Personal Health Records in Primary Care

Challenges and opportunities

Personal health records are important in improving the quality and patient-centeredness of care and, are an essential step to create an effective medical home. However, the informatics need of the primary care setting creates challenges to integrate a PHR into daily practice and also generate new opportunities.

The concept of Personal Health Records (PHR) is not new, but in its electronic form it has come into prominence over the past few years. With the entry of Microsoft and Google into the PHR market, there has been much discussion on what PHRs are and what impact they could have on patient’s lives. So what exactly is a PHR? The exact definition of a PHR is still in flux. However, the Markle Foundation describes a PHR as ‘‘An electronic application through which individuals can access, manage and share their health information and that of others for whom they are authorised, in a private, secure and confidential environment.’’1

The PHR differs from an Electronic Health Record (EHR) at a very basic level: the healthcare consumer is the primary controller of the PHR; it can serve as a central data storage point, while the EHR is geared more towards the clinical provider. Some PHRs can assist patients in clinical decision support and provide links to pertinent health information. They have the potential to empower the patient to play a more active role in their healthcare. PHRs also have the potential to increase safety and quality of healthcare and to provide better integration with multiple data sources. Clearly, PHRs are something that patients desire.

Why they are necessary?

In the US, there is a myriad of EHR vendors and products with little interoperability. Data standards do exist, but the drive to utilise these standards on a wide scale is yet to be there.

What are the needs of Primary Care Physicians?

Primary Care Physicians are constantly faced with more and more demands. These range from quality initiatives and pay-for-performance measures to increasing patient volume, to an exponentially increasing knowledge base. In order to deliver high quality care, clinicians need to have rapid access to clinically relevant data and to coordinate data from numerous external sources such as outpatient laboratories and specialist consultations. Often, this data is not available during the clinical encounter, forcing the provider to expend more time and energy to obtain the necessary information.

What are the challenges that PHRs pose?

Perhaps one of the biggest challenges that the PHRs pose is in the realm of privacy. Patients often wonder that if they enter their personal data into a PHR, what measures are being used to ensure that only the proper individuals get access to that data and the information obtained will be used for the proper purpose. For example, if a PHR vendor depends on advertisement revenue to fund his product, sometimes the advertisements presented to the patient are based on data that the patient has entered. The next step could be that the vendor searches for patients who have hypertension and are on drug X. He then wants to present those users with an ad for drug Y, hoping to have those patients ask their clinical provider to switch them over to drug Y. Although direct-to-consumer advertising is common in the media, one could envision that this method could also be applied to more malicious intents.

Security is also a major concern for the data in PHRs. No computer system is completely invulnerable to attack by hacker intent on getting data. Whether the intrusion is for the hacker’s own “entertainment” or for worse, PHR vendors have to be ever vigilant and develop systems that far exceed the current standards of security for patients and providers to trust using these systems.

From the clinician’s perspective, the accuracy of the data is important for a PHR. Systems that obtain data from outside sources (e.g. laboratory data, prescriptions filled at the pharmacy, etc.) need to accurately interpret the incoming data. For example, if a patient has a prescription filled with a brand name drug and another subsequent refill that has the generic form of that same drug, the PHR system has to interpret that the two prescriptions as two instances of the same medication, rather than two separate drugs. Another example is in laboratory data: one laboratory may transmit haemoglobin A1C as “HgB A1C”, while the next lab could transmit it as “glycosylated haemoglobin” and a third transmits the data as “83036″ (the CPT-4 code for this test). The clinician can interpret these as the same measure, but computers often have trouble without specific coding of all potential synonyms. Lastly, the clinician may be mistrustful of accuracy of the information a patient enters, especially if it is sensitive data such as narcotic abuse or mental disorders. There is no way to find out if data has been edited or falsified on entry into the PHR.

Another area in which PHRs become challenging is when patients depend on proxies to enter or manage their data. This is especially true in paediatrics and geriatrics. Infants and young children depend on their parents to enter and manage PHR data on their behalf, whereas the elderly sometimes depend on their children. The system must have a way to verify the identity of the user and their relationship to the patient and to assess whether they should have access to this data. A much more difficult scenario is in the case of adolescents, especially in regards to sexual health, pregnancy and substance abuse. Many systems are still struggling to cope with the ability to give parents access to only certain parts of the record but not others.

Opportunities for the future:

One opportunity for PHRs to serve clinicians is in the setting of natural disasters. If a disaster destroys the clinicians record (either paper or electronic), an internet-based PHR may be the only way to resurrect lost data. Another situation similar to this is in emergency care, especially when the patient is travelling and is unable to obtain full record.

For primary care providers, PHRs have the potential for a life long record of health data. Current interoperability is still in its infancy but there have been some significant strides. Finally, PHRs can allow improved clinical research by making it easier for patients who otherwise would not have been eligible. Thus PHRs do pose a number of challenges in the primary care arena. However, the potential benefits far outweigh the risks.

Stephen J. Morgan
Consultant,
Clinical Informatics,
Partners HealthCare, USA

SGMS EMR