Putting patients at the centre of clinical trial design

Posted on March 13th 2023

The PHA UK has partnered with a health technology company to help make it easier for patients to take part in clinical trials.

As a partner in the Aparito Patient Group Accelerator Programme, we are helping to identify new outcomes being measured by clinical trials, that are relevant to pulmonary hypertension.

Aparito digitises clinical trials through apps, video assessments and wearable devices, to ensure patients can take part without the need to travel to multiple appointments.

We are working with them, and clinical advisors from the University of Cambridge, to co-create outcome measures and digital biomarkers (data collected by patients themselves about disease management). Technical solutions, including a bespoke mobile phone app, will make it easier for this data to be collected in a ‘real-life’ environment.

A digitised PH-specific patient-reported outcome (PRO) has already been produced through the partnership, and a digital walk test tool is currently being refined and reviewed.

A panel of PHA UK members are helping to develop this work, following a large-scale survey we conducted last year to understand what patients want when it comes to the delivery of clinical trials.

Shaun Clayton, Director of Membership Support at the PHA UK, said: “We are excited to partner with Aparito to further assist the PH community, by co-developing new digital endpoints for clinical trials that could be collected in a real-life environment. We hope this will help PH patients participating in clinical trials to improve their trial experience and measure outcomes that better reflect how PH affects their day-to-day life.”

By developing technological solutions, new outcomes and digital biomarkers – designed with our PH community – we hope help shape clinical trials by putting patient needs at their centre.

Elisa Ferrer Mallol, Patient Advocacy Manager at Aparito said: “We are very excited to launch this new partnership with the PHA UK as part of the Accelerator Programme. This is an excellent opportunity to co-develop patient-driven solutions to support the PH patient community”.