New ethical standards for research: no more tokenism
One of the highlights of this year’s General Assembly of Eurocarers’ Members was the adoption of the Guidance for Ethical Involvement of Carers and Carer Organisations in Research. This position paper sets out what genuine research partnership with carer-led organisations looks like, and what it does not.
The principles Eurocarers now formally endorses are unambiguous. Carer-led organisations must be involved from the earliest stages of project design, as co-applicants or consortium partners, not merely consulted afterwards. Their time, staff capacity and overhead costs must be reflected in research budgets. And co-production with carer organisations should be the default, not the exception that requires special justification. When co-production from the outset is genuinely not possible, the guidance sets out concrete obligations: transparent compensation arrangements, fair payment rates and prompt reimbursement. This goes beyond fairness. Research that is budgeted, planned and governed with carer organisations from the start produces better outcomes and proves to be good science.
Eurocarers calls on research institutions, EU funding bodies and project consortia across Europe to adopt these standards in their working practices. Carer-led organisations bring expertise (from lived experience and from years of front-line work) that no other partner can replicate. That expertise deserves to be treated accordingly.
