Abstract
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.
Highlights
Shared decision-making (SDM) is a process of engagement that balances patient preferences and values with clinical evidence in the service of better delivering person-centered health care.[1,2,3] Despite the growing importance of SDM strategies and tools to patients and health care systems, structural and cultural barriers related to data management hinder proactive use of such strategies and tools
Shared Decision-Making through the Use of Person-Generated Health Data Petersen et al e105
Patients have long relied upon clinicians to manage personal information generated during clinical encounters, and will continue to do so even as they gain access to personal health information (PHI) through eHealth tools such as patient portals and application programming interfaces (APIs)
Summary
Shared decision-making (SDM) is a process of engagement that balances patient preferences and values with clinical evidence in the service of better delivering person-centered health care.[1,2,3] Despite the growing importance of SDM strategies and tools to patients and health care systems, structural and cultural barriers related to data management hinder proactive use of such strategies and tools. The importance of electronic health records and decision support tools in improving patient safety and health care was one of the main drivers for the 2009 Health Information Technology for Economic and Clinical Health (HITECH) legislation, which provided financial incentives for clinicians, hospitals, and health systems to adopt electronic health records.[16] At the time, it was hoped that building a standard-based, interoperable electronic information infrastructure would make it easier to share electronic information among providers to coordinate care for patients as they moved through the continuum of care.[17]
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