In a first article, we explained why different forms of knowledge need to be brought together in mental health. This raises another question: who actually takes part in this process?
Peer support worker, patient partner, expert patient, patient educator, patient researcher, service-user representative… The number of terms is growing. They reflect an important shift: people with lived experience are no longer seen only as recipients of care or support. They can also contribute to designing, improving and evaluating them.
These terms do not, however, refer to exactly the same roles. Their meaning can also vary between organisations and projects. The French National Authority for Health (HAS) itself notes that this terminology has not yet been fully standardised.
The peer support worker: supporting others through shared experience
Peer support is first and foremost based on a relationship between people who have been through comparable situations: mental health difficulties, chronic illness, disability, addiction, social hardship or another major life challenge.
A peer support worker draws on their experience to support another person, facilitate dialogue, foster hope or help identify resources. Their involvement may be informal, voluntary or professional.
It is not simply a matter of telling one's own story. Experience needs to have been reflected upon, put into perspective and adapted to the other person's situation. Lived experience then becomes a resource to draw on, rather than a model to be replicated.
The patient partner: co-designing with professionals
A patient partner works within a collaborative approach. They may contribute to developing a care plan, improving a service, creating tools, delivering training or taking part in institutional reflection.
Their contribution is not limited to giving an opinion once a project is complete. Genuine partnership means being involved early enough in discussions to have a real influence on decisions.
The patient partner brings the perspective of people with lived experience, while professionals contribute their clinical, technical and organisational expertise. The aim is not to replace one form of expertise with another, but to build together.
The expert patient: expertise developed over time
The term “expert patient” generally refers to a person who has developed in-depth knowledge of their condition, their care journey or the healthcare system. This knowledge may be strengthened through training, involvement in an association or regular participation in projects.
The term remains debated. Being a patient does not automatically make someone an expert, and no single person can represent everyone living with the same condition.
Expertise therefore remains situated: it is grounded in a particular experience, enriched by knowledge and, at times, by engaging with other people's journeys.
The patient educator: taking a full part in teaching and learning
A patient educator works with students or professionals. They may help define learning objectives, develop a teaching scenario, co-facilitate a session and contribute to its evaluation.
Their role should not be reduced to that of a guest speaker invited simply to evoke an emotional response. They genuinely become an educator when they take part in the educational process and their contribution is recognised as an integral part of the training.
The patient researcher or co-researcher: producing knowledge together
In participatory research, a person with lived experience may help formulate research questions, choose methods, collect or interpret data, and disseminate findings.
They are no longer merely a research subject or interview participant. They take part in producing knowledge.
Such collaboration does, however, require a clear framework: defined responsibilities, preparation, recognition of the work contributed, and a genuine opportunity to discuss scientific choices.
The peer mentor: making other possibilities visible
Peer mentoring has developed particularly in the fields of disability and self-determination. It is based on a person with lived experience sharing solutions they have developed to live more independently and make their own choices.
It is close to peer support, but places greater emphasis on widening the range of possibilities: showing through experience that other ways of acting or organising one's life can be considered.
The service-user representative: bringing a collective voice
A service-user representative has a different role again. They hold a mandate to defend the rights and collective interests of service users within formal bodies, such as a healthcare organisation's service-user committee.
They therefore do not speak solely from personal experience. They bring a collective voice, draw on feedback from others and act within a defined institutional framework.
Complementary roles
The same person may take on several of these roles over the course of their journey. A peer support worker may become an educator, take part in research or contribute to a project as a patient partner.
But these roles should not be conflated. Before any involvement, several questions are worth asking:
- Who is the activity intended for?
- What is its purpose?
- What contribution is genuinely expected from the person?
- Do they have genuine influence over the project?
- What support, recognition and remuneration are provided?
Clarifying these points protects the person with lived experience, the professionals involved and the quality of the project.
The Savoirs Croisés perspective
At Savoirs Croisés, the main issue is not to multiply labels. It is to create the conditions in which each form of knowledge can make a distinct contribution.
Lived experience does not automatically become knowledge that can be shared. It requires reflection, articulation and contextualisation. It reaches its full value when it meets professional practice, research and the realities on the ground.
Bridging different forms of knowledge together therefore begins by recognising their differences — and by not conflating the roles of the people who carry them.
Further reading
- French National Authority for Health (HAS) – Supporting and encouraging service-user engagement
- French National Authority for Health (HAS) – Patient experience and experiential knowledge
- French National Authority for Health (HAS) – Peer support in healthcare, social care and medico-social organisations