The two day workshop including patients, carers, clinicians, industry, and scientists, encouraged open conversations among people working with and living with sight-loss
ORBITAL ITN (Ocular Research By Integrated Training And Learning Innovation Training Network) recently took part in an intensive two-day training seminar at Instituto Superior Técnico Lisboa (IST), Portugal.
The ‘Patient as the Teacher’ workshop consisted of one day of interactive lectures and meetings, followed by a day with patients, carers, clinicians, industry representatives, and scientists at all stages of their careers. The purpose of the event, held in the World Café format, was to encourage open and honest conversations among various people working with and living with sight-loss.
Improving quality of life
The ORBITAL network, coordinated by Waterford Institute of Technology (WIT), is an EU-funded Marie Sklodowska-Curie Innovation Training Network, training 15 early stage researchers (ESRs) across Europe to develop drug delivery technologies that can help treat posterior segment diseases of the eye, such as age-related macular degeneration and diabetic retinopathy. In so doing, ORBITAL aims to improve the quality of life and clinical outcomes for patients with these conditions.
The ‘Patient as the Teacher’ event coordinated and planned by Prof Ana Paula Serro (IST), Dr Helena Prior Filipe (The Instituto de Retina de Lisboa), and ESRs Nadia Toffoletto (IST), Marco Brugnera (Universidad Complutense de Madrid), and Felipe Gonzalez (Nanovector), with assistance from ORBITAL Project Manager Tess Ames and Project Coordinator Dr Laurence Fitzhenry (WIT), was the next step in the ESR’s training programme.
Meeting with members of the sight-loss community
On the first day, the ESRs gathered for a full day of workshops and discussions around communicating science to non-scientific audiences. Day two saw the ESRs come together with approximately 50 members of the sight-loss community, with patients, clinicians or carers accounting for over 40% of attendees. The opening session was chaired by the Portuguese Secretary of State for the Inclusion of People with Disabilities, Dr Ana Sofia Antunes, and the President of Instituto Superior Técnico, Prof Rogério Colaço.
"The ESRs have engaged heavily in the science of their work over the past week, training in the lab, learning about ocular modelling, and attending scientific keynotes, while discussing and sharing their ideas with each other. But a key focus for ORBITAL has always been how these researchers engage in the softer skills of scientific research - how we can better learn from people living with conditions that impact on vision, and how we can better share preclinical research to the people it impacts the most," explained Project Coordinator Laurence Fitzhenry, WIT.
Structured and guided conversations allowed participants to address questions such as who is a part of the vision impairment and sight-loss community, and who else should to be included to create effective representation of the needs of this community. Participants were challenged to talk in small groups and share experiences, which gave patients the opportunity to learn more about the efforts that are being made to develop new, safer and more effective forms of treatment, while also discussing the parts of vision impairment or sight-loss that impact them most.
Disability is a problem of society
At the end of the workshop, a participant and member of Seeing Hands Association of the Blind, João Barrela, summarized his thoughts: “…we believe that disability… it’s a problem of society…It will take all of us together, those with blindness and sight-loss and those without, to consider who is responsible to make this world more welcome to us all.”
Representatives of several key associations also attended the event including ORBITAL Partner – Fighting Blindness, Portuguese Diabetes Association and Clinic (APDP), Retinopathy Association of Portugal (ARP), Portuguese Association for the Blind and Visually Impaired (ACAPO), and the European VitreoRetinal Society.
ORBITAL ITN is now working with a graphic recorder to create both a visual and audio representation of the workshop, to demonstrate how its outputs can be used to bridge the space between pre-clinical researchers and the public they serve.