Notes from the academic paper: Putting patients in control ? Personal Health Records

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

 

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