Patient Partnership
Patient Partnership is an important part of European Reference Networks (ERNs). For this purpose, EURORDIS has developed a Patient-Partnership Hub and framework in collaboration with ERNs.
This page shows an overview of patient-partnership within ERN CRANIO, good practices and links to projects.
Patient partnership in the ERNs
Patient partnership in the ERNs can be defined as a mutual relationship between patients and health professionals, where input from people living with a rare disease or caring for someone with a rare disease routinely and formally informs the Networks’ collaborative activities and decision-making. Patient partnership implies considering health professionals and patients involved in the Networks as equal partners in all ERN activities and domains (e.g. Network planning and evaluation, healthcare, training, education, outreach and information, and clinical research).
The term ’framework’ refers to “the ideas, information and principles that form the structure of an organisation or plan” 1 . This framework for the ERNs has been developed with the ambition to guide people in planning for, conducting and evaluating patient partnership in the ERNs.
PATIENT PARTNERSHIP IN ERN CRANIO
ERN CRANIO has several examples of good patient partnership within our network.
The overarching goal of patient partnership in ERN CRANIO is to collaboratively improve healthcare and the lives of people living with a rare or complex condition, taking into consideration their needs and responding to them.
WITH MY FAMILY TO THE THEATRE
For patients with craniofacial conditions, parents play a crucial role. In the first years after birth, parents make decisions that are deeply impactful. There is a long-term relationship between patients, doctors, healthcare providers, and families.
This project shows a collaboration between surgeons, patients and their families. Hosted by ERN CRANIO member Hôpital Necker Enfants-Malades in Paris, France.
"What does family mean to you?"
PATIENT-CLINICIAN ENGAGEMENT
The patient-clinician engagement group has been active in ERN CRANIO since June 2023. It brings together experts from all the different fields within ERN CRANIO, and includes patient representatives, surgeons and other healthcare providers.
This group actively engages in the ERN CRANIO network to ensure that the patient voice is heard in every aspect of the network's activities.
FACE ME
The main goal of project Face Me is to look at the mutual understanding between care professionals and patients/caretakers, by working with two artists who approached the project’s main question in an innovative and artistic way.
"How can we as doctors and healthcare providers be an even better guide for our patients, by seeing every aspect of their lives, and not just the physical part?
And by showing more of ourselves as human beings."
VIDEO DEVELOPMENT
ERN CRANIO continuously develops explanatory videos for healthcare providers, patients, families and researchers.
Every video that targets the patient and family audience, is developed in collaboration with clinical experts from the field as well as experience experts such as patient representatives. This way, we hope to inform the target audience with clinically correct information, but also informing the right points in an understandable manner.
Our latest example is our video about genetics & inheritance and genetics & craniosynostosis.