Driving change through Patient Advocacy
Patient advocacy is a broad concept that essentially describes a range of services for patients, survivors, and caregivers who are living with, or have lived with a disease. The ultimate aim of these services and efforts – provided by carers, or groups that develop policies that help patients, government groups that develop legislation to improve systems or processes, or patients themselves – is to represent the voice of those affected to ensure their needs are met within an oftentimes complex healthcare system.
Patient advocacy is also the main driver through which the EU-PFF strives to change PF care and treatment in the best interest of patients and carers. The Federation believes that this can only be achieved through collaboration with all relevant stakeholders in healthcare, research and industry at the centre of which should always be those affected – represented by well-trained patient advocates who are equipped to negotiate at eye-level on behalf of their communities.
To this end, the EU-PFF conducted a so-called Advocate Development Programme (ADP), designed and developed for EU-PFF members and IPF/PF advocates. This 10-month course aimed at empowering patients and developing their capacity to advocate more effectively on behalf of the patients in their community by understanding clinical research and development, mechanisms of accessing diagnostics and drugs, interaction with stakeholders like clinicians and industry, and the basics of evidence-based advocacy.
Along with educating patients, creating awareness of PF and collaborating with other stakeholders, patient advocacy and – whilst acknowledging and considering the heterogeneity of the PF patient community – strengthening the patient voice is one of the central pillars that carry the Federation’s mission and constitute its objectives as an umbrella organisation.
If you and your organisation want to join us and use your voice to better represent the needs and preferences of your patient community in your country, and if you want to unite forces to improve the lives of all those affected by PF in Europe and beyond, become a member of our federation.
Let’s drive change together.