The power of the patient effect on health research
Lead researchers: Professor Andrew Murphy and Martha Killilea, NUI Galway
Patients and the public can play important roles in participating in and shaping health research. However, we need more of them, as well as clinicians and academics, to be aware of how they can get involved, and the difference it can make when there is Public, Patient and Carer Involvement in research (PPI).
At NUI Galway, the HRB Primary Care Clinical Trials Network Ireland and PPI Ignite Network worked with CÚRAM (an SFI Centre for Research in Medical Devices) and the Galway Film Festival to commission and screen a documentary about three patients who got involved in research. The HRB supported the project.
- Patients and members of the public advised on and were involved in the documentary project from the start
- The documentary, The Patient Effect, was produced by Ishka Films and directed by Mia Mullarkey, and showed the power of including public and patient voices in research. It told the stories of Sophia Ryan, who was born prematurely at 25 weeks, Cameron Keighron who has Type 1 diabetes, and Margaret Devaney, who has arthritis. All three helped to further health research
- The Patient Effect was premiered at An Palás Cinema, Galway, to 150 attendees and has been shown at numerous scientific conferences, public events and film festivals internationally
- It is now used as part of medical, nursing and health sciences education at NUI Galway.
Professor Andrew Murphy, Director of Primary Care Clinical Trials Network Ireland, a HRB research network to enhance primary care and outcomes, says:
"As a Network, we want to involve patients and the public in clinical trials and research, not only taking part but being involved in the governance and design of studies and advising on how they want the findings to be reported accessibly. But to widen the PPI contributors involved, we need to raise more awareness among patients, clinicians and academics about the impact of PPI, and a documentary is an effective way of doing that.”
Martha Killilea, Programme Manager of the PPI Ignite Network @ NUI Galway, says:
“As well as the tangible output of the documentary, this project has built an enormous sense of achievement and pride among the patients and researchers who were involved in advising or appearing in the film. It has also helped put PPI more on the map among colleagues in academia whose research can benefit from it from the early stages.”
Watch the trailer for The Patient Effect. To access the full film, please email firstname.lastname@example.org
'The power of the patient effect on health research' is part of a wider collection of success stories across four themes from this year's annual Health Research in Action. Download the full publication.