Getting Personal

For most people, personal health information has been primarily managed by the institutions where they receive care and the insurers that manage their benefits. Many patients are unaware that a complete record of all their personal health information cannot be found in any single location, and that these multiple medical records are an incomplete story of their personal health history.

However, with secure accessibility of information through the Internet and the conversion of paper medical records to electronic records, personal health information is starting to be more actively managed by individuals. The personal health record (PHR) is a key element in the complete patient medical record and allows consumers to play a more active role in their healthcare.

Building the foundation

The successful adoption of PHRs is dependant on building a solid foundation for standards, as well as the crucial task of turning paper records into electronic records.

With the national focus on healthcare information technology through the formation of the Office of the National Coordinator of Health Information Technology in 2004, the emphasis on integration and interoperability of health information data has been elevated. Goal 3 of the ONC strategic framework is to personalize care through the adoption of PHRs. Work has continued at this level through the Consumer Empowerment Workgroup.

In addition, over the last several years, there has been a renewed focus on the electronic medical record (EMR) to eliminate paper and share data. This is the most crucial requirement for any kind of electronic record sharing.

Current state of the PHR

Although there was a time when money deposits and withdrawals had to be made inside a person's bank, it is hard for some of us to remember the last time we saw the inside of our bank. Now we can do it all from the comfort of home and use our computers to pay bills, check balances and, most importantly, consolidate financial records into a personal financial record.

Managing PHRs is heading down the same path, but it is much more complex. Currently, an individual's medical record information is controlled and stored at related hospitals or clinics, much like financial records were in the 1980s and 1990s. The person has access to the data, but it is likely on paper. In addition, the data is more complex and does not have clearly defined standards.

Two types of PHRs have emerged Standalone PHRs

Over the last few years, there have been introductions of both standalone PHRs and PHRs which have been associated with one institution to be used by patients and their families. Much like the early financial personal records, they are cumbersome to use. They are handy for getting consolidated information but only for those who are diligent enough to manually keep records up to date. And because there is no integration, they are easy to implement and support.

PHRs integrated with an EMR are emerging. These types of records are tied directly to one institution and hospital information system. This is very beneficial because health information associated with that institution is integrated and shared with the PHR. Other helpful services such as appointment scheduling, physician messaging and prescription refills capabilities have been included. However, to date, they have been limited to integration within one institution. Communities using the same hospital information system are now investigating the idea of using a common PHR.

The future — integrating PHRs and EMRs

The PHR approach is right on target with how we need to assume responsibility for our own healthcare information and overall management. Integrating PHRs with the medical record information from more than one institution will need to follow the same path as the integration of financial data for an individual's personal financial information. However, there are several major challenges:

The EMR is a key foundational element to support PHRs. Overall, the healthcare industry is far behind on the investment and adoption of technology. The cost of EMR systems is high for already financially stretched healthcare institutions. Only a small percentage of healthcare providers have implemented EMRs, but a large number have started down that path. The bottom-line is that EMRs will have a long timeline.

The banking industry already had electronic records for its major transactions as electronic banking and ATMs emerged. Healthcare data is much more complex. Standards are in place for lab and drug information as well as diagnoses and insurance data, but other key clinical documentation standards are only slowly being developed and adopted. Standards for data integration or downloading to a Quicken-like PHR product have not been developed.

Because the data about a patient is not only confidential but also potentially critical for delivery of care, exact patient identification is critical. Medical records departments in hospitals and clinics spend a significant amount of time and effort to make sure this happens properly. Using the banking analogy, we all have ATM cards which carry personal information about us. The security is something separate and in our heads — the PIN.

Despite these challenges, the future is looking bright for PHRs. National attention is now focused on healthcare technology, investments are being made in EMRs and, importantly, consumers are more driven than ever to take control of their health records. PHRs will become a common practice in our not-so-distant future.