The
Informatics Review
Thoughts
- Personalized Health Care Record Information on
the Web
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The
Informatics Review
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Presented at the Quality Healthcare Information on the 'Net '99 Conference held Oct. 13, 1999 in New York, NY
Internet-based, personal health care records have to the potential to profoundly influence 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 a patient has seen in his lifetime to one with a single source that is accessible from anywhere in the world and under the shared ownership and control of the patient and his provider(s). Current implementations of these records fall into one of three arbitrarily defined and named categories: personal health records, internet-based medical records, and personal health profiles.
Personal health records (PHRs) are created and maintained by an individual patient, or healthcare consumer, based upon their own understanding of their health conditions, medications, problems, allergies, vaccination history, etc. Useful features of PHRs 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 a record can help a patient concisely explain their health problems when they meet with their doctor. In addition, it could help document information that may be useful when filing health insurance claims.
Internet-based medical records are a sub-set of the physician's actual medical record as maintained in an electronic medical record (EMR), 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 include all of those of the PHR plus the ability for the patient to communicate with one's providers, request prescription refills and appointments, view a sub-set of the true medical record, see who has accessed the EMR (audit report), serve various electronic commerce requests such as prescription fulfillment at an Internet pharmacy, perform highly personalized and tailored information retrieval for a patient based on their true diagnoses and medications or interests, do automated claims submission and coordination, etc.
Personal Health Profiles are a 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. A user 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.
The current state of the art for each of these three types of personal health records is at best characterized as "beta releases". As such they have not had the benefit of thousands of users and uses or the iterative cycle of software refinement on either the back-end database or user interface that are required for the development of more polished systems. Nevertheless, they are an important first step in the process of trying to figure out how such record systems should work, what information should be contained in them, who will use them and for what purpose, and what are the legal and data confidentiality issues surrounding them to name just a few of the current questions.
In an attempt to describe the current state of the art for internet-based, personal health records, a survey of the five, publicly available personal health care record systems was conducted. The following sections describe the criteria that were used to evaluate the record systems. Table 1 presents the results of this survey including links to systems that have been promised, several that are for sale, and two internet-based medical record systems that are in beta testing.
Every site should have an easy to find, comprehensive, and easy to understand privacy statement. This statement should guarantee all patients that their data will be handled with the utmost care and will not be released to anyone without their consent. In addition, a site may state that it adheres to the Health on the Net (HON) code of conduct or has received the "TRUSTe" seal of approval. While no words or seals can ever guarantee a patient's privacy, at a minimum they serve to inform patients that the creators of the site understand the importance of maintaining patient privacy.
The medical content is the most important aspect of the entire record. Both the breadth, or total number of different types of data that are captured, and the depth, or amount of detail within each data type are crucial. Some of the most important data types are current medical problems, current medications, known allergies along with the reaction, past medical history, family history of disease, vaccination type and last date administered, demographic and biometric data to allow unambiguous identification of the patient, name and contact information for primary care physician, recent results of common laboratory tests, etc.
The second key concept regarding the medical content is the manner in which it is collected. Options here include guided capture in which questions are asked of the user that suggest specific answers, or free form entry fields that allow the user to type in any and all content. The advantage of the guided data entry model is that users are "prompted" to enter various facts and details. The disadvantages of such a model are that many data items do not easily "fit" into the suggested format.
The medical content can be captured in two distinct ways. The most common and easy to implement method is free text data entry forms. Unfortunately, data captured via free text data entry forms can not be used by the computer in any clinical decision support system since the computer can not "understand" or interpret the meaning of the text entered. To enable the computer to user the data in any future computations data must be entered in such a way that the responses can be matched to pre-existing, known data elements. Therefore items to be entered may be chosen from a list of elements, or data entered in free text fields can be compared to known data elements and any ambiguous entries can be fed back to the user in a short list for final selection. The use of such lists works best when the entire universe of data items from which the item will be chosen is relatively small (i.e., less than 9).
The various access methods for the data once it has been entered are the best indication of the "vision" of the system's creators regarding how the personal health care record may be used. For example, by allowing medical personnel to request a copy of the record via phone and have a copy faxed to them, the on-line record becomes an additional source of information in an emergency. By allowing medical personnel to interact with the record using a personal identification number (PIN), it becomes a central point of communication between the patient and provider. By only allowing the patient to view the record via the web, the system is only valuable to the patient. By simply adding a printable format to the record, the patient can take a hard copy along to his appointment with the physician.
An important decision that all system developers must make is whether to store the information required to identify a particular patient on the actual computer the user uses to login to the site or to require a user to re-enter a username and password. The use of "cookies" to store patient information on the local computer makes it easy for the sole user of a single machine to rapidly access his/her record, but poses a serious security threat, not to mention a loss of patient privacy, if the user is accessing his/her record from a "public", or multi-user, machine. In which case, the next user that logs in to the site will gain immediate access to the previous user's personal data. Use of such "cookies" is not justified and should never be implemented within a personal health care record system.
A wellness checkup or health risk appraisal is a questionnaire that the user fills out which is then "scored" in some way to give the patient an idea of where he/she stands with respect to other patients. For example a site my have a mental health checkup that "screens" a patient for depression or stress and then offers some advice on how to deal with any problems uncovered.
Many web sites are experimenting with the use of personal health care record systems. Of the sites surveyed only one had TRUSTe security approval, although all of the sites that actually stored patient data adhered to the Health On the Net (HON) code of conduct. Of all sites that collected data, only one utilized coded data entry. Several sites have implemented the use of personalized cards that contain a sub-set of all data entered and/or a personal identification number that would allow emergency personnel to view the patients record via the web or request a copy via phone.
As the field matures and more experience is gained these sites will improve in ease of use and functionality significantly. While much work has been done, there remains much work to do and there are still many questions remaining to be answered.
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The
Informatics Review
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