Patient-centered care involves respect for patients' values and preferences, coordination across care settings, cultural competency, effective communication, and patient education. To achieve patient-centered care, patients need personalized, timely, and understandable medical information. These needs could potentially be supported by technologies such as electronic patient portals and personal health records, which are likely to become more common in light of the Department of Health and Human Services' 2010 rule to encourage meaningful use of health information technology (IT). Consumer health IT has demonstrated efficacy for a number of outcomes, but has not yet demonstrated broad impact on healthcare quality in practice. Models of technology impact suggest that this is because the technologies have not diffused broadly and users are not using them optimally. Barriers to adoption and use include such factors as computer literacy, Internet access, usability, health literacy and numeracy, and sometimes a technology focus on meeting organizational goals rather than patient goals. We propose that potentially beneficial consumer technologies will improve healthcare quality only after they are widely adopted and used, and that adoption will rise only when the technologies match both patient abilities and their needs. We additionally propose that successfully matching technologies to patient needs requires a deeper understanding of patient needs for health information and information management. This proposal describes a research agenda to develop and validate a model of patient information needs, apply it to improve adoption of patient portals, and assess the effect of use of these portals on healthcare quality. The long-term goal of this research is to empower patients to assume a central role in the management of their health and health care, and quantitatively evaluate the effect. The first study described in this proposal uses qualitative methods to develop a patient information management needs framework. The second study validates this framework with quantitative usage data from patient portals. The third study employs human factors methods to improve the portals' usability and ability to meet patient information management needs. The final study will compare quality of care experienced by portal users and nonusers over time. This work, along with the training goals outlined in this proposal, will advance the field of consumer health information technology and position Dr. Jessica Ancker as an independent researcher at the intersection of informatics and health services research.
This project addresses the problem of patient engagement in healthcare, with specific reference to diabetes and congestive heart failure, which are two of the nation's leading causes of death and disability, and which disproportionately affect minorities and the elderly. Improvements to consumer health information technology in order to improve patient self-management of these conditions have the potential to reach a broad and growing segment of the American population in light of recent policy initiatives to promote EHR adoption nationwide.
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