A Policy Framework to Support Shared Decision-Making through the Use of Person-Generated Health Data

Abstract

Background Individuals increasingly want to access, contribute to, and share their personal health information to improve outcomes, such as through shared decision-making (SDM) with their care teams. Health systems' growing capacity to use person-generated health data (PGHD) expands the opportunities for SDM. However, SDM not only lacks organizational and information infrastructure support but also is actively undermined, despite public interest in it. Objectives This work sought to identify challenges to individual–clinician SDM and policy changes needed to mitigate barriers to SDM. Methods Two multi-stakeholder group of consumers, patients, caregivers; health services researchers; and experts in health policy, informatics, social media, and user experience used a consensus process based on Bardach's policy analysis framework to identify barriers to SDM and develop recommendations to reduce these barriers. Results Technical, legal, organizational, cultural, and logistical obstacles make data sharing difficult, thereby undermining use of PGHD and realization of SDM. Stronger privacy, security, and ethical protections, including informed consent; promoting better consumer access to their data; and easier donation of personal data for research are the most crucial policy changes needed to facilitate an environment that supports SDM. Conclusion Data protection policy lags far behind the technical capacity for third parties to share and reuse electronic information without appropriate permissions, while individuals' right to access their own health information is often restricted unnecessarily, poorly understood, and poorly communicated. Sharing of personal information in a private, secure environment in which data are shared only with individuals' knowledge and consent can be achieved through policy changes.

Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data Security and Privacy

“…Petersen et al [ 76 ] discusses policy recommendations to facilitate the use of PGHD from apps, wearables, etc. in shared decision making between patients and clinicians.…”

“…Collectively, these steps establish a safe milieu for the management of PGHD, cultivating confidence among individuals and guaranteeing the responsible and efficient utilization of their data for healthcare provision. Petersen et al [ 76 ] underscores the importance of enhancing the security and privacy of PGHD by recommending several key strategies. Policymakers are called upon to fortify privacy and security protections for PGHD, bridging gaps in existing laws and ensuring strict enforcement.…”

“…Petersen et al [ 76 ] underscores the importance of enhancing the security and privacy of PGHD by recommending several key strategies. Policymakers are called upon to fortify privacy and security protections for PGHD, bridging gaps in existing laws and ensuring strict enforcement.…”

“…RQI2 [ 6 , 35 , 73 , 74 , 75 , 76 ] emphasize the incorporation of PGHD and its understanding from sources like mobile apps and wearables has wide-ranging impacts on healthcare decision-making. PGHD provides more comprehensive, real-time data about patients’ health and experiences, enabling more informed, personalized, and timely treatment decisions.…”

“…RQS1 [76][77][78][79][80][81][82][83][84][85] explores several important strategies that can help safeguard the security and privacy of PGHD. These include restricting data access to authorized personnel only, implementing robust data usage controls, maintaining audit trails to monitor data access, encrypting data at rest and in transit, securing mobile devices used to collect PGHD, mitigating risks associated with connected devices, conducting regular risk assessments to identify vulnerabilities, educating healthcare staff about security protocols, and carefully considering how to integrate PGHD into electronic medical record systems.…”