Industry experts believe that empowering patients in their own care -- by providing them with access to their medical information, along with appropriate resources to manage their health -- can significantly improve outcomes and even reduce health care costs.
So it is not surprising that engaging patients and families in care is one of the five goals of CMS’ recently proposed "meaningful use" definition. Specifically, to qualify for the meaningful use incentives, hospitals and physicians are expected -- among other requirements -- to provide patients with electronic copies of their record, discharge instructions and procedures.
While the stage 1 meaningful use requirements do not mandate any one medium for providing patients with access to their record, one could argue that personal health records are the ideal platform for engaging patients in care because, as defined by HHS, a PHR is "[a]n electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual."
A Platform for Care Coordination
PHRs are beneficial to consumers because they:
- Allow for insight into their medical care;
- Provide a platform to communicate with their care providers; and
- When interoperable, create a comprehensive view of care delivered across disparate providers.
Moreover, because patients can access a PHR anywhere and grant access to their physicians, interoperable PHRs allow for more comprehensive medical records. In fact, some experts contend that PHRs could act as a proxy or interim form of health information exchanges, to the extent that multiple physicians -- with patient consent -- can access a Web-hosted PHR containing clinical care summaries, medication lists, allergies, problem lists and other patient-entered information.
Hospital-Tethered PHRs Fall Short on Patient-Centric Focus
Given the potential for PHRs to serve as a platform for greater care coordination and simultaneously empower patients in their own care, it is likely that future stages of meaningful use will include PHR adoption as one of the many requirements for engaging patients and families in care.
In the meantime, several hospitals have already begun offering their patients access to a PHR linked to the electronic health record and tethered to the institution. Unfortunately, despite good intentions, such tethered PHRs fail to migrate toward a patient-centric health care system and are unlikely to gain much traction from patients.
There are three problems that are likely to arise from these hospital-based PHR platforms.
- Many of these hospital-tethered PHR solutions are proprietary, with varying degrees of sophistication and functionality; however few, if any, are truly portable for patients. Specifically, patients only can access the PHR through the hospital and cannot take it with them when relocating or changing providers.
- Most of these PHRs are owned and managed by the provider, rather than by the patient. In such instances, PHRs only contain patient visit data drawn from the hospital’s information systems. Some hospitals might permit patients to upload data from home monitoring devices, but they rarely allow the PHRs to accept direct data feeds from other health care providers who treat the patient. Similarly, the hospital providing the PHR is unlikely to be able to electronically link to a patient’s existing PHR sponsored by another care provider.
- Such unique provider-sponsored PHRs create multiple sources of health information for patients to manage, defeating the goal of creating a comprehensive medical record. Each hospital-tethered PHR is similar to giving the patient yet another e-mail account to navigate for care management. Needless to say, in the current course, PHR investments are unlikely to realize the ambitious goal of engaging patients in care as a means to improving outcomes.
Rethinking PHR Sponsorship
If we want patients to use PHRs to manage their health, these care management solutions must be the single source for medical information -- including data generated by all care providers and data entered by the patients themselves. To that end, there are two viable options.
The first involves hospital-based patient portals with the ability to link to patient-owned PHRs, such as GoogleHealth and Microsoft HealthVault. These flexible PHR platforms can be offered by the hospital but should be managed by the patient, who can decide which aspects of their medical record -- such as test results or prescriptions -- they would like to download from the hospital’s patient portal to the PHR. Similarly, patients can decide to populate their PHRs with medical information from other health providers, as well as with data from their home monitoring devices.
Meanwhile, an alternative -- and one that might have greater long-term value -- involves requiring local health information exchanges to provide all patients in their region with a common PHR platform, which would be populated with data submitted by various care providers in the community but managed by individual patients.
If the central aim of health data exchanges is to create a comprehensive patient record accessible to all care providers, as appropriate, it seems logical that they would provide patients with a PHR populated with the all the medical information available to providers. This would not only provide the patient with a comprehensive medical record but would reduce the burden on each health care provider to build interfaces for the different PHRs available to their patients from other providers.
Irrespective of the approach, the goal should be to make PHRs truly patient-centric -- for the patient, managed by the patient, and containing the patient’s medical information. In handing over the reins to the patient, PHRs should also have the appropriate functionality to allow a patient to select different levels of consent for sharing their record with various caregivers.
Only when we achieve this level of patient ownership over their data might we begin to genuinely empower them in care management.