19 September 2024
Data security and compliance are critical concerns in non-profit health research organizations. As these organizations often handle sensitive health and biomedical data, the stakes are high. A data breach or failure to comply with regulations can lead to severe consequences, including loss of public and patient trust, legal penalties, and harm to research participants.
Privacy is pervasive in healthcare research and how the public feels about privacy issues directly links to the trust people have to participate in the healthcare establishment. Risks to public trust in the healthcare system increase as data increases in volume and access becomes more relevant to research. Despite the ambitious and honorable mission of nonprofits, they face unique challenges in keeping data secure and respecting patient privacy, often due to limited resources and expertise.
This blog explores the importance of data security and compliance in non-profit health research. It reviews the challenges faced by these organizations, best practices for maintaining security and compliance, and how Lifebit’s cutting-edge technology can provide solutions. We will also discuss how to protect sensitive data in a compliant manner while enabling impactful health research.
Health research data is among the most sensitive information that can be collected. It can include personal health records, genomic data, and other types of data that, if compromised, can lead to identity theft, discrimination, or other significant harm to individuals. In the last 10 years, several efforts in the public sector have signaled that data sharing is increasingly regarded as a scientific responsibility rather than an optional activity. For nonprofit organizations dedicated to advancing health research, protecting this data is not just a regulatory requirement but a moral imperative. The consequences of a data breach can be devastating, undermining the trust that participants and the public place in the research process.
Several key regulations govern how health data must be handled, with the General Data Protection Regulation (GDPR) and the Health Insurance Portability and Accountability Act (HIPAA) being the most prominent. GDPR, which applies to any organization handling data from European Union citizens, imposes strict requirements on data processing, storage, and transfer. HIPAA is specific to the United States and sets standards for protecting sensitive patient information.
Nonprofit organizations must understand and comply with these regulations to avoid severe penalties. Compliance ensures not only the protection of data but also the continuation of research activities without legal interruptions.
Data sharing can be a resource intensive-activity, requiring trade-offs between data sharing and other organizational priorities. Nonprofit organizations often operate with limited budgets and may not have the same access to expertise as larger institutions or private companies. This lack of resources can make it challenging to implement the sophisticated data security measures needed to protect sensitive health information. Additionally, nonprofits may struggle to keep up with the evolving regulatory landscape, leading to gaps in compliance.
Data protection laws are constantly evolving. As technology advances and new threats emerge, regulations like GDPR and HIPAA are updated to address these changes. For non-profits, staying compliant can feel like hitting a moving target. Continuous monitoring of regulatory updates and adjusting policies and procedures accordingly is essential to remain in compliance and avoid penalties.
One of the biggest challenges in health research is finding the right balance between data accessibility and data security. Researchers need access to data to make discoveries and advance their work, but this access must not compromise the security of the information. Increasingly so, much of what impacts an individual’s health and wellbeing occurs outside of a doctor’s office or hospital. This means that relevant data requires data generated outside of traditional healthcare and navigating this uncharted area presents privacy risks raised by under-regulation of this data. Nonprofits must carefully design their data management strategies to ensure that data is both secure and accessible to those who need it.
Encryption is a foundational element of data security. By encrypting sensitive data, nonprofits can ensure that even if data is accessed without authorization, it remains unreadable. Advanced encryption methods such as AES (Advanced Encryption Standard) are commonly used in health research to protect data at rest and in transit.
Conducting regular security audits is crucial for identifying vulnerabilities before they can be exploited. These audits should cover all aspects of data handling, from collection and storage to sharing and disposal. For non-profits, regular assessments not only help maintain compliance but also build trust with stakeholders by demonstrating a commitment to data security.
Human error is a significant risk factor in data breaches. Ensuring that all staff members are trained in data security best practices can mitigate this risk. Training should cover topics such as phishing, password management, and data handling procedures. Regular refreshers and updates are also important as threats evolve.
Centrally-held data repositories can create challenges for health non profit organizations, as the repositories might not be open access and the misuse of the data by bad actors, violation of intellectual property rights and possible disclosure of personal and confidential data still exists.
Federated data systems can help overcome the challenges of secure access and analysis of health and biomedical data. With federated technologies, researchers can be virtually linked to the data so that it never has to be physically moved or copied for access and analysis, enabling the data owners/managers to adhere to data governance and regulatory requirements effortlessly.
This decentralized approach enhances security by reducing the risk of data breaches and ensuring that data remains under the control of its original custodian. In health research, federated systems can facilitate collaboration while maintaining strict security and compliance standards.
Lifebit’s federated technology is designed to meet the unique challenges of non-profit health research. By providing secure access to diverse datasets, Lifebit enables researchers to connect and analyze real-world, clinical, and genomic data securely and in compliance with regulations. This approach not only protects sensitive information but also accelerates the pace of discovery by making data more accessible to researchers globally.
Suggested reading: Lifebit’s Complete Guide to Federated Data Analysis
The field of data security is rapidly evolving, with new technologies such as artificial intelligence (AI) and blockchain offering potential solutions to current challenges. AI can help detect and respond to security threats in real-time, while blockchain provides a transparent and tamper-proof way to record data transactions. Nonprofits need to stay informed about these developments and consider how emerging technologies can enhance their data security and compliance efforts.
Ensuring data security and compliance is not just about technology; it’s also about people. Nonprofit organizations should foster a culture that prioritizes security and compliance from the top down. This includes leadership commitment, ongoing staff training, and integrating security into every aspect of the organization’s operations. By building this culture, nonprofits can better protect their data and ensure compliance in the long term.
Data security and compliance are essential components of non-profit health research. With the right strategies, including strong encryption, regular audits, and leveraging federated technology, non-profits can overcome the challenges of limited resources and evolving regulations. Lifebit’s innovative solutions offer a powerful way to secure and manage sensitive biomedical data, ensuring that nonprofits can continue their vital work without compromising security or compliance.
Lifebit is a global leader in precision medicine data and software, empowering organisations across the world to transform how they securely and safely leverage sensitive biomedical data. We are committed to solving the most challenging problems in precision medicine, genomics and healthcare with a mission to create a world where access to biomedical data will never again be an obstacle to curing diseases.
Lifebit's federated technology provides secure access to deep, diverse datasets, including oncology data, from over 100 million patients. Researchers worldwide can securely connect and analyze valuable real world, clinical and genomic data in a compliant manner.