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Posted: October 27th, 2023
Developing and Improving the Safety and Security of Patients through Comprehensive Data Research
Data research is a vital tool for enhancing the quality of health care and ensuring patient safety. Data research can provide valuable insights into the causes, prevention, and treatment of various diseases and conditions, as well as the effectiveness and efficiency of health care systems and interventions. Data research can also help identify and address the gaps and challenges in health care delivery, such as disparities, errors, waste, and fraud. However, data research also poses significant risks to the privacy and security of patients’ personal and health information. Therefore, it is essential to develop and implement appropriate measures to protect the confidentiality, integrity, and availability of data, while enabling its responsible and ethical use for research purposes.
One of the key challenges in data research is to balance the potential benefits of data sharing and access with the potential harms of data misuse and breach. Data sharing and access can facilitate collaboration, innovation, and replication in health research, as well as improve transparency and accountability. However, data sharing and access also increase the exposure of data to unauthorized or malicious actors, who may exploit or compromise the data for illegitimate or harmful ends. For example, data breach may result in identity theft, discrimination, stigmatization, or psychological distress for patients. Data misuse may lead to inaccurate or misleading findings, biased or fraudulent claims, or unethical or illegal practices.
To address this challenge, several strategies have been proposed and implemented to enhance the safety and security of patients’ data in research contexts. These strategies include:
– Developing and enforcing legal and ethical frameworks that regulate the collection, storage, use, and disclosure of data for research purposes. These frameworks may include laws, policies, guidelines, codes of conduct, standards, contracts, agreements, or consent forms that specify the rights and responsibilities of data providers, researchers, and users, as well as the safeguards and sanctions for data protection.
– Implementing technical and organizational measures that prevent or mitigate the risks of data breach or misuse. These measures may include encryption, anonymization, pseudonymization, aggregation, or de-identification of data; authentication, authorization, or access control mechanisms; audit trails or logs; backup or recovery systems; firewalls or antivirus software; security testing or monitoring; risk assessment or management; incident response or reporting; or education or training.
– Promoting a culture of trust and responsibility among data stakeholders that fosters mutual respect, cooperation, and accountability. This culture may be cultivated through communication, consultation, participation, feedback, or evaluation mechanisms that involve data providers, researchers, users, regulators, funders, reviewers, publishers, or publics in the data research process.
By adopting these strategies, data research can achieve its objectives of improving the safety and security of patients through comprehensive data analysis while respecting their privacy and dignity.
References
– Al-Shahi Salman R., Beller E., Kagan J., Hemminki E., Phillips R.S., Savulescu J., Macleod M., Wisely J., Chalmers I. (2014). Increasing value and reducing waste in biomedical research regulation and management. The Lancet 383(9912), 176-185.
– El Emam K., Rodgers S., Malin B. (2015). Anonymising and sharing individual patient data. BMJ 350:h1139.
– Ohno-Machado L., Agha Z., Bell D.S., Dahm L., Day M.E., Doctor J.N., Gabriel D., Kahlon M.K., Kim K.K., Hogarth M., Matheny M.E., Meeker D., Nebeker J.R. (2017). pSCANNER: patient-centered Scalable National Network for Effectiveness Research. Journal of the American Medical Informatics Association 24(4), 1050-1059.
– World Health Organization (2016). Guidance on good data and record management practices. Geneva: WHO.
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