IPPOSI – giving patients the skills and confidence to shape research

Enabling more fruitful conversations about research to improve patient care and outcomes.

Graphic for theme 2
The problem

Because of their lived experience, patients have a huge amount of valuable information for improving care. But it may not be easy for them to communicate their insights to industry groups and researchers and influence more effective research.

The project The Irish Platform for Patient Organisations, Science & Industry (IPPOSI), works with patients, the healthcare industry and the academic research community to enable more fruitful conversations about research and improve patient care and outcomes. With support from the HRB, IPPOSI runs an 11-month Patient Education Programme every two years with modules about clinical trials, safety regulations for drugs/devices and how drugs are assessed for public funding with supplemental workshops on social media and communication skills, how advocacy campaigns work and more.

The outcomes
  • By the end of 2021, more than 60 people will have graduated from the IPPOSI Patient Education Programme in Health Innovation
  • Peer mentoring (where previous graduates of the programme help patients who are currently enrolled) has proved a major success
  • Because of the programme, patients have built networks with researchers from industry and academia, and are maintaining contact with other patients through WhatsApp groups
  • Patients report feeling more confident to participate in research, and inform campaigns about improving care.

Caroline Whelan, Education and Outreach Manager at IPPOSI, says:

“We have a rainbow of backgrounds in our patient groups, including people advocating from their kitchen table and people joining the online courses from their hospital beds. They have a lot to teach everyone, and through our Patient Education Programme we are helping them to develop the knowledge and skills to share their insights with people working in industry and academia as well as with politicians and policymakers.”

‘IPPOSI – giving patients the skills and confidence to shape research’ is part of a wider collection of success stories across four themes from this year's annual Health Research in ActionDownload the full publication