Graduate Project CMSC 434 828C Spring 2004 Introduction to HCI Xiaoli Huang Personal Health Record PHR Keeping Introduction There has been a recent trend that patients adopt a proactive stance toward collecting and organizing their own medical information Emerging software applications allow patients to enter information abstracted from medical records into files stored on personal computers On the other hand the Internet also profoundly influences the delivery of health care in the 21st century by changing the loci and ownership of the record from one that is distributed amongst the various health care providers to one that is accessible from anywhere in the world and under the shared ownership and control of the patient and his her provider s Current implementations of these records fall into one of three arbitrarily defined and named categories personal health records electronic medical records and personal health profiles Sittig 2002 Personal health records PHR are created and maintained by an individual patient or healthcare consumer based upon his her own understanding of his her health conditions medications laboratory tests diagnostic studies problems allergies vaccination history etc It can be PCbased as well as Internet based Useful features of PHR include the ability to enter and record important health events calculate health risk indices do simple medication interactions and perhaps print a copy to take to the physician s office or on vacation Such records can help patients concisely explain their health problems when meeting with their doctors In addition they can help documenting information that may be useful when filing health insurance claims Electronic medical records EMR or electronic health records EHR or electronic patient records EPR are a sub set of the physician s actual medical record as maintained in an electronic record format which is created on the Internet by the provider in a secure web site and shared by patient and physician alike Features of the internet based record not only include all of those of the PHR there is also the ability for the patient to communicate with their providers request prescription refills and appointments view a sub set of the true medical record see who has accessed the EMR audit report Patients can also use EMR to serve various electronic commerce requests such as prescription fulfillment at an Internet pharmacy and perform highly personalized and tailored information retrieval for themselves based on their diagnoses and medications or interests Other services such as automated claims submission and coordination etc are also available at the fingertips of the patients Personal Health Profiles are medical knowledge based characterization of a user of a medical information service Such a technology facilitates convenient and personalized access to knowledge produced by medical practice the primary knowledge construction process Therefore a personal health profile enables exchange debate and reasoning about personal experiences with disease and the health care system as a secondary knowledge construction process Users can also be directed to specific chat rooms and message boards where patients and caregivers debate and exchange information regarding their personal experiences with disease and health care Regardless of the individual difference these three types of records are all electronic and shared health records They work together to build a shared care setting in which electronic healthcare records are functioning and benefiting all of the possible users ranging from physicians specialists and general practitioners nurses health managers public health authorities and epidemiologists researcher and ultimately the patients Due to the broad scope and great importance the EMR is most heavily studied among the three types In this review however we will focus more on the PHR and mainly discuss its development in the United States PHR Researches As mentioned before most current researches of electronic medical records focus on EMR rather than PHR As such it is still difficult to find literatures that directly discuss PHR However as the issues discussed in many EMR researches are essentially common to all types of electronic medical records and not exclusively to EMR the opinions and insights offered by these EMR researches shed light on the developments of PHR as well The current researches of electronic medical records focus on three aspects communication security and utility interface Communication Fig 1 Fig 1 Sittig D F 2002 illustrates several of the key actors and the relationships that are possible in the current shared health setting or the e health environment With the power of PHR the patient becomes the center of the setting Actors communicate with each other via shared electronic personal health records As addressed in many studies how widely electronic health records can be implemented largely depends on how effectively these records can facilitate smooth communication between the various actors in the shared health setting Communication functionality becomes a big concern of various electronic health records especially for clinical EMR This concern for communication is twofold First the sources of electronic medical information that currently exist e g laboratory data pharmacy data and physician dictation reside on many isolated islands that have been very difficult to bridge as can be seen in Fig 2 McDonald C J 1997 Each island system contains different data different structures and differing levels of granularity and each uses a different code system to identify similar medical concepts Fig 2 The solution to the first problem lies in the standards which the informatics community began to develop in the mid 80s IP HL7 ASTM DICOM LOINC SNOMED and others developed by the medical informatics community Standards provide the bridges to the many islands of electronic medical data so that the data can inexpensively be combined into an electronic medical record Second we need to capture the free text data in a structured and computer understandable form The medical content can be captured in two distinct ways 1 The most common and easy to implement method is free text data or natural language text entry forms See WebMDs current version of My HealthRecord for an example of this type of application at http my webmd com my health record Unfortunately data captured via free text data entry forms can not be easily used