$$ - An introduction to personal health records

Introduction

Having first been discussed in academic papers in the late nineteen seventies, the concept of patient managed health records has enjoyed somewhat of a resurgence in recent times. In the space of a year, the National E-Health Transition Authority (NEHTA) has commenced engagement on their proposed “Individual Electronic Health Record” system, Microsoft and Google have drawn back the curtains on their long-awaited Personal Health Records (PHRs) solutions, and a Facebook-like PHR was lauded as one of the key ideas to emerge from the 2020 Summit, its interim report proposing: “[Government] create a ‘Healthbook’ (like Facebook) for Australians to take greater ownership of their health information and electronically share it with people they trust — for example their doctor, nurse or family members. Users could control their health ‘friends’ and their level of access, share data as desired, and ask for real time advice on health issues...”

PHR solutions are designed to allow patients to compile a combination of clinician-generated documents, and supplement these with their own recordings and observations. Allergies, current and past medications, problems and diagnoses, family and social history, immunisations, implanted devices, screening results, key physiological measurements, pathology results, radiology reports, referrals, discharge summaries and care plans can all be recorded in a patient’s PHR, and subsequently shared with trusted third parties.

Personal Health Record Options

According to myPHR, a US website established by the American Health Information Management Association (AHIMA) and devoted to the dissemination of information about Personal Health Records, there are over 100 PHRs available for patients in the US to choose from. While several of these would be equally suited for use outside of the US, a count of the number of PHRs on the global market would yield a far greater range of options.

While this explosion in interest bodes well for the long term prospects of PHRs as a concept, it also increases the complexity for patients looking to select a PHR solution, and more significantly, for healthcare organisations and existing clinical software developers looking to integrate with such solutions.

Having seemingly learnt from the experiences of the clinician-centric software industry — where the retrofitting of standards to entrenched solutions remains a “work in progress” — there has been an early acknowledgement by the Health IT community that the successful creation and adoption of technical PHR standards will be crucial to the widespread acceptance of PHRs by existing clinician-centric software vendors, and indirectly, by consumers and clinicians.

Internationally, Health IT standards body, Health Level 7 (HL7), has commenced work on draft PHR standards, and US-centric Continuity of Care Record (CCR) and Continuity of Care Document (CCD) standards are being utilised abroad by some notable PHR vendors, however it is unclear at this time what impact these developments will have in the Australian context.

The vast majority of PHR solutions fit into one or more of the following categories:

Paper

While much of the current attention on Personal Health Records is on electronic solutions, it should be noted that the management of health information by patients is not a new concept. Indeed, paper-based PHRs have existed in various structured and ad hoc forms for decades, and remain the dominant PHR format to this day.

Paper-based PHRs have low barriers to entry, are easy to access and update, are relatively easy to copy (by photocopier), and are relatively easy to transport (by fax or post). They are, however, susceptible to loss or damage, may not be accessible on short notice, and do not allow the data contained within to be intelligently processed by computer systems for the purposes of decision support or aggregated data analysis.

Devices

The emergence of portable flash memory storage devices ushered in a myriad of device-based PHR solutions. Some exist as thumb drives dedicated to the purpose, while others have been integrated into personal belongings such as watches and jewellery. Regardless of the physical format, such devices usually contain an application or structured document used to store the patient’s health record.

In many ways, these devices can be thought of as a modern day equivalent of the “medical alert” bracelet. They do, however, have the additional benefit of being able to store a comprehensive health record on the device itself, negating the need for the treating clinician to phone a service to retrieve the pre-recorded health information.

Unfortunately, the usefulness of such devices is limited by the IT infrastructure present at the site of service — whether it be a general practice, emergency ward, ambulance, private home, or public space. Further, it is conceivable that such devices may become infected with spyware, viruses, or other malicious software. While these risks could be mitigated using appropriate virus scanning software, the author believes that in the long term, such PHR solutions are not something that IT literate clinicians and healthcare organisations are likely to actively support.

Smart phones

As the vast majority of Australians now own and routinely carry a mobile phone, these devices have emerged as a potential platform on which to both store and access PHRs. In fact the technical sophistication, screen size, and storage capacity of modern mobile phones have already facilitated an explosion in the availability of health related mobile phone applications for consumers, many of which are positioned squarely as PHRs.

Unlike device-based PHR solutions, modern smart phones can allow a PHR — stored either on the phone or on a website accessible from the phone — to be accessed without the need for additional computing hardware.

Websites

Of the myriad of PHR solutions available, the vast majority utilise web portals that allow the user to log in and record health related information in a purportedly secure environment.

Microsoft and Google have entered the space in recent times, and while both of their service offerings carry “beta” stickers and may therefore evolve over time, presently they share similar feature sets, are shrouded in similar promotional rhetoric, and are both being offered to healthcare consumers at no cost.

The entry of these two IT giants into the PHR market is likely to reshape the fledgling online PHR landscape rapidly, however it should be noted that while each company is clearly on a mission for both market and mind share, neither are attempting to monopolise the way in which data is entered into their PHR storage environments. Indeed, both Microsoft and Google are actively courting major healthcare facilities, clinical software developers, and medical device manufacturers, and have released Application Programming Interfaces (APIs) to encourage these parties to build interfaces to their respective products.

Conclusion

Personal Health Records have existed in paper form for many decades. While modern technology has the potential to change the way that patients interact with their PHRs, the motivation for maintaining such records remains the same.

According to Health IT commentators, what is likely to change however, is the adoption of PHR by increasing numbers of healthcare consumers. In a recent post on his Health IT Blog, Dr David More concluded that, “It seems to me virtually inevitable that over the next few years having a personal health record — independent of your doctor but having some input from them often — will become totally mainstream and as common as using electronic banking, especially for those with chronic health problems they need to manage.”

If such uptake eventuates, it follows that patients will increasingly expect that their clinicians review and contribute to their PHR as a matter of course, an expectation that is likely to have a direct impact on the way healthcare providers interact with their own clinical software.

Data standards that allow patients to easily migrate their PHR from one vendor to another will be important, as will the maintenance of open APIs that allow authorised healthcare providers to use their own clinical software to access, review, and input information into their patient’s PHRs.

The entry of Microsoft and Google into the fragmented PHR space is likely to force a rapid consolidation and realignment in the market, a positive outcome that is likely to ensure service continuity and minimise complexity for patients, clinicians and Health IT software developers alike.

Posted in Australian eHealth

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