Assisted living facilities residents' and relatives' preferences for family access to their medical and personal information

Abstract

The purpose of this study is to explore privacy preferences of elderly residents and their relatives at assisted living facilities. In the past year, there has been a large increase in the interest and concept of accessing medical information as a right for every American. The Health Information Technology for Economic and Clinical Health Act (HITECH Act) as well as the Office of National Coordinator for Health IT's Nationwide Health Information Network (NHIN) project are prime examples of this increased awareness and interest. This pilot study focuses on just the privacy access rights for family access. To explore this, a structured interview questionnaire was created and administered to 12 participants, 10 of whom were residents at two assisted living facilities and two of whom were relatives of residents. The most interesting result was that some residents understand "access" to mean that the person accessing the information can also act upon that information. An actionable discovery is that illness has a huge impact on how often the participants wanted to review their access preferences, as well as what their preferences are. Further study is required to fully explore these findings.