Current research shows that managing personal health information is complex and practices vary greatly. For example, commonly used information such as the doctor’s contact information and prescriptions may be stored in multiple locations within a home and sometimes outside of the home.
Very often, health information is not only stored in multiple locations but also in multiple devices such as calendars and file cabinets. In addition, information needs may change as people age, and very often records of medical incidents are lacking and leave gaps in an individual’s health record. All of these factors affect the design of consumer health IT systems that need to be flexible and accessible for different types of users and across different settings.
At the same time, personal health records may require complex tasks to be performed by sophisticated consumers but they may find the tasks challenging. These tasks can include tracking and integrating health-related information from various sources, coordinating care across different healthcare providers, obtaining test results, supplying information on office visits along with other personal health information.
The collection of information may be even more complicated for older adults, chronically ill patients, people with disabilities, and the underserved, low income, minority populations. Other barriers to managing effective personal health information can include anxiety to use technology, low level of health literacy, costs to purchase and maintain consumer health IT applications, and anxiety concerning the security of the data.
Until all of these factors are considered, developers of consumer health IT solutions and systems will likely fall short of promoting patient-centered care and culturally competent care. Therefore, it is important to understand the implications for health IT design and to identify what kinds of applications such as interactive/dynamic applications or stand-alone applications are better suited for different types of information.
In 2009, AHRQ’s Health IT Portfolio funded a contract that resulted in an action agenda to study how individuals manage their personal health records and their needs. The contract provided for a comprehensive background report regarding consumer personal health record management practices and the effective development that is needed for consumer IT.
What was made clear from the report was that more research is needed in this field. As a result, on April 8, 2011, AHRQ released a Funding Opportunity Announcement (FOA) to find a way to build a knowledge base on how consumers could better manage their personal health information.
The FOA focuses on the needs and preferences of the diverse user groups, personal health information management practices, and user capabilities and motivation. This research will contribute to a better understanding of user needs and greatly impact consumer health IT design.
Go to http://grants.nih.gov/grants/guide/pa-files/PA-11-199.html to view Program Announcement (PA-11-199). The total cost awarded through this FOA will not exceed $500,000 per year for a project period of up to five years and will be awarded to only public or non-profits.