Although no universally agreed definition of an electronic personal health record exists,4
it has been described as “an electronic application through which individuals can access, manage and share their health information . . . in a private, secure and confidential environment.”5
Models vary in the extent to which the content of the record and rights of access are controlled by the patient or the healthcare provider, the range of tools that accompany it, and their interactivity. Simpler models include patient generated health and lifestyle records that are stored and managed using personal computer or web applications, and passive access to provider held records through waiting room kiosks, the internet, or digital copy (such as on a CD or smart card).
However, personal health record systems are becoming increasingly complex (box 1). Some are integrated with providers' information systems to combine personal record keeping, access to current electronic health records, and a range of information and communications functions. For example, patients of the US managed care organisation Kaiser Permanente have access to HealthConnectOnline, which offers records of allergies, immunisations, future appointments, diagnoses, instructions from past visits, and laboratory results as well as allowing patients to book appointments, reorder prescriptions, and communicate with healthcare professionals by email (figure).
Example of portal for electronic personal health records from the US
Box 1 Potential functions of electronic personal health records
- Access to provider's electronic clinical record (summary or detailed)—eg history, drugs, test results
- Personal health organiser or diary—eg clinics, doctors, tests, dates, non-prescribed treatments, scanned documents
- Self management support—eg care plans, graphing of symptoms, passive biofeedback, tailored instructive or motivational feedback, decision aids, or reminders
- Secure patient-provider communication for booking appointments, reordering prescriptions, or seeking advice (eg patient-doctor email)
- Links to static or interactive information about illness, treatments, or self care
- Links to sources of support—eg patient organisations or virtual peer networks
- Capture of symptom or health behaviour data—by self report or objective monitoring through electronic devices (fixed or portable)
Complex online personal records are also being used in Europe. The LifeSensor product (www.us.lifesensor.com/lsn/content/e4529/index_usa.html
), which is available in Germany, Switzerland, Austria, and Bulgaria, allows patients to store and manage information about their current health status, medical history, results, images, and documents and also to authorise access for selected healthcare team members or caregivers to view, add, or update information, although the system is not directly linked to provider records. In the future, the European Union electronic health insurance card may enable patients to access their online personal health record.6
) is a secure online personal health organiser available to all patients in England. The system was initially launched in 2003 to store health notes generated by patients. However, its functions have since increased to include selection and booking of hospital appointments; storage and charting of health indicators such as blood pressure, peak flow, or weight; a calendar with the option to generate email reminders; a database of NHS contacts; and links to online health information. By the end of next year patients will be able to access their NHS Summary Care Record—a snapshot of the general practice record documenting allergies, adverse reactions, and drug treatment. Although HealthSpace will not provide access to detailed care records, clinicians can add data to the summary record with the patient's agreement. Other features under consideration include allowing patients to enter their needs or preferences, such as for wheelchair access or translators; greater use of text and email alerting; and enhanced tools for patients with chronic disease. The link with NHSDirect Online (www.nhsdirect.nhs.uk
) also offers possibilities for integrating electronic consulting and education in the future. Although HealthSpace promises a national solution to electronic personal health records, it will be some time before its full potential is realised.
Compatible developments are taking place independently in several UK clinical settings. These have mainly focused on providing passive access to records, although systems with additional functionality and interactivity are beginning to emerge. While most have been driven by pioneering clinical enthusiasts, commercial providers are beginning to enter this market, offering opportunities to scale up these developments for wider delivery (box 2).
Box 2 Current UK experience with electronic personal health records
- Online access to the full electronic primary care record is being piloted in practices associated with a major system supplier. 7 Patients of some eligible practices also have access to online appointment booking, prescription reordering, and secure email. (www.emis-online.com/products/access/)
- Waiting room kiosks providing secure access to records and related patient information have been introduced in several general practices and are now available commercially (www.emis-online.com/products/health-information-portal/)
- Some practices have offered patients copies of their electronic record on CD or USB memory stick for several years8
- Smart cards are currently being marketed, on to which patients can upload their general practice record, for a fee, and view it using personal computing software (www.healthecard.co.uk)
- Access to record via mobile phone and BlackBerry smart phone is also being piloted9 (www.ehiprimarycare.com/news/item.cfm?ID=2148)
- Patient portals offering access to more specialised records, some with a range of additional features, exist or are being developed in several areas, including:
Patient-provider email and remote submission of symptoms to electronic health records are also being tested in both sectors