a PHR was defined in the project specification as:
… a digital tool that helps people to maintain their health and manage their care. It may do this by enabling them to capture their own health and care data, to communicate with health and care services, and/or to have access to their care record.
The literature review found evidence of unmet needs. Patient expectations were not being met by PHRs; in particular limited content of the record was being made available to patients and there was an inability to bring together records from different care settings into one place.
Recommendations for further research:
Understand what patients require from PHRs – what information do they want to see and what do they want to use PHRs for, and why (ie gain or benefit)? This understanding needs to include people who do not currently use PHRs and the requirements of different groups (eg adults, older people, children, people who are ‘hard to reach’, those with sensory and other disabilities and those with mental health issues, etc). Any study needs to examine requirements in a person-centred way across care setting boundaries, rather than from the perspective of specific care providers.
The categories of services provided currently by PHRs:
- communicating with your care team through the PHR
- seeing your medication records and tools, to review them and remind you to take medication
- services to help you to plan and manage your own care
- information and support services.
In the systems that were connected to the care providers’ EHR (17/23), 76% showed a benefit in the use of the PHR. However in standalone PHRs, benefits were seen only in 50% of the studies (3/6)
Responses about PHR services indicate that they are at a relatively low level of maturity.
- Most of the PHRs are currently setting-specific (ie primary, hospital or social care), although some suppliers have aspirations for integrated implementation across more than one setting.
- PHRs mainly provide patients with a view of their records, rather than the ability to update or annotate them, let alone upload their own data.
- Linkage of PHRs to electronic health or care record systems was in some cases aspirational, particularly when compared with implementer responses about current linkage. Also, the links are generally unidirectional (from the electronic health or care record to the PHR, rather than vice versa).
- The main way in which users could communicate with their care teams was via email-type messaging rather than instant methods, such as video and instant messaging etc.
- While PHRs enable patients or citizens to view their medications, they are generally setting- specific, for example only their GP or hospital medication records. Patients are unable to interact electronically with their medication record, eg to point out errors or to remind themselves to take their medicines.
The main use of PHRs is currently access to blood test results. In patient online access to GP records, repeat prescriptions and appointment booking are also major uses. PHRs tend to be used before or after appointments, which indicates that preparation for and debriefing on consultations is important. These uses are quite limited and, in the case of blood results, are limited to specific patient groups. There is still little evidence about how PHRs are used, what they are used for and why.
Potential benefits for both patients (improved experience and outcomes) and organisations (time, effectiveness and cost savings) were identified in the survey responses, but the majority were aspirational and we were able to obtain little supporting evidence of objectively realised benefits. The literature review identified a number of studies that identified patient benefits, but these were largely qualitative, focusing on how patients felt about the PHRs, rather than any quantitative assessment of their impact on health outcomes (eg lifestyle improvements) derived from bias-free study designs.
Similarly, reports of disbenefits were mainly related to fears and anxieties, for example of increased burden on clinicians or patient confidentiality, with little supporting evidence.
The Markle Foundation’s definition of a PHR, as follows: ‘An Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it.’
Recognising that PHRs act as a means to enable better care and coordination, the table below summarises the types of capabilities that typical PHRs provide, and shows which of those elements are distinct from the Record Access capability.
The PHR utility is wide-ranging and offers potential solutions to age-old problems. For example, when consulting a GP, patients often have to recall parts of their medical history from memory (not always successfully), taking up valuable time in clinic. As noted in the table, part of the PHR’s function is to support patient-entered data. This can include subjective data such as symptom scores, qualitative descriptions of symptoms or medical problems. It may also be possible for patients to complete questionnaires and to write their history before arriving for a consultation. The current RCGP advice is that ‘health professionals should use this to supplement, not replace, their clinical assessment’.
Furthermore, through direct patient entry or via interoperable devices, patients’ self-monitoring data from telehealth devices could be added into their PHR. This could include blood pressure, peak flow, blood sugars and oxygen saturation measurements, and lifestyle information such as diet and exercise charts.
PHRs for complex/chronic care users
Our work suggests that PHR usage is most likely to take off amongst engaged groups of patients, committed to self-management. Those with complex, chronic conditions, often with more than one long term condition, are most likely to find a PHR useful and have the most to gain in the first instance.
Of those who did not believe a PHR would help them keep better track of their healthcare records, there was only one frequent user of existing online resources (4.8%) and 4 fairly regular users (19%), while the majority did not use these resources at all (76.2%). The clear implication is that exposure to existing online resources informs the desire to use a PHR.
As one patient we spoke to said, ‘Obtaining test results, clinical advice, repeat prescriptions, condition monitoring at home, the ability to correct mistakes, communicate with the clinical team are all aspects which make an individual’s life easier and it is these things which would encourage uptake. It also offers the most gain for clinicians too.’
In our survey of 172 people with long term conditions, 39% said they would find a PHR reassuring, and 28.4% claimed they would be fairly reassured; 23.3% said they would not be reassured at all, and 9.3% didn’t know.
Of those who said they would not be reassured, 65% were very concerned that information available on their record would be accessible to health professionals for whom it was not relevant, and almost all of them (92.3%) cited security and the risk of unauthorised record access as their major concern.
When asked whether they believed a PHR would to organise and keep track of their healthcare records better, they responded:
- 45.3% A lot
- 30.2% A little
- 12.8% Not at all
- 11.6% Don’t know
Many respondents who believed a PHR would help organise and keep track of records better were already frequent users of online resources: 25.6% confessed to being regular users and 53.8% said they were fairly regular. This group was more likely to be concerned with accuracy of the record (76.3%) rather than security (71.1%).
This group was more likely to be concerned with accuracy of the record (76.3%) rather than security (71.1%).
Of those who did not believe a PHR would help them keep better track of their healthcare records, there was only one frequent user of existing online resources (4.8%) and 4 fairly regular users (19%), while the majority did not use these resources at all (76.2%). The clear implication is that exposure to existing online resources informs the desire to use a PHR