A focused research agenda is needed to inform the development and implementation of integrated systems, guide education about these systems, and support the development of principles of responsibility for stakeholders. For example, while much discussion has addressed the potential of personal health records, there are relatively few rigorous quantitative studies that document their impact. The agenda should be used to inform the work of public research agencies and funders such as the National Institutes of Health (NIH), CMS, ONC, and AHRQ. This research agenda should also be shared with similar advisory groups of other nations.
The research agenda should address:
▪ Evolving desired functionalities for integrated PHRs including studies that solicit future functionalities from the perspectives of patients, special populations, payers, providers, regulators, patient advocacy groups, etc.
▪ Development and refinement of integrated PHR models for health communications and care, and identification of the applications and devices that hold the greatest transformative potential.
▪ Impact studies on the effectiveness of through a systematic review of business cases and clinical use cases, and on the impact of PHRs on individual health and their potential for proactive prevention and disease prediction.
▪ Evaluation of models of care delivery that are integrated with and systems.
▪ Liability issues and other legal barriers that confront implementers.
▪ Implications of integrated PHRs' use of multisource, heterogeneous and context-aware information for privacy protection, security and semantic interoperability.
▪ Use of informed consent with the integrated s a process for individuals to authorize the exchange of personal health information for various purposes (e.g., health data reuse for public health, research purposes).