Bio-medical Ontologies Maintenance and Change Management

Design of an Online Physician-Mediated Personal Health Record System 267
the other hand, while PHR enables personalized self-management of health-related
information, it has been kept independently of hospital EMR systems. This division
between EMR and PHR has created challenges for individuals to access vast
amount of information already available from different hospital systems for selfcare
and error-checking. It also restricted the ability of medical professionals to
improve quality of services and for patients and health-care professionals to keep
disease care communication channel open outside of the health care service environment.
Therefore, it has become critical that a new health and disease electronic
data management paradigm should emerge.
2 Background
Creating and maintaining an accurate PHR system connected to backend EMR
systems from different sources for health-conscious individuals have the clear
benefits of enabling patient self-education and error-preventation. It also remains
an active challenging research topic for the following reasons:
First, the current process of obtaining EMR by individual patients is still a slow
and manual process, because the care providers moving information from EMR
into PHR need to abide by HIPAA rules. Every patient has the right to receive
copies of personal health records, if the patient completes and submits an
“authorization for release of information” form to the service provider (for an
example, visit http://www.myphr.com). The health care providers need to
document the entire authorization process and keep the patient’s EMR records
private and confidential from each other unless they are explicitly released by
patients. [5] The manual authentication and approval process takes time and may
curb most patients‘ desire to explore their EMR for health-related questions.
Second, current EMR systems have not been designed with individual patients
as end users in mind. To consider access of EMR by patients, many information
systems design choices, e.g., privacy vs. accessibility, functionality vs. usability,
guided vs. Un-guided, have to be carefully made. To protect patient privacy,
confidentiality and integrity of PHR, appropriate security measures have to be
incorporated. Accessibility of PHR with a patient‘s consent to other care
provider‘s EMR would also be ideal. Some patients may need to access their EMR
from their PHR system, which is extremely difficult to perform because the lack
of data standards and software interoperability among different EMR and PHR
software systems. Self-service may be preferred by the system designers because
the cost of human intervene is reduced; however, as the quality of software-based
services are not good enough to help patient users achieve satisfaction, guided
online service may be preferred. Therefore, involvement of medical professionals,
physicians and nurses, are necessary features to consider building in order to
promote instead of demote communications between patients and physicians. The
system architect needs to make make such decisions to find a balance between
feature offering and system usability within patient groups.
Third, social-economic factors, policy, and life-style choices may all contribute
to the interruption of integration between EMR and PHR. Individuals with issues
of mental health, ADHD, drug and alcohol problems, for example, may be less
likely to manage their personal records well than professionals with diabetic