My personal health record: a patient journey

A personal health record (PHR) is a digital tool enabling individuals to manage and maintain their own healthcare, recording their own data, communicating with care services and accessing records. One patient shares their experience of how PHRs have impacted on their care and how there is still significant room for improvement.

The RCP Health Informatics Unit (HIU) recently launched an innovative patient-led report, commissioned by NHS England, looking at the ways in which people currently use PHRs and their aspirations for use in the future.

At the heart of a personal health record (PHR) is a patient who is hoping the PHR will help them with their condition. If the PHR is not designed with the patient's needs in mind then it is destined to fail. As highlighted in the user insights report, patients, in particular those with long-term conditions who are expected to self-manage, need to be motivated to use a PHR and this is best achieved when the PHR is user-friendly, well-supported by the health professional and IT teams, and contains features which the patients benefit from.

While no two patients are the same and each may find different features of a PHR beneficial, there are common themes:  

  • enabling easier communication with care teams
  • recording symptoms
  • reviewing results and record.

Supplying patients with information about their condition better equips them to self-manage effectively and also facilitates healthcare and social care teams to provide better care for their patients.

The service user's journey

I am a 29-year-old female with a 10-year history of Crohn's disease. I started using a PHR in 2012 at the recommendation of my consultant in order to track disease activity, variations in my symptoms and to help liaise with the team responsible for my care.

Initially, I was excited to be able to access my medical record and care team in a new way but certain poorly-designed features of the web portal eventually led to me feeling disengaged with the PHR altogether. I felt that I was wasting my time entering data that was neither viewed nor utilised by either myself or the team in charge of my care.

The health journal function was inadequate as it overwrote information and did not present my data in a way that was useful or understandable. In effect, I was recording information for no purpose.

Rather than give up hope, I used the data I had gathered that should have gone into the PHR and instead created a spreadsheet that turned my information into an easy-to-interpret graph. I then approached the IT lead for the PHR and showed him the benefit of being able to transform raw data about symptoms into a visual representation, highlighting trends over time and comparing against concurrent medications.

I was encouraged by the fact that the IT lead and clinical team were so enthused and saw huge potential in my proposals. We were all able to see the enormous benefits for both patients and clinicians and how it could be used to encourage people to use the PHR.

Although these changes have not yet been put in place, I am optimistic about the PHR’s future potential and the wider engagement for both health and social care teams and patients that I’m confident will result from such improvements.

Further information

Download a copy of the user insights report or visit the HIU webpages for more information about PHRs.

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