Please read the following study:
Bonomi, L., Jiang, X., & Ohno-Machado, L. (2020). Protecting patient privacy in survival analyses. Journal of the American Medical Informatics Association, 27(3), 366–375.
Discuss your response to this survival analysis study. Do you have the same concerns as the researchers regarding the patient privacy issues when presenting actuarial/survival analysis tables? Do you have other suggestions regarding protecting patient privacy within a study?
Expert Solution Preview
Introduction:
As a medical professor responsible for designing assignments and evaluating student performance in a medical college, I have read and analyzed the study titled “Protecting patient privacy in survival analyses” conducted by Bonomi, Jiang, and Ohno-Machado (2020) published in the Journal of the American Medical Informatics Association. In this study, the authors discuss patient privacy issues in presenting actuarial/survival analysis tables and provide suggestions for protecting patient privacy within a study. In this response, I will discuss my thoughts on the concerns raised by the researchers and provide additional suggestions for safeguarding patient privacy in a study.
Response:
Upon reviewing the study on protecting patient privacy in survival analyses, I share the concerns raised by the researchers regarding patient privacy issues when presenting actuarial/survival analysis tables. The utilization of such tables that convey patient-specific survival information has the potential to compromise confidentiality and violate patients’ privacy rights. By presenting detailed information about individual patients’ prognoses, including their time to event outcomes, it becomes possible to re-identify patients or infer sensitive medical conditions, leading to potential harm.
To address this concern and protect patient privacy within a study, there are a few additional suggestions that could be considered. Firstly, researchers should adopt rigorous data de-identification techniques before conducting survival analyses. This would involve removing or generalizing any identifiable information such as names, addresses, social security numbers, and other personal identifiers.
Secondly, researchers can consider implementing data sharing agreements or collaborative research approaches that allow access to survival data with privacy restrictions. By ensuring that only authorized individuals or research entities have access to sensitive patient data, the risk of privacy breaches can be reduced. Additionally, researchers should implement strict data access controls and monitoring mechanisms to prevent unauthorized data disclosures.
Furthermore, utilizing advanced statistical techniques, such as data aggregation or binning, to present survival information at a group level rather than individually, can further protect patient privacy. By summarizing or reporting survival outcomes for cohorts or subgroups rather than individual patients, the likelihood of re-identification or privacy breaches is significantly reduced.
Additionally, researchers should prioritize obtaining informed consent from patients when collecting data for survival analyses. By explaining the purpose of the study and seeking patients’ permission to use their data while ensuring complete anonymity, researchers can maintain ethical standards and respect patient autonomy.
Lastly, it is essential for researchers to adhere to relevant privacy regulations and guidelines, such as the Health Insurance Portability and Accountability Act (HIPAA), or any local regulations governing medical data privacy. By remaining updated with the latest legal requirements and implementing necessary safeguards, researchers can ensure compliance with privacy standards.
In conclusion, I agree with the concerns raised by the researchers regarding patient privacy issues when presenting actuarial/survival analysis tables. To safeguard patient privacy within a study, it is crucial to employ appropriate data de-identification techniques, implement data access controls, utilize statistical aggregation methods, obtain informed consent, and adhere to relevant privacy regulations. By implementing these suggestions, researchers can strike a balance between conducting valuable survival analyses and protecting patient privacy.
