications of patients' control over health data 

Wider implications of patients controlling their healthcare data may include:

• Improved healthcare equity across healthcare systems as medical practitioner performance and treatment outcomes will be better tracked than previously, leading to more personalized care and reducing disparities in healthcare access and quality.
• Governments gaining easier access to population-scale macro health data that can help them plan local-to-national healthcare investments and interventions, leading to more efficient allocation of resources and targeted public health campaigns.
• A broader job market for IT graduates within application development, as different technologies compete to develop market-leading patient data applications for use within the healthcare industry, leading to more opportunities for employment and fostering technological advancements in healthcare.
• Increased incidence of cyberattacks within the healthcare industry due to patient data moving between digital systems and being accessible online, leading to potential breaches of privacy and the need for enhanced security measures.
• The potential for misuse of personal health data by corporations or third parties, leading to ethical concerns and the need for stringent regulations to protect individual privacy.
• A shift in the balance of power between healthcare providers and patients, leading to potential conflicts and legal challenges as patients assert control over their data, which may affect the traditional doctor-patient relationship.
• The potential for economic disparities in access to personalized healthcare, as those with the means to leverage their data may receive preferential treatment, leading to widening gaps in healthcare quality.
• A shift in healthcare business models as patient-controlled data becomes a valuable asset, leading to new revenue streams for companies that can harness this information and potentially altering the competitive landscape.
• The need for significant investments in digital infrastructure and education to enable widespread patient control over health data, leading to potential financial burdens on healthcare systems and governments.

Questions to consider

• Do you think insurance providers or healthcare professionals will resist the implementation of patient-controlled data and EHRs? Why or why not? 
• What novel startups or sub-industries may emerge from the proliferation of patient data-driven by this trend?