Using a national electronic platform to collect patient-reported outcome measures (PROMs)

PROMs are vital to help improve care, monitor patients’ progress and encourage shared decision making.

Before the COVID-19 pandemic, axial spondyloarthritis (AS) and rheumatoid arthritis (RA) patients visiting rheumatology at Lancashire and South Cumbria NHS Foundation Trust were asked to complete paper questionnaires.

Situation

Appointments moved online and over the telephone during the pandemic so PROMs could no longer be collected to inform clinical decisions.

The Trust could not capture how AS patients responded to treatment. It also could not perform physical joint examination to calculate a disease activity score (DAS28) in RA patients.

Aspiration

The Trust wanted to collect PROMs during remote consultations and outside of scheduled clinic appointments.

Solution

In 2020, in response to the challenges clinicians faced, the British Society for Rheumatology (BSR) developed an electronic platform called ePROMs. The platform collects PROMs for all patients with rheumatological conditions across the UK.

Clinicians explained the role of the platform to patients as they attended appointments.

Patients were enrolled onto the platform using an email address.

The frequency and type of PROM was agreed with the patient.

Benefits of the ePROMs platform include:

• empowering patients by enabling them to input their disease activity
• encouraging shared decision making
• flexibility on which PROMs to collect for each patient and how often
• site-specific information can be downloaded for audit and evaluation

Impact

The platform supports staff to:

• remotely monitor patients
• collate information before the next appointment as PROMs can be reviewed proactively to inform clinical management
• make better use of clinic appointments

The platform also:

• supports patients to complete PROMs outside of appointments
• gives patients more time to consider their responses

Functionality

PROMS available through the platform include:

• musculoskeletal health questionnaire
• DAS28
• wellbeing (patient health questionnaire-2 and generalised anxiety disorder-2)
• health assessment questionnaire
• work questionnaire
• Bath ankylosing spondylitis disease activity index (also known as BASDAI)
• juvenile idiopathic arthritis

Existing users of the National Early Inflammatory Arthritis Audit website use their username to access the platform.

Capabilities

• The platform provides detailed summaries of responses, which can be downloaded as a PDF and saved to the patient electronic care record.
• Results over time are shown as graphics.
• The platform is free and available for all rheumatology departments to use.

Scope

• The platform has the potential to support patient-initiated follow-up for stable rheumatology patients.
• It can include additional PROMs to widen the scope of patient groups that could benefit from the platform.
• For RA, the platform supports patients to complete a DAS28.

Key learning points

• It’s important to recognise potential health inequalities, as the PROMs are only available in English.
• Service users have to have an email address to register.
• Start with a patient group who are used to completing PROMs.
• Work with the multidisciplinary team to engage clinical staff and decide how to best use the platform.
• Involve patients in mapping and redesigning the patient pathway to identify where the PROMs platform can add value to patient care.
• Educate patients on the benefits of the PROMS platform.
• Patients really appreciate the better use of clinic time to discuss what really matters to them.

Key quotes

“As most of our appointments went online or to telephone during the pandemic, sending our electronic PROMs made perfect sense. It also complements the NHS Long Term Plan to digitise.”

Jane Brazendale, Physiotherapist, Minerva Health Centre

“When we were asking questions to patients over the phone, you can unintentionally be quite leading. When patients are answering questions online, not only is it more time efficient but it’s probably more accurate.”

Carole Greenall, Physiotherapist, Minerva Health Centre

“BSR commissioned this platform to meet an unmet need and help services monitor their patients as they transitioned to remote appointments at the start of the pandemic. This was particularly important at the time, as there was no national system in place to facilitate this significant change in practice, but remains relevant now with the NHS Long Term Plan and other national initiatives to improve patient care.”

Ali Rivett, Chief Executive, British Society for Rheumatology

“Being able to complete the form before my appointment, gives more time for a more informative consultation. It’s easier doing it on the app, it only takes a few minutes and I prefer it to the paper copy.”

Robert, Patient

Find out more

Minerva Health ePROMS case study

Key contact

Dr Elizabeth Macphie, AMD (physical health), Integrated Musculoskeletal Clinical Lead, Consultant Rheumatologist and Honorary Senior Lecturer, Lancashire and South Cumbria NHS Foundation Trust

elizabeth.macphie@lscft.nhs.uk

British Society for Rheumatology

eproms@rheumatology.org.uk

Martin Cripps, Head of Technical Development, Net Solving

martin.cripps@netsolving.com

Paul Cripps, Managing Director, Net Solving

paul.cripps@netsolving.com