Peer support is the process by which people with similar conditions or health experiences (for example Wilson’s disease or other rare diseases) come together to support one another.1
It can involve a number of different listening and sharing activities, either one-on-one or in groups. Peer support may take the form of telephone calls, group meetings, conferences or webinars. These methods provide an opportunity for people to learn directly from each other’s experiences of dealing with a health condition, and can lead to improved quality of life.
Peer support can also include training to promote empowerment and self-determination. Crucially, this type of training – such as the Expert Patient Programme course in the UK – is delivered by people with the same health condition as those taking the course.2 This form of support can help people develop confidence in managing their condition, meet others with similar experiences and learn new skills, such as how to have more effective relationships with healthcare professionals.
Incorporating peer support into advocacy ensures that the patient experience is at the heart of activities. It can also add a greater level of legitimacy by having a wider range of experiences represented. Encouraging others to engage in peer support can help build a community of advocates who have a shared and comprehensive understanding of the challenges surrounding a given health condition.
Furthermore, peer support offers an opportunity for people to learn from each other’s advocacy experiences, enhancing the impact of future efforts. Ultimately, the expansion of peer support in advocacy can create a louder and more united voice when calling for change from policymakers.
If you are interested in developing your skills by learning from patient experts, consider exploring the following resources:
Eurordis Open Academy: https://openacademy.eurordis.org/all-courses/
Rare disease patient group training: https://www.rarebeacon.org/patient-group-training/training-programmes/
Accompagner, former les associations – Alliance Maladies Rares France (France only) : https://alliance-maladies-rares.org/nos-actions/accompagner-former-sensibiliser/
