Work package 12

Initiatives to involve stakeholders and disseminate findings

P4O2 was set up to help the general society by preventing development of lung disease at an early stage and its progression towards severe disease. Therefore, the involvement of the general society and patients is of great importance. Furthermore, it is a multi-disciplinary project, with many different stakeholders (a.o. people at risk for developing lung disease, research institutes, societies, private partners [health insurance, pharma, technology, other] that need to collaborate. Optimal communication between the different stakeholders requires a communication plan.

The aim of this work package is to initiate multiple initiatives to involve the different stakeholders in P4O2.

A cohort participation board will be set up to involve the general society and patients. Participants of the PRIL cohort do not have lung disease at the time of enrolling in the study, but may develop a lung disease over the 5 year follow up, and therefore are considered to be representatives of both the general society and lung patients in the Netherlands. Face-to-face meetings with the researchers will be organized and online surveys will be sent. Input of the participants will be of great value to the researchers, and will be used to shape the studies before the project will enroll the first patient, but also when the project is ongoing.

A newsletter will be sent every 6 months to keep participants and collaborators updated on the project. Occasionally a press release can be sent to the media via the NRS to reach the general public and professionals in the field.     

At the end of the project, the knowledge will be disseminated and discussed at symposia.

A one-day symposium for professionals (including medical specialists, medical, artificial intelligence and big data researchers, GPs, nurses, technicians, government officials, collaborators, etc) will be organized. There will be presentations and discussion groups to discuss clinical recommendations and future research plans. At the end of this symposium for professionals the participants are able to:

1. Describe populations at risk for developing lung disease in the Netherlands
2. Define phenotypes of patients at risk for developing lung diseases
3. Compare novel models of lung research
4. Describe new insights into mechanisms of lung damage and repair
5. Define biomarkers for early lung damage
6. Discuss the use of big-data to generate lifestyle and medication advice for early lung disease
7. Define clinical recommendations for the identification and treatment of people with early lung damage
8. Describe future research plans

Another one-day symposium will be organized for participants, patients and the general public to present the findings and to discuss future research. We will organize presentations, panel discussions, meet-the-expert sessions where participants of the symposium can ask their questions in smaller groups, etc. The goals of the symposium for participants, patients and the general public are for them to:

1. Recognize new risk factors and populations at risk for developing lung disease
2. Understand the basics of findings from P4O2 on lung damage and repair
3. Understand interventions they can apply themselves to prevent lung disease
4. Discuss their ideas on the findings of P4O2 and future research with experts in the field

The main deliverable of this work package is a strong and active network of participants, researchers, collaborators and the general public, to make use of different visions and to empower the effect that the study will have on the goal to fundamentally improve quality of life, perspectives and societal participation of patients with chronic lung diseases by 2030.