Patient participation in respiratory research – the GRIAC approach
Respiratory diseases are a major contributor to global mortality and morbidity. Numbers from the World Health Organisation show that diseases such as chronic obstructive pulmonary disease (COPD), respiratory infections (pneumonia, but also the current SARS-CoV-2 pandemic), and lung problems due to prematurity are in the top 10 of most common causes of death.

Respiratory diseases have a high societal and economic impact, due to the loss in quality of life, the loss in days of labor and the high health care costs. Patients with asthma or COPD often tell that their burden of disease is not seen by peers because they cannot socialise due to (severe) symptoms. They also keenly feel the stigma attached to coughing and giving up phlegm resulting in more social isolation, in addition to experiencing a sense of guilt and shame for those symptoms being associated with smoking and thus a self-inflicted disease. Therefore, patients with a respiratory disease often try to hide the burden and do not advocate effectively for lung health.

A multidisciplinary and multi-layered approach

To create awareness for the importance of lung health, to make sure that more research budget is allocated to respiratory diseases, and to better understand respiratory diseases, the stakeholders in this area need to work closely together. Patients, clinicians, researchers, and health care providers often speak different languages. The challenge is to have these groups communicating effectively. 

To address this challenge, GRIAC established a unique multi-layered approach with a close-knit collaboration between health care providers and fundamental and clinical researchers at its heart. They collaborate at different levels of the translational spectrum from fundamental biology to clinical studies, assisted by an active patient-advisory board. This patient board meets on a 3-monthly basis and advices researchers on their studies from the perspective of their experiences with a respiratory disease. Examples are: how to approach COPD patients for a study on stopping with inhaled corticosteroids and how to assess the burden of research bronchoscopies in children. In addition, they are advising numerous researchers about lay summaries in grant proposals. Patients are involved in an early – brainstorm – phase of research and participate in semi-annual retreats to discuss projects for instance on air pollution and respiratory health. 

Impact on patients

Patients that participated in the national PIAMA birth cohort, now young adults, have become active applicants in a consortium grant to the Dutch Lung Foundation led by a GRIAC researcher. The project was funded and now this group of patients is part of the research team implementing the project.

Many GRIAC researchers and patients from the advisory board were also involved in establishing the National Lung Research Roadmap. This program was organised by the Netherlands Respiratory Society to define the research topics of main importance to the Dutch respiratory field. This effort yielded unexpected topics like fatigue, particularly important to patients, but overlooked in the past by researchers and health care providers. 

Impact on researchers

The close collaboration between the three stakeholders in respiratory research and health care, i.e. patients, researchers, and health care providers has pushed GRIAC towards a leadership position in translational research in the respiratory domain. Many other centers try to emulate the patient participation approach of GRIAC to boost their research and patient care; local, national and international centers have contacted GRIAC leadership to copy the unique GRIAC set-up. The direct implementation of results from fundamental studies and patient studies back and forth with input from patients is truly unique in the world and has resulted among others in new innovative treatment options for severe emphysema (with one-way valves or coils) and bronchitis (vapor ablation) and in optimalisation of outcome assessments, such as the widely used COPD clinical symptoms questionnaire and the quality of life questionnaires in allergy and bronchopulmonary disease. 

The patient-inspired projects within GRIAC not only improve our understanding of respiratory diseases, but also give patients a voice which has resulted in recognition of their disease and beneficial changes in their daily lives.