INDUSTRY NEWS

Personal Health Records – Closer to Reality

The Personal Health Record that every patient carries is suddenly the hot topic of our time. President Bush is promoting it, top politicians of both parties support the concept, and many health informatics experts believe that it is the solution to many of problems hindering progress in health informatics.

Two factors are pushing Personal Health Records (PHRs) to the top of the healthcare agenda. First is the current state of the health informatics industry. Let’s face it; there is no short-term solution to full interoperability between hospital A and hospital B, hospital C and the nursing home, and between the hospitals and local physicians’ offices. Despite the rhetoric and activities, we do not have sufficient interoperability to integrate all health information on a nationwide basis.

Second, due to the Internet, patients are starting to be interested in their health information. Reports indicate that almost 100 million individuals are consulting the Internet in search of health information. Individuals are seeking health information at least partly because they are unhappy that providers do not have access to their complete and accurate health information. During a day’s visit at the hospital, patients have to provide personal and health information several times to different practitioners and/or departments. And no one seems to know what the other is doing.

The answer is to create a personal health record that is safe and secure, one that holds all relevant health information and to which access can be provided to any healthcare professional when needed and authorized. An increasing number of individuals are placing (or agreeing to have posted) some or all of their health information on a website that they consider secure. The intent is to make such information available not only to the individual but also to health practitioners (including personal physicians and pharmacists).

One principle of the information society is the recognition that any person should have an interest in his health, rather than leaving such matters solely to the medical profession. This means that a responsible individual should:

• Have a copy of all the health information created about her by all her providers
• Understand – at least in general terms – the content of her health history, treatment, and status
• Use any resource to learn more about health matters that may affect her
• Be in partnership with her caregivers (rather than having an child/parent relationship with the caregiver

This should not only be for an adult’s own health, but also for that of his children or his elderly relatives for whom he is responsible.

The Five Types of Personal Health Records
There are several different types of personal health records.

1. Off-line Personal Health Records

   The idea of a personal health record is not new. For decades, public health services in many countries have been giving parents of newborn infants a booklet to record early health data. Millions of parents routinely start a paper-based patient record for their children. Also, as adults, some people are interested in their own health records and ask their providers for copies, which they keep in file folders. And since 1995, commercial software has been available for individuals who want to record their health information on their personal computer.
2. Web-based Commercial/Organizational Personal Health Records
   The Internet makes it possible to store one’s health information on a (more or less) secure web page. This means that accessibility is almost unlimited geographically. Wherever there is access through a wired or wireless telephone connection, a person can access the information or authorize a practitioner or pharmacist to access certain information from the website of choice. There are four types of providers of this service:
   • Commercial organizations that provide the service free and derive revenue from sponsors or from data mining
   • Commercial organizations that charge the person a fee for maintaining the information
   • Professional organizations that provide this service to their members or other affiliates (for a fee or as a service bundled with other charges and benefits)
   • Local, regional, or national health organizations that provide this service to specified population groups. These are usually not fee-based as they are sponsored by a health authority such as the public health service.
3. Functional/Purpose-based Personal Health Records
   These are web-based personal health record systems that are offered in connection with a related service. The service may be an interpretation of a health record and/or the legal advice regarding a person’s care situation. The most common function is that of providing emergency or health services to business people outside the geographic boundaries of their primary healthcare provider. A typical service may maintain the health record for the purpose of being able to arrange healthcare in any country in the world, or in order to arrange emergency healthcare (including helicopter transportation to the nearest provider facility) for a client.
4. Provider-based Personal Health Records
   Increasingly, providers, i.e., hospitals, clinics, and health plans make some of a patient’s health information available on their website. This service is usually part of the care provided, and there is no charge. Such information typically includes:
   • Appointment information
     In most cases, appointments are posted on the website for patients to look up. Some providers offer an automated system through which patients can make appointments. However, in many cases this requires blocks of time reserved for emergency cases and other practitioner needs.
   • Medication information
     Patients can see a listing of their medications with potential links to web information regarding how to use it. They can also check on potential side effects and related information.
   • Allergies
     It is very helpful, potentially vital, to patients to have a listing of their allergies, which can be shared with practitioners. In a number of cases, when patients see the list of allergies derived from their medical record, corrections can be made, or, allergies can be added that were not obvious beforehand.
   • Test Results
     Patients increasingly ask to know their test results, particularly laboratory results, even when the practitioner is not available to review them first. Therefore, many provider organizations post the lab results on a website that is accessible to both practitioners and patients.
   Beyond this basic information, providers experiment with posting additional parts of the health record on a patient-specific and patient-secure website that ultimately can contain most of the health record information.
5. Partial Personal Health Records
   Some 24,000 websites have detailed health information for consumers. Most of the sites get their revenue from data mining and advertising. In many cases, an individual has provided not only identification but also detailed health information in order to access the information or to benefit from the website. For instance, a diabetes patient may have to provide detailed health information in order to participate in a website. This way, patients create a mostly disease-specific partial health record that is usually available to them at the website but may also be used by the website provider for other purposes, such as marketing.
   
   Each of these personal health records is very different from the “official” provider-based health record. Except for the records described in (4) above, it is not created by the caregiver or healthcare provider but by the patient herself, or by another organization that is often not related to the care process. The practitioner and provider communities have not always welcomed personal health records.