Patient partnerships in research and communication

This branch covers patients and advocates as partners in research and communication, organised by the practical concern: the case for partnership, representation, programme and document work, and particular settings and applications. It leaves patient and caregiver authorship, writing for patient readers, patient-facing documents, trial population representativeness and regulatory requirements for patient-experience evidence to neighbouring branches.

• Why patients are partners in research and its documents — lived experience, participation burdens, trust, community priorities, shared decisions and complementary expertise
• Who patient advocates are and where they already have a say — backgrounds, representation gaps, advocacy expertise, decision-making roles and the strength of the patient voice
• Organising patient involvement in a research programme — forms of participation, programme and trial levels, frameworks, operational arrangements and sustainable implementation
• Working with a patient advocate on a document — finding contributors, compensation, conflicts, consent, online trust, discussion and support for rare-disease expertise
• Patient publication steering committees — patient-led publication priorities, governance, membership, working documents and medical writing support
• Involving children and young people in paediatric research — rights, empowerment, informed participation, advisory groups and contributions across a study
• Patient engagement in the medical-device industry — adoption barriers, usability and acceptance, combination-product development and the writer’s contribution
• What patients organise for themselves online — support, shared knowledge and patient-initiated research
• What involving patients has changed in real programmes — examples of development programmes, treatment plans, visual materials and visual meeting records shaped by patients