Selling patient health data can help systems in financial need and provide innovative opportunities for collaboration and research, yet health systems and patients often do not receive a fair price or agreement. A lack of understanding of commercial laws and intellectual property can mean that health systems are taken advantage of by commercial organizations that seek health data.
The researchers argue that to combat the potentially asymmetrical relationship between health systems and commercial industry, a framework for remuneration should be established. They suggest investing in staff that have a background in commercial law to help guide systems through the process. They also suggest that systems embrace alternative payment methods, such as setting up royalty payments to patients who opt to share their data or health systems taking equity in the collaborating partners company. From the regulatory side, the researchers argue that it is the responsibility of federal agencies to ensure equitable transactions.
