As part of a week of events to celebrate International Clinical Trials Day, The Clinical Research Facility together with the Trinity Translational Medicine Institute hosted a half-day seminar. The focus of the Seminar was how to involve patients and their families in research. Opening the seminar Professor Martina Hennessy, Director of the CRF, pointed out the Seminar Programme starts out from the acknowledgement that clinical research leads to better patient care and that involving patients makes for better clinical research.
Prof. Martina Hennessy, Director of the Clinical Research Facility
The focus of the seminar was how to involve patients in research and a wide range of speakers spoke about how they successfully involved patients in their research. Sarah Bowman, Programme Director with the TCD PPI Ignite Programme spoke about what the universities are doing to support researchers in their endeavours to involve patients in research.
Professor Joe Barry and Jo-Hanna Ivers described how family members of people who had died from substance misuse were involved in the development of an index to properly record the circumstances of deaths from this cause.
Prof. Joe Barry
Professor Agnes Higgins spoke from the perspective of mental health research and highlighted the need for openness and humility in how researchers engage with patients and their families. She also warned the audience to expect unexpected revelations and insights that are only really brought to the surface from a close relationship with patients.
Dr Cliona Ni Cheallaigh spoke about her research into the social determinants of health and how easy it is for researchers to inadvertently overlook the people who are seldom heard. Reaching these people requires innovative and thoughtful approaches. Dr Mary Galvin shared her experiences of designing and developing technology to aid multimorbid patients and how the design process if followed properly, might hint at other approaches to involving patients.
After the coffee break, Dr Derick Mitchell explained IPPOSI’s approach to educating patients to participate and play a meaningful part in the research process. It is clear that Ireland is a leader when it comes to developing the skills and competencies of Irish patients to become involved in research.
Dr Derick Mitchell
Matthew McCann spoke to the group about the development of a mobile App (Access Earth), which aims to asset map the entire earth from the perspective of access and mobility for mobility impaired individuals. Access Earth has won a number of national and international awards and illustrated to the seminar how unique experience and perspective can lead to the development of a world-class product. Lastly, Grainne Shiell described the CRF’s very own HRB funded KEDS project, which is concerned with how hospital patients can sustain regular exercise in the community once they have left the care of the hospital. The project relies heavily on working with patients to understand the barriers to exercising in community-based facilities.
An interesting panel discussion ensued about the wide spectrum of research and how different types of research require different approaches. It was acknowledged that it might be difficult to engage patients about early stage scientific and pre-clinical work. However, the panel gave examples where patients and their families are interested in the basic science research and techniques and equipment used. Another conclusion from the discussion highlighted the need for basic educational resources for researchers and post-graduate courses that address patient and public involvement in research.