chronic conditions” (PCAST, 2010). Consistent with this, the Office of the National Coordinator for Health Information Technology (ONC) included a goal of “empowering] individuals with health IT to improve their health and the health care system” in its draft federal health IT strategic plan (ONC, 2011) and has included this goal in the criteria for its meaningful use program.
Over time, discussions of patient or family engagement in health care have tended to revolve around three topics:
1. Patients’ access to their own personal health data in electronic formats (personal health information management);
2. Patients’ access to evidence-based information about their medical conditions, treatment options, and health-promoting activities and behaviors (more than 80 percent of Internet users in the United States search for health information online (Pew Research Center, 2011); and
3. Effective communication between a patient (and family or care- giver) and health care providers and the health care delivery system so as to improve safety and quality.
Such discussions center on the belief that patients who have the tools to manage their own health care data, who have ready access to reliable health-related information, and/or who can communicate more effectively with health professionals will be capable of making more informed decisions and will experience better outcomes. Recent trends with personal health records (PHRs) indicate that patient engagement tools may have a role in allowing patients and their families to become more involved in their care. Therefore, the impact of the growing use of patient engagement tools on patient safety should be considered.
There has been rapid growth of consumer health IT in recent years designed for the purpose of enabling patients and their families to become truly engaged consumers of health care (Poon et al., 2007). Tools such as PHRs can help patients feel more knowledgeable about their conditions, offer shared decision making, and can lead to fewer gaps in care (California HealthCare Foundation, 2010; Detmer et al., 2008; Zhou et al., 2010). For example, one study found that patients had eight times more adverse events than noted in their medical records when asked directly if they had experienced a problem with a drug (Gandhi et al., 2003). Importantly, PHRs can also be used to improve communications between patients and health professionals.