How patients and informal caregivers can be trained to effectively contribute to improved quality of healthcare services: action research on the development of the Dutch Patient As a Person Academy

Objectives Patient and public involvement is regarded as vital in fostering high-quality care. While involvement has clear societal advantages, it is still widely viewed as tokenistic and surrounded by issues of representation. This study aims to understand how patients and informal caregivers can be trained to effectively contribute to improved quality of healthcare services. Design Using an action research approach, a 15-week training programme for patients and informal caregivers called the Patient As a Person Academy was developed, tested and evaluated in three development cycles. Evaluation methods varied per development cycle and included open-ended questionnaires (N=27) and semistructured interviews (N=35) as well as agile evaluation sessions of all 15 training sessions. Setting and participants We purposively sampled patients and informal caregivers who had prior experience in patient and public involvement. Patients and informal caregivers who participated as patient and partner educators in health professions education in the Netherlands could participate. Intervention Participants followed the Patient As a Person Academy, a 15-week training programme that aims to prepare patients and informal caregivers to become patient partners. Results Participants reported that the Patient As a Person Academy's focus on self-management skills, understanding healthcare professionals' perspectives and communication skills helped them to engage in meaningful dialogue with healthcare professionals as patient partners and made them more confident in their roles. However, tailoring towards individual participants' levels of acceptance of illness and reflexivity was needed. Participants reported that, next to the training programme, peer-to-peer coaching and guidance towards roles in quality improvement initiatives would be necessary to optimise their contributions. Conclusions Initiatives like the Patient As a Person Academy may alleviate the problems of tokenism in patient and public involvement. However, extensively preparing patients and informal caregivers raises issues around representation.