18 April 2021 marks the celebration of the 15th Patients’ Rights Day. Patients’ Rights Day is held every year to support the official recognition of this important day across Europe. This year, Patients’ Rights Day will be celebrated in a two day conference focusing on the role of civic society and patient advocacy groups for more resilient health care systems. With patient centricity at the core of the project’s activities, the EU PEARL consortium and partners support the marking of this important day.
What is EU-PEARL doing to support patients’ rights?
EU-PEARL is engaging patients in all aspects of the project to ensure that their views and experiences are meaningfully represented in the project. Last year, EU-PEARL inaugurated a Patient Advisory Group (PAG) and Expert Advisory Group (EAG) to reinforce and support the patient voice. The PAG consults on the design of the clinical trials platform, the Patient Engagement Platform, and other project work. EAG members act as ambassadors for patient engagement in their work streams.
But our commitment to patients does not stop there. EU-PEARL is entering a new phase of the project with the involvement of PAG members in shaping the Roadmap for the Patient Engagement Platform. To ensure that this meets patients’ real needs, the PAG and PAG coordinators are meeting with other EU-PEARL partners to identify synergies and needs across the project.
Lastly, we are committed to improving on the way we deliver on patient engagement. This is why we are developing an internal tool to ensure that we can measure if we are doing it right, and make improvements to the benefit of the patient community and other stakeholders. By tracking progress over time, our aim is to be accountable and continue to progress towards an ideal standard of patient engagement.
Patients’ Rights Day: ‘Nothing about us without us’