As discussed throughout this paper, consumer health IT has the potential to allow users to be more informed about their health and take a more active role in monitoring chronic conditions and tracking wellness behaviors. Emerging applications that create social networks among patients may also empower consumers. If more widely adapted, PHRs could help ensure that providers and patients have convenient access to more complete medical records.
Meeting these goals will require the engagement of many stakeholders. As discussed above, patients’ interest in consumer health IT may be motivated by a desire to improve their health and to make their medical experiences more convenient and potentially less costly. Advocacy and disease organizations may also have a role in highlighting the needs of the consumer and encouraging patient-centered health IT. Providers play a key role in granting access to portals and encouraging the use of an array of e-health tools. They may be motivated by desire to improve their patients’ care and possibly by efficiency gains. Payers also seek to make consumers (or employees) healthier and to make care more cost effective. Given the importance of reimbursement, payer policy may drive provider behavior. The vendors and developers of health IT products are, naturally, an important part of the picture as tools’ design and fit with consumers could affect uptake.
The federal government has several roles in expanding consumer use of health IT. Several experts also spoke of a continuing role of the government in helping to establish standards to promote interoperability and safeguards to ensure privacy. The need for better research, and the potential role of the government in helping to support or promote this research, was a theme echoed by several experts. A better understanding of who is using e-tools and what characteristics make them most accessible and appropriate to users may help elevate health IT use across subpopulations. As discussed above, there are relatively few nationally representative rigorous studies that address consumer use of health IT. This has left gaps particularly in detecting differences in prevalence rates by subpopulation of emerging technologies. Longitudinal studies that follow individuals before, during, and after a health event could also be valuable. Another facet of research that may be important is evidence to demonstrate the impact of consumer health IT. If it can be established that greater use of e-health tools will improve health and cut costs, one expert argued, then not only may individuals be more interested in trying them, but support from providers and payers may be more forthcoming.
Studying the use of health IT is a moving target. A report from 2004 quoted a consumer, who said: “I guess I’ve gotten to the point where I expect to be able to do these transactions electronically. I just expect to do business this way with the organizations that I deal with…Expectations change. In 2004 you expect to be able to do everything online. That’s different from 2002.” Imagine how many other individuals have developed similar expectations in 2008 and how many more will do so in the coming years. As one of the experts we consulted put it, “We’re on the brink of something big.” As new technologies emerge to give individuals greater ability to manipulate their health data and to interact and learn from other online patients, it is important to understand who is already part of that trend, which groups are being left behind, what the obstacles appear to be for greater uptake, and what policies can help overcome those barriers.