"Collaboration between academic institutions and the technology industry could lead to significant advances in consumer health IT, but too many factors prevent the two types of entities from working together.” according to a March report on managing personal health information by the Agency for Healthcare and Research Quality (AHRQ),
“Within the technology industry, information sharing could potentially lead to better, more efficient designs, yet developers tend to avoid such alliances out of concern for the potential costs and risks of collaborative efforts. To facilitate more partnerships across and within academia and industry, mechanism will need to be established that reward collaboration and protect the rights and investments of all stakeholders,” the report stated.
The report, prepared by Arlington, Va.-based Insight Policy Research for AHRQ, presents recommendations and an action agenda developed during a two-day AHRQ-sponsored workshop in July 2009. The goal was to develop a framework for characterizing personal health information management (PHIM) that would inform the design of effective consumer health IT systems.
According to the report, through small-group discussions and presentations, the participants considered the diverse needs of different consumer groups with respect to managing their personal health information and how consumer health IT technologies can be designed to better meet those needs.
Based on these discussion and presentation, the participants were asked to set an agenda for advancing the field of consumer health IT that would include specific recommendations for research, industry and policy.
Several steps that can be taken to promote innovation in consumer health IT, according to the report, including:
- Build a knowledge base about consumers’ PHIM needs and practices and related design principles;
- Support more interdisciplinary efforts to drive innovation; and
- Build a more robust health IT infrastructure to ensure access to all healthcare consumers.
“Additional research is needed on consumers’ PHIM practices and related design issues in order to develop consumer health interventions that can best support consumers in effectively managing their health and health-related information,” the report stated.
The report concluded that innovations in consumer health IT will require the development of a infrastructure that can support the dissemination of new solutions across different platforms. “This infrastructure will need to ensure that consumers have access to the technology regardless of their age, income literacy level or other potential barriers,” the report stated.
Recommendations in the report included:
- To address current gaps in knowledge, researchers should develop a taxonomy of needs and users that can be mapped to design strategies.
- To inform the design of IT-based PHIM tools for the broader population, researchers should identify and study “expert consumer groups" (e.g., frequent healthcare consumers) as models.
- To help support the development of consumer health IT solutions that meet the needs of all consumers, incentives should be established for industry to invest more resources in research & development of such applications.
- To build awareness about PHIM among young healthcare consumers, grade-appropriate PHIM education should be incorporated into school curricula.
- Policymakers and industry stakeholders should agree upon and establish standard ethical guidelines for the use and reuse of PHI.
- To promote the development and adoption of consumer health IT, new and existing policy implications need to be evaluated.
- To enable patient-centered care and ensure broad access to consumer health IT, policymakers and industry stakeholders need to identify ways to build a more robust health IT infrastructure.
To read the full report, click here.