On the 9 and 10 October, the ELF team attended the 5th annual meeting of the 3TR project in Gothenburg, Sweden.
Living with a chronic disease can negatively impact a person’s quality of life and some people remain unresponsive to treatment. The 3TR project compares the factors that affect treatment response across 7 immune-mediated, inflammatory and allergic diseases, including asthma and chronic obstructive pulmonary disease (COPD). Its aim is to improve how people living with these conditions respond to therapy.
On the 9 and 10 October, the ELF team attended the 5th annual meeting of the EU-funded 3TR project. Every year the meeting provides an opportunity to reflect on the progress of the project and hold important discussions for ways we can continue to tackle the conditions explored as part of the 3TR project.
Patient involvement is a major part of the project, and it was great to be involved in discussions to better align future research with patients’ perspectives and real-life experiences.
ELF and the European Federation of Allergy and Airway Diseases Patients Associations (EFA) set up the 3TR Respiratory Patient Advisory Group (PAG), made up of over 30 people with lung conditions. The group play an advisory role in the project and are currently working alongside Susanne Vijverberg and Stefania Principe to advise on the Asthma Biologics Cohort (ABC) study.
Elisa Jones, a member of the ELF Patient Input team, gave a short presentation on the value of patient involvement, which included perspectives from patients and researchers on the impact this has had on the project.
“Patient involvement is absolutely essential in any research as they are the ones directly affected and they know their condition best. In the 3TR ABC study patient input has helped shape the guidance around some of the key tests – I hope this means the project will be able to enhance its reach. I’d like to think that patient input has helped move the ABC study forward and that this research will help patients in the future.” – Helen Parks, ELF Council member and representative of the 3TR PAG.
“The regular interactions with the 3TR patient group are crucial in order to align the 3TR ABC project with the lived experiences of patients.” – Susanne Vijverberg, ERS Officer and 3TR ABC study co-ordinator.
As the 3TR study is looking at potential similarities across different disease areas, ELF Director, Pippa Powell, set up the 3TR cross-disease Patient Advisory Committee (PAC) to support the project. Members of the 3TR PAC travelled to Gothenburg to take part in the meeting and a lively round-table discussion on the second day. Chaired by Pippa Powell, the round table session discussed Patient Reported Outcome Measure (PROM) definitions with other experts from the 3TR project.
Theo Schilpzand, Dutch respiratory patient representative suggested that PROMs provide a more complete picture of how effective a treatment is.
“Patient Reported Outcome Measures are important. If we only look at the clinical aspects [of a treatment] then we are missing something.” – Theo Schilpzand.
Healthcare professionals and researchers were engaged in the discussions and the perspectives of patients were well-received, with researcher Sven-Eric concluding:
“A good doctor treats the symptoms, but the best doctor treats the patient.”
Theo Schilpzand hopes that by involving patients, the outcomes from 3TR will improve the quality of life for people living with the 7 conditions explored:
“Results are not for a chest of drawers, laying below in the dust. Results are for people having day-to-day struggles. Results are for healthcare professionals, to help these people as much as they can. It is great that the [3TR] project is paying good attention to stakeholders, such as patients and that is encouraging, as the results from this project may influence healthcare for new generations to come.”
If you are interested in getting involved in the 3TR project, please get in touch.
