The PCD Day Family Support Group attended the European Lung Foundation Patient Networking Day on September 15th 2018 in Paris, which was part of the wider European Respiratory Society 2018 Congress.
The Patient Networking Day was focused on highlighting the different ways that patients can ensure their voices are heard when it comes to formulating and conducting medical research, as well as managing their day to day condition. The day was a fantastic opportunity to highlight how the PCD Family Support group brings together patients and medical professionals to ensure patient voices are heard, as well as learning from other charities and organisations about how they do this.
The key note address of the day was from Annie Descoteaux from the Centre for Excellence for Partnership with Patients and the Public, University of Montreal, Canada. This talk provided fantastic insight into the ‘Patients as Educators’ programme at the University of Montreal whereby students going through medical training collaborated with patients during various classes and seminars in order to ensure that these students understood how to maintain a ‘patient centric’ approach to medicine. It shed light on the importance of giving the patient a voice within the medical decision making process to ensure that doctors understand how their decisions impact the patients day to day life.
The key note address was followed by a ‘poster presentation’ session where representatives from each patient group presented their poster and talked about the different ways their organisations ensure the patients voices are heard by the medical community. This was a great opportunity to highlight the success of the PCD AGM and Medical Group meetings.
In the afternoon, there was an opportunity to meet other charities and learn the ways that they empower patients to be actively involved in their medical care and decision making process. We met with individuals from the Global Allergy and Asthma Patient Platform (GAAPP), and Asthma Society of Ireland. It was a great opportunity to see how the GAAPP had developed a patient charter that was used to mobilize national governments, health care providers, policymakers, and lung health industry professionals to address the unmet needs and burdens of asthma and work together to deliver meaningful improvements in care. Furthermore, it was interesting to see how the Asthma Society of Ireland had developed materials to help patients monitor their illness and feel empowered to proactively engage with their doctor and help shape their treatment.