We live in a world flooded with technology and interactivity, where our opinion is parsed and polled on virtually everything.

Yet traditionally healthcare is probably the only field globally that fails to ask its market what they want. While scientists, clinicians, technology developers, and regulators play critical roles in researching and developing new medicines, devices and procedures, the patient voice and perspective is often absent.

Healthcare is probably the only field globally that fails to ask its market what they want.

In the last decade however, the patient role in driving improved research and healthcare has evolved rapidly. Patients and their representative organisations have been supporting innovations in the lab, clinic, and regulatory approval among others, creating models and building infrastructure that are bringing fresh and critically important knowledge to the table. Patient advocates are thus taking on the role of a “critical friend” to other stakeholders in healthcare.

 

Redefining patients' role

 

IPPOSI - the Irish Platform for Patient Organisations, Science & Industry - has been working for more than 15 years to highlight how the patient community are redefining patient roles in Ireland and internationally, through partnerships with scientists, industry and state agencies and by finding new ways to help patients drive breakthroughs in understanding and care.

This is chiefly made possible by the commitment of our patient members who are profoundly motivated to improve their conditions and quality of life. With IPPOSI’s help, these patients make a supreme effort to educate themselves about the medicines development process, about R&D and clinical trials, about regulation, reimbursement and health technology assessment.

This has helped Irish patients to make tangible, visible contributions to the Irish health system, whether in the area of rare diseases, in the development of new health policies, taking part in regulatory committees, or driving patient input into reimbursement assessments.

 

Patients are keen to drive change

 

In 2017 IPPOSI took the significant step of establishing the world’s first national Patient Education Programme in Health Innovation. At its core, the concept of patient education recognises the critical role patients can and must play in their care, while seeking to harness their energy and willingness to step up and drive positive change. But while the potential of patients is understood, resources do not match this recognition.

The objective of the IPPOSI Patient Education Programme is to drive more patient-centric innovation and delivery to patients. It is clear that the future of health innovation will be more collaborative, involving new types of relationships where there is real interest in including the very people for whom health technologies are developed, and where patient involvement is not perceived as too costly, too time-consuming, or too confusing.

IPPOSI needs the help of visionary institutions and companies who understand the value of educating patients and are prepared to back this up with tangible commitments that will enable IPPOSI to grow our education programme and continue to be a pioneer of patient involvement in Ireland, Europe, and the world.

It is time for the wider healthcare community to step up.

To find out more about the IPPOSI Patient Education Programme, you can watch this three-minute video.