Patient Advisory Committee

Patients and the vision to advance more patient-centred, personalised treatment options are at the heart of the 3TR endeavour.

From the beginning, a Patient Advisory Committee (PAC) was established to ensure that the voices of people living with one of the seven diseases 3TR investigates are heard and integrated into the project’s research activities—within and across the different disease working groups.

The PAC is a diverse group consisting of people with chronic autoimmune, inflammatory bowel or respiratory diseases, alongside representatives of the medical association European Respiratory Society (ERS), as well as members of the patient organisations Lupus Europe, the European Lung Foundation (ELF), and the European Federation of Allergy Airways Diseases Patients’ Association (E.F.A.).

Together, they bring in a wide range of patient perspectives, helping researchers and clinicians understand and gain insights from their experience, thus serving as an essential advisory resource.

Advising the different working groups

Providing advice on the design of clinical research activities

Supporting communication to the broader public

Sharing results through patient networks and communities

Voices

Living with Autoimmune, Inflammatory and Allergic Diseases

“Quality of life is key! People living with a disease want to go back to normal life as much as possible. It is therefore important to include a quality-of-life measure that encompasses every aspect of life that is important to the individual.”
Zoe Ide, UK
Living with Rheumatoid Arthritis

“It is important to involve people living with a disease in research because we have a unique perspective and insight. This can be particularly relevant when thinking about the practicalities of clinical trials—for example, highlighting the burden on patients and whether the number of visits may lead to high dropout rates.”
Theo Schilpzand, the Netherlands
Living with severe Asthma

“Ultimately, I would like to see the right patients getting the right drug at the right time. The concept of a ‘Super-Responder’ is fascinating. If more targeted prescribing could be implemented, our quality of life will improve. I am certain that people living with diseases will be more than happy to contribute -- not just by donating samples, but by getting meaningfully involved in every phase of the project.”
Joan Jordan, Ireland
Living with Multiple Sclerosis

“Most patients on the committee are also members of a patient organisation. So, we see our role as sharing our personal experience of the disease and representing the wider views of our community. To this end, we are all conscious of the need to represent all members of our community, including people with different cultural, ethnic, and socioeconomic backgrounds. However, this is a challenge for patient organisations across Europe to ensure they involve those from ‘lesser heard’ communities.”
Francesca Marchiori, Italy
Living with Systemic Lupus Erythematosus

“Sometimes, we feel that the medical world could do better in engaging its own patients. After all, clinicians see patients every day. Why don’t they ask, ‘Have you ever thought of getting involved in research?’. This could be an opportunity for the 3TR Patient Advisory Committee to develop information materials to get more people involved.”
Bastien Corsat, France
Living with Crohn’s Disease

Spotlights

3TR places great emphasis on including the perspective of patients. Find out more about the project’s mission and benefits for patients in this Q&A with researcher Dr. David Gomez Matallanas from University College Dublin and patient advocate Joan Jordan.

Lupus is the result of a variety of causes and a disease with 1000 faces. To better understand the complexity of the autoimmune disease, Lupus Europe answers the 100 most popular questions in a FAQ.

Living with a lung disease can be a challenge in everyday life. The European Lung Foundation has compiled some tips and information on how to deal with the condition in different situations and daily life scenarios.

Living with MS can look very different for everyone. Therefore, the PROMS Initiative incorporates patients’ unique experiences and perspectives into research to improve the quality of care and outcomes for each individual patient.

Rheumatoid Arthritis is an autoimmune disease that affects about 18 million people worldwide. To gather key information for patients, the National Rheumatoid Arthritis Society has set up a resource hub with helpful articles, videos, tools and publications.

Research into inflammatory bowel diseases can benefit from the perspective of those affected. To engage patients more actively, the European Federation of Crohn's and Ulcerative Colitis Associations has launched a series of webinars, workshops and initiatives.