Who will demand access to their personal health record? A focus on the users of health services and what they want.

Abstract

3C have a constant need to manage their own personal healthcare. This requires managing information related to their conditions. Given that the nature of healthcare is information intensive, effective management requires much more than simply providing patients with access to their electronic health record within a hospital-based system. This practice has been followed with little ongoing success. 3C will need a health recording system specifically designed and implemented for them, with essential decision-support capabilities built in. Furthermore, while non-3C may experience peaks and valleys of increased consumption of healthcare services, which alter their contextual environment, 3C are constantly engaged through either the consumption of information to improve self-management or the consumption of health services to treat the underlying condition and all of the associated comorbidities. As a result, 3C will not only demand information within effectively designed PHRs, but they will do so in ways and in frequencies that we have not yet imagined. This has been the experience from many industries once the primary end-users have been empowered. We conclude with a single yet most important recommendation: that the healthcare system recognize 3C as powerful active participants with the ability to drive change and the adoption of PHRs. Opportunities must be provided to involve 3C in system design, testing and development.