Five ways to build trust in patient data sharing

Primarily, patients entrust their lives and their sensitive personal information to physicians and the entire healthcare ecosystem, comprising healthcare providers, insurance providers, specialists, labs and other third parties at large.

Patient data sharing among various stakeholders for research purposes forms the baseline for innovative new healthcare solutions pertinent to diagnosis, treatment, preventive measures, etc.

Healthcare organisations are increasingly collecting patient data from a variety of sources, such as clinics, wearables, social media and mobile applications.

While this data can be beneficial for research and marketing efforts, the process raises concerns about the privacy and security of individuals whose sensitive information may be used without their knowledge or permission. This data aggregation practice has the potential to compromise individuals’ privacy, confidentiality and security.

How do patients feel about their data being shared with third parties?

Patients are willing to share their private health information so long as this helps to track and manage their health or public health initiatives, or where third parties are directly involved in their treatment. In all cases, however, patients prioritise strict privacy and security protocols to be in place to ensure the confidentiality of their data. If patients have trust in an organisation’s ethical conduct and purposeful data sharing, this increases the likelihood of data being shared.

According to a paper in Jama Network Open, the researchers surveyed more than 3,500 individuals in 192 different scenarios about their willingness to share their personal data.

Researchers found individuals were more willing to share their health information if four features of privacy protection were met: consent; transparency of the collected data; consumer and regulatory oversight; and the ability to delete data. Consent was the most prioritised feature, followed by data deletion, oversights and transparency.

Here, we examine five ways to build trust in patient data sharing.

1.     Consent and transparency

Patient consent and transparency are essential in forming a trusting relationship between patient and provider. Consent allows patients to be in control of their data, meaning they can make informed decisions about their healthcare and revoke or restrict information sharing whenever they want. To ensure trustworthiness within an organisation, policies should emphasise open communication that explains the type of data sharing that will occur, who will have access to the data, and the potential risks or benefits.

What should healthcare organisations do?

• A transparent privacy policy should be the cornerstone of all communication, including providing clear and concise information about patients’ data collection, its use, and sharing and safeguarding practices
• Implement a robust consent and preference management system that offers granular consent management options and provides mechanisms to easily revoke or modify consent preferences

2.     Data privacy and security

Today’s healthcare environment has seen an influx of data breaches and security incidents, creating a heightened awareness among patients regarding the potential risks of mishandling personal data. This has made it increasingly important for healthcare organisations to demonstrate their commitment to protecting patient data by taking comprehensive privacy and security measures.

What should organisations do?

1. Instill a sense of confidence in patients that their data is being handled carefully, with protective measures in place such as encryption, access controls and Data Subject Access Requests (DSAR)
2. Demonstrate commitment to patient privacy, and minimise the risks associated with excessive data sharing or storage by collecting only the necessary amount of data and processing it for specific, well-defined purposes
3. Continuously monitor data protection practices and mitigate potential security risks by conducting regular vulnerability assessments and security audits, and training employees on data privacy and security awareness

3.     Compliance with regulations

The data privacy landscape is consistently evolving to ensure greater protection for individuals. Health data protection laws such as the Health Insurance Portability and Accountability Act (HIPAA) have been instrumental in safeguarding the private health information of patients. However, advancements in technology, such as wearables, mobile applications and social media platforms, have necessitated the implementation of new regulations.

The EU’s General Data Protection Regulation (GDPR) ensures data privacy and security across Europe, while Washington State’s My Health, My Data Act in the US has been implemented to protect the health data collected from wearables, apps and other digital sources.

What should organisations do?

• Be compliant with all the applicable laws and regulations for different types of health data as per their sensitivity
• Monitor and stay updated on the evolving regulatory landscape
• Take a proactive stance when implementing and enforcing policies, procedures and technical measures that guarantee an organisation meets all applicable compliance requirements

4.     Data sharing and agreement

The exchange of health-related data plays a key role in enabling healthcare, with information being shared between various entities to provide healthcare providers with comprehensive patient information, while supporting medical research and identifying any potentially concerning public health trends or patterns.

This type of data sharing can bring immense benefits to the healthcare industry. However, it must be conducted in accordance with agreements that protect against the risks of unauthorised access, data breaches, privacy concerns, compliance violations and loss of data ownership.

To ensure this level of security, organisations need to implement comprehensive policies and procedures related to health data.

What should healthcare entities do?

• Data sharing agreements should provide comprehensive data protection and security measures for users’ data, which ensure their personal information is stored securely, is inaccessible to unauthorised persons and is used only for the purposes stated in the agreement
• Agreements should outline the roles, responsibilities and legal obligations of the parties involved in data sharing to ensure compliance with relevant regulations
• Agreements should address issues such as data ownership and usage limitations as part of the legal and contractual framework for sharing data

5.     Education and patient empowerment

Many patients may not at first fully understand the complexities of consent management or the implications of data sharing. However, they will be willing to share their personal information if they are made aware of the associated benefits, choices and risks.

What should healthcare institutions do?

• Investing in educational initiatives is key to ensuring individuals can truly understand the implications of health data sharing. To do this, resources, such as FAQs, informational videos and privacy guides should be made readily available
• Involve patients in the design and governance of health data sharing initiatives to foster a sense of ownership and trust
• Seek patient input through surveys, focus groups or patient advisory boards to comprehend their concerns, suggestions and preferences, etc.

Conclusion

Healthcare organisations should consider patients’ concerns regarding their health data being shared with third parties. With the current reluctance to share this kind of information, numerous opportunities in the healthcare sector will be missed. To overcome this barrier, healthcare organisations must find ways to boost consumer confidence by revising their policies and introducing features that will alleviate any privacy concerns.

How Cassie can help healthcare providers build patient trust?

• Cassie’s fully compliant Consent and Preference Management platform gives patients control over their personal information, so they can see what is being collected and who has access to it
• Cassie helps to keep patient data safe and secure, following the rules of the HIPAA. This way, healthcare providers can ensure patient data is used correctly and only with the permission of the patient
• Cassie provides an audit trail for any changes and access permissions, giving healthcare providers added peace of mind that their patients’ data is secure

By using Cassie, healthcare organisations can give patients more confidence and trust in sharing their personal information. This will give both parties a better understanding of how this data is used, and will help to foster long-lasting relationships between them.

Cassie gives healthcare providers the opportunity to focus on building patient trust and achieve the following goals:

• Ensure full HIPAA and GDPR compliance (and any other regulation that affects them)
• Store patients’ personal data securely
• Provide a complete audit trail of all access permissions and changes
• Offer a convenient way to track, manage and share sensitive data securely
• Understand how patient data is being used and ensure it is used appropriately