ISPOR 2022 – The continued rise of the patient reported outcome

By Bruce Hellman
Chief Patient Officer and Co-founder of uMotif


Thank you Vienna and thank you ISPOR!  It was great to be back again, seeing old friends and meeting new people to discuss the importance of Outcomes Research. After the Covid break there was a great deal to catch up on and talk about!

I had a number of exciting discussions with pharma, CROs, RWE vendors and data companies about how Real-World Evidence is playing an increasingly important role in Health Technology Assessments (HTAs), submissions for pricing and reimbursement of drugs, and how RWE can help build the case for new therapies.

A consistent theme was that the voice of the patient needs to be present, included and listened to more. What does this mean in practice? It means both capturing high quality Patient Reported Outcome, Experience, Satisfaction, Symptom, device and other data, while also giving patients an engaging experience so that they are happy to contribute their time and data.

This was my main takeaway from the conference – that we’re seeing an increasing importance, value and necessity of capturing, analyzing and reporting on Patient Reported Outcome (PRO) data.

But capturing this data can be difficult, particularly in real world and prospective settings. So how can we make this a reality? My strong belief is that industry must ensure patients are thought of first in the design and delivery of research. Solutions must be crafted that engage patients in their research and healthcare journey as active participants. Not just as subjects entering their data, without being recognised and thanked for their valuable contribution.

Having built uMotif over the last 10 years, with input from tens-of-thousands of patients, I’ve seen first-hand how able, willing and happy patients are to provide their Outcome Data.  We’ve experienced that capturing high quality data can be achieved remotely, using people’s own smartphones on a regular basis with high compliance of well over 90% in Real World settings.

Success today and in the future is based on true patient-first design, ensuring that both the researcher and the patient benefits. I’m looking forward to helping deliver this patient-centric and patient-first future and discussing this more at ISPOR conferences of the future.

I’ll also be at CNS Summit in Florida from 17 – 20 November to continue the conversation around true patient-centricity.