NHS England - Transformation Directorate

Using electronic patient-reported outcome measures (PROMs) to improve patient outcomes

PROMs are often time-consuming to complete and interpret. They are also often:

  • paper-based
  • collected sporadically

Situation

In 2017, an audit was conducted in the rheumatology department at the Royal Berkshire Foundation Trust. It revealed that less than 50% of patients completed the paper-based PROMs given to them in clinic.

A study found that a PROM questionnaire took 8.5 minutes to complete. This took up most of the patient’s time in the clinic. As a result, there was little appetite from the patient to complete the questionnaire and the clinician to request it.

After the audit, it was proposed that patients complete an electronic version of the disease-specific PROM before their next appointment.

Aspiration

The Trust wanted to increase the number of completed PROMS.

Collecting data directly from a patient supports shared decision-making and provides a view of the holistic care needed.

Collecting patient-generated data before they attend the rheumatology clinic:

  • saves patients' time in clinic
  • increases the number of completed PROMS
  • provides richer data about a patient’s condition that is not normally captured
  • maximises the benefit of the clinical interaction
  • reduces unnecessary visits if patients report they are well before their appointment

Solution and impact

The team considered several different solutions including postal forms and using tablets to complete PROMs in the waiting area were considered. However, these were not progressed due to concerns around cost and not helping save patients’ time.

The solution was to digitise the disease-specific PROMs.

The trust-wide appointment system, provided by DrDoctor, creates a unique PROM link and sends it out to patients in advance of an appointment.

The patient can then complete the PROM from the comfort of their own home. This enables the patient-generated data to be integrated into the electronic patient record (EPR) system, Cerner Millennium.

Currently, results can be viewed within the EPR system as a PDF document. However, the team want to integrate results directly into a patient’s EPR.

Remotely collecting PROMs every 6 months has:

  • enabled a better patient experience
  • reduced the number appointments for patients who are well, where clinical value is low
  • increased capacity to see patients who report their condition is getting worse

Functionality

  • Patients receive a text message with their appointment and a unique link to complete a PROM.
  • If patients choose to opt out of receiving text messages, they are sent an email instead.
  • Clinicians log into the EPR system as usual. No extra login credentials are required to view responses.

The Trust is collecting rheumatology data using 12 different forms, including:

  • the health assessment questionnaire disability index (known as HAQ-DI)
  • Bath ankylosing spondylitis disease activity index (known as BASDAI)
  • Bath ankylosing spondylitis functional index (known as BASFI)
  • Bath ankylosing spondylitis patient global score (known as BAS-G)
  • arthritis and spinal pain

Capabilities

There are a number of PROM templates available to capture patient data. This means clinicians can support patients with axial spondyloarthritis, psoriatic arthritis and rheumatoid arthritis.

Patients and their clinicians can agree on the frequency and type of PROM. Using technology to collect PROMs means patients:

  • who are well can be seen once a year, instead of every 6 months
  • who are most in need of support can be prioritised
  • feel involved in their care
  • recognise that data collection is an important part of routine care

Scope

The service can be used:

  • to support patients to feel empowered to make decisions about their care when at home
  • to remotely monitor disease control to support decisions around medication escalation and de-escalation
  • to support patients to access care when they need it most, for example, during a flare-up
  • to reduce the number of appointments for patients who are in disease remission
  • to reduce health-related traffic and environmental impact

Key learning points

  • Educating patients about the remote monitoring service is essential.
  • Getting clinicians onboard to interact with the data is key.
  • Effective remote monitoring can drive clinical remission.
  • Remote data collection at scale can support group-level data and inform national audits, like the National Early Inflammatory Arthritis Audit.
  • Appointments have been extended to up to 2 years for patients in clinical remission.
  • Data collection is an important part of routine care.
  • Trust between patients and clinicians to use data for the benefit of care is important.
  • A diverse workforce, for example administrators, can also review incoming data.

Key figures

  • 9,300 forms were sent to patients in 2021. 4,083 responses were received, this is a response rate of 44%.
  • 250 hours of clinical time were saved.
  • Over 90% of clinicians and patients rated the ePROMs application as ‘good’ or ‘very good’.

Find out more

Improving Care and Capacity Through Capturing and Recording Patient Reported Outcomes with Digital Solutions in Spondyloarthritis case study on American College of Rheumatology website

British Society of Rheumatology annual review best practice (PDF, 163KB. This document may not be accessible to assistive technology.)

Key contact

Antoni Chan, Consultant Rheumatologist and Physician, Royal Berkshire NHS Foundation Trust

antoni.chan@nhs.net

Andrew Hubbard, Project Delivery and EPR Manager, Royal Berkshire NHS Foundation Trust

andrew.hubbard@royalberkshire.nhs.uk

Kiran Pudhota, IM&T Project Manager, Royal Berkshire NHS Foundation Trust

kiran.pudhota@royalberkshire.nhs.uk

Will Turner, Senior Success Associate, DrDoctor

will.turner@drdoctor.co.uk