Last Saturday, March 26, Técnico hosted a World Cafe event titled ”The patient as the teacher”. The event brought together patients, clinicians and researchers from around the world.
“It has been a very positive experience”, says Ana Paula Serro, professor at the Department of Chemical Engineering (DEQ) and responsible for the project in Portugal. “These events, which bring together researchers and patients, are rare. Sitting people with different perspectives at the same table, to exchange ideas and share experiences has been very enriching for everyone”, stresses the Técnico professor.
The event was organised by the ORBITAL (Ocular Research By Integrated Training and Learning) network, of which Técnico is a member. The opening session was chaired by the Secretary of State for the Inclusion of People with Disabilities, Dr. Ana Sofia Antunes, and the President of Instituto Superior Técnico, professor Rogério Colaço.
In total, the event brought together about 50 participants. 40% were patients or clinicians. “Representatives of several patient organisations asked us if this event would be held annually and showed great interest for these type of initiatives”, shares professor Ana Paula Serro.
The participants were challenged to talk in small groups and share experiences, which allowed to contact directly with patients with eye diseases and to debate the best ways to address and mitigate chronic eye diseases. Patients also had the opportunity to learn more about the efforts that are being made to develop new, safer and more effective forms of treatment.
According to professor Ana Paula Serro “the only obstacle we had was the language. The event was held in English as we had a large number of foreign researchers. Although we had previously informed that the event would be held in English, several participants had some difficulty in communicating in this language. However, with the help of some participants and some bilingual speeches, we managed the situation well”, recalls the Técnico professor. “We are planning a new meeting in the medium term, within the scope of another national project that is already running and which addresses a related topic – the treatment of diabetic eye disease -, but this time the event will be held in Portuguese”.
The team of researchers considers that this event was a unique opportunity to hear first-hand insights into patients’ problems and define new action strategies. The Técnico professor explains “during the months prior to the meeting, the junior researchers of the ORBITAL project attended training sessions to improve their communication skills”. “They participated in several sessions and workshops on topics such as communicate with empathy, how to use media effectively, or patient-centred learning.
Representatives of several associations also attended the event: Associação Protetora dos Diabéticos de Portugal (APDP), Associação de Retinopatia de Portugal (ARP), Associação dos Cegos e Amblíopes de Portugal (ACAPO) and Seeing Hand Association for the Blind.
The panel of participants included members of the European VitreoRetinal Society, and health care providers representing various healthcare institutions. “Edol and Pfizer Algeria accepted our invitation to participate in the event”, says professor Ana Paula Serro. The panel of participants also included members of the European VitreoRetinal Society, and health care providers representing various healthcare institutions. “Edol and Pfizer Algeria accepted our invitation to participate in the event”, says professor Ana Paula Serro. “We wanted to hear from everyone involved to decide the best course of action”, she adds.
The Orbital project brings together a multidisciplinary team of academic, clinical and industrial experts from Instituto Superior Técnico and 22 other partners from Europe, Canada and the United States, and aims to train researchers to PhD level, ensuring that they have a clear focus on patient needs such as the Age-Related Macular Degeneration, Glaucoma and Diabetic Eye Disease. These diseases are the leading causes of vision impairment, and it is estimated that they currently affect about 380 million people, a number that is expected to increase to 559 million in 2040 (47%).