Rapid digitisation is transforming the healthcare sector, but it has also created concerns surrounding patient data that must be resolved. On a growing basis, innovations such as wearable devices, remote patient monitoring, artificial intelligence (AI), and electronic medical records (EHRs) are being seamlessly consolidated in healthcare settings to provide better care and improve diagnostics.

The Covid-19 pandemic highlighted the need for digital medical solutions to improve patient access, especially in underserved populations. The vast amount of data generated and aggregated was one of the pivotal steps in developing successful vaccines against the coronavirus in less than a year, as well as helping to control the spread of the disease via contact alerts through an app. In addition, using lateral flow tests and scanning the QR code afterwards became a common activity.

The rise of wearable devices and home diagnostics may have alleviated some hesitancy among the general public about telehealth and remote monitoring. However, with patients interacting and sharing data across multiple digital platforms, it can be a challenge to create a unified data profile of individual patients and confirm their consent.

Driving healthcare innovation

Data sharing is an integral part towards improving MedTech innovation. Wearable sensors can provide medical professionals with real world evidence-based intelligence that aids precision treatments. A data-driven approach replaces guesswork, enabling physicians and researchers to make accurate diagnoses based on real-world experiences.

In the complex area of genomic analysis, including next-generation sequencing (NGS), investigating the biological information of a patient to improve clinical care and assess disease risk helps improve health management and reduce overall costs.

The massive amount of personal health information (PHI) produced by smart technologies can allow healthcare corporations to develop novel medications and personalised therapies. However, managing consent and data privacy concerns around PHI is crucial to building trust and maximising the value of this information. Technologies must comply with all applicable legislation and standards regarding data collection, storage, and analysis and take precautions to safeguard sensitive patient information and prevent unauthorised access.

At the same time, it is vital for consumers to understand how and why hospitals and health systems use their information in an increasingly digital landscape where data is shared more widely.

Building transparency to encourage data sharing

Data privacy is a growing concern for many consumers at a time when news reports are rife with reports of unethical data mining and data breaches. A recent survey by the consent and preference management platform (CMP) Cassie revealed that 87% of respondents feel that companies obtain their personal information whether they choose to provide it or not. The report also reflected the general distrust among consumers about data collection; more than three-quarters of participants (77%) think that most businesses sell their clients’ personal information without their consent.

This apprehension intensifies when sharing medical records due to the highly personal nature of that information.

An investigation on Consumer Willingness to Share Personal Digital Information for Health-Related Uses by the Journal of the American Medical Association (JAMA) revealed that most consumers are reluctant to provide their economic and social media data for medical purposes. Researchers also found that participants were less likely to share their digital information with a pharmaceutical or digital technology company to improve healthcare quality or marketing.

In such a scenario, healthcare companies should adopt a more transparent approach to obtaining patient consent, while complying with data regulations and ensuring data security. Transparency should include making the sharing agreement available to the public. Companies involved with data acquisition should also provide detailed information about how patients can opt out of the process if they so desire. In addition, patients should be able to know when and where their data has been shared.

Having control over the information-sharing process is likely to encourage consumers to consent. According to the survey by Cassie, 79% of the participants welcomed having the ability to opt out of data collection. Meanwhile, 76% wanted companies to share how and where their data was being used. The study also revealed that a clear majority (90%) of respondents agreed that they would opt-in to cookies if given a detailed explanation of exactly who the company exchanges information with.

Enabling consent and compliance for patient data

Ethical and efficient data management requires accurate tracking, storing, and analysis of large amounts of patient information while implementing appropriate security protocols and encryption methods. There is also a need for compliance with regulations, which can be challenging because of the variations across different jurisdictions of data protection legislation and definitions of ownership, control, and usage. Incorporating a reliable CMP can help manage such issues.

A customisable consent and preference management platform such as Cassie allows companies to create a system tailored to their specific operational demands, ensuring compliance with required international or regional data protection standards. Cassie also offers a detailed audit trail of all access permissions and changes, making it easy to track, manage, and securely communicate a patient’s data preferences and consents.

Cassie collects consent and preferences from any data source or touchpoint. The platform has proven highly efficient in matching and grouping large volumes of complex medical datasets to confirm the identity of individuals across many platforms and create a unified data profile.

To learn more about the importance of managing patient data correctly, download the whitepaper below.