Kristen Painter and Dr. Barbara Heise, College of Nursing

As the older adult population has aged, learning to manage their health and concurring chronic disease conditions has become a prevalent topic for health care providers. It has been shown that advances in information technology can improve healthcare outcomes (IOM, 2001; IOM, 2008). Recently, personal health records (PHRs) have emerged as an important information exchange technology to avoid injury and death by increasing access to patient health information by clinicians (AHIMA/AMIA Position Statement, 2007). Yet older adults with chronic illnesses who may gain the most from this technology are reluctant to use a PHR system.

The aim of this research was to understand Hispanic American older adults’ perceptions of the benefits, barriers, and readiness to use a USB (Universal Serial Bus) PHR system to manage their chronic illnesses. It is hoped that the knowledge gained from the study will provide a valuable link to adoption of a PHR by minority populations.

Research involved a focus group session in which older adult Hispanic Americans were provided information regarding PHRs and then were asked several questions regarding their knowledge, perception, and willingness to begin using a personal health record to manage their own health. A translator translated the presentation and questions. The focus group began with an explanatory PowerPoint presentation that highlighted the use of PHRs in general. Participants were then shown how a USB PHR is programmed to include personal identification information and basic health status, as well as how a USB PHR can keep track of information such as MRI images, blood sugar levels, and other historically significant information pertinent to care. An I-Clicker automated response system was use to poll participants’ responses to several questions, and questions were analyzed statistically.

Overall, participants knew little about PHRs systems before the presentation, and the majority said they would be willing to use USB PHRs, especially if they had help to fill them out. It is the conclusion of this study that PHRs will be of benefit to older adults many different backgrounds, but acclimating one to their use will depend on the background of the older adult.

During the focus study, it became evident that a barrier to the research was the need to have confidentiality forms signed by participants. Participants came from several Hispanic countries, and were concerned that by signing the forms, they would no longer remain anonymous. Several people who were originally willing to participate left the focus group before it began because of this. Research was still conducted with an adequate number of participants, but had there not been an issue with confidentiality, statistics could have been more representative of the older adult Hispanic population.

Another barrier that became evident during the presentation was the interpretation of the questions presented to the focus group. Although they were translated into Spanish for the participants, the phrasing of the questions and the formatting for response became difficult for participants to understand, especially to those who had never used an automatic response system before.

If anything, this study has taught me that research regulations have a long way to come before they meet the needs of different cultures. It seems necessary for one to follow standard prerequisites to protect validity of results in research, such as maintaining certain agreements of confidentiality, liability, etc. There is historically valid reasoning for such rules: to protect the research subjects and maintain confidence in the integrity of research as whole. It seems, however, that as long as these prerequisites for validity in research are deemed to be continually necessary, barriers to obtaining that information will continue to be difficult among subjects from other cultures who are not as comfortable with such tight regulations. We may continue to expect acculturation from other minority groups in the United States in regards to following traditional American policies, but with the growing minority population at hand, it may do us good to learn to have a little acculturation ourselves. By better coming to understand minority populations’ take on research regulation, we will better know how to approach further research of these minority populations.

References

• American Health Information Management Association (AHIA)/American Medical Informatics Association (AMIA) (2007).The value of personal health records: A Joint Position Statement for Consumers of Healthcare. Journal of AHIMA, 78(4), 22, 24.
• Institute of Medicine (IOM (2001) Crossing the Quality Chasm. Washington, DC: National Academies Press.
• Institute of Medicine (IOM) (2008). Retooling for an Aging America Washington, DC: National Academies Press.