The “Safor Salut” cooperation program — a joint initiative by Campus Gandia of the Universitat Politècnica de València (UPV), FISABIO–Gandia Health Department, FISABIO–HACLE La Pedreraa, and the Safor Federation of Business Associations (FAES) — has organized its first Citizen Science workshop in collaboration with patient associations and individuals affected by fibromyalgia.
Chronic pain linked to fibromyalgia is a major global health challenge, profoundly impacting the daily lives of those affected and presenting ongoing difficulties for healthcare professionals.
As part of the initiatives developed by Safor Salut, efforts have focused on identifying unmet needs and key challenges to drive the creation of innovative projects in the health sector. This approach aims to tackle specific challenges that directly affect patients’ quality of life, fostering their early involvement in the identification, design, and development of new solutions.
Despite advances in technology and therapy, significant gaps persist in the diagnosis and treatment of fibromyalgia. This reality underscores the need to promote initiatives that enhance our understanding of the disease and its impact, with the aim of driving research and innovation projects focused on improving disease management and patients’ quality of life.
The event aimed to provide information on the Patient Journey Map, which is the path from the onset of the disease’s symptoms to diagnosis and throughout chronic pain treatment. Key areas for improvement were identified, offering valuable insights into patients’ experiences and needs throughout their journey.
The workshop was led by technical experts from Fisabio, Campus Gandia (UPV), and Faes, with active participation from the presidents of patient associations, patients, and professionals from four organizations: the Safor Fibromyalgia Association (AFISA), the Marina Alta Fibromyalgia and Chronic Fatigue Association (AFIMA), the Ribera Association of those Affected by Fibromyalgia and Chronic Fatigue (ADAFIR), and the La Costera Fibromyalgia Association (AFILACOS). Additionally, technical support was provided by the Open Science Unit of Fisabio.
Citizen Science Workshop Series
Citizen Science workshops are specifically focused on ideas in which citizens can actively contribute to science, whether through their intellectual effort, knowledge of the disease and the environment, or through their tools and resources.
A series of four workshops will be conducted, each exploring a unique perspective.
The first workshop focused on the needs and experiences of patient associations and individuals throughout their journey with the illness.
The second workshop will delve into the perspective of healthcare professionals regarding the diagnosis and treatment of chronic pain.
The third workshop will analyze the key insights gathered from the first two sessions.
The fourth and final workshop in the series will be a creative session focused on developing projects that address the needs identified in the previous workshops.
Throughout the process, the situation will be analyzed, fostering diverse perspectives and proposing various solutions. The goal is to encourage the development of collaborative research and innovation projects, bringing together researchers, healthcare professionals, university staff, companies, and other experts, with patient participation integrated from the outset.
New Ideas and Challenges
If you have a project idea and require a partner from the healthcare, university, or business sector to execute it, submit your idea to saforsalut.es/ideas-retos. We’ll assist you in finding suitable partners. Additionally, you can explore the ideas submitted by others and actively participate by contributing to their implementation.
SAFOR SALUT TEAM
Campus de Gandia (UPV): Pilar Sánchez | psanche@upv.es Isabel Fambuena | isfammue@upv.es
Fisabio: María Prada | maria.prada@fisabio.es, Amparo Arlandis | amparo.arlandis@fisabio.es, Amparo Estruch |amparo.estruch@fisabio.es
Empresas-FAES: Josep Miquel Juan | mjuan@cev.es Fina López | info@faesafor.com
