A practical step-by-step approach for patient and public involvement in eHealth intervention research

Abstract

Background: The importance of patient and public involvement (PPI) in research is increasingly acknowledged. PPI is a collaborative approach in which research is conducted with or by end-users. It can enhance research quality and benefit the involved end-users. However, involving end-users in the non-linear and often interdisciplinary process of eHealth development can be challenging. While many resources on PPI exist, a functional and practical overview tailored to eHealth research is lacking. This paper presents a step-by-step approach to support PPI implementation in eHealth intervention research. Methods: Three (ongoing) eHealth projects, each targeting a different population and applying different forms of PPI, informed the approach development. It was iteratively refined based on insights gained from these projects and feedback from other researchers and end-users involved in one of the projects. Results: A six-step approach was developed, each step accompanied by reflective questions to support preparation and evaluation. The steps are: (1) Where in the eHealth evaluation cycle is your research project positioned?; (2) Why do you want to use PPI?; (3) Who is your target population?; (4) How are you going to achieve your aims?; (5) What considerations and conditions need to be taken into account to facilitate PPI?; (6) How did the PPI process unfold? Each step includes recommendations, lessons learned, case examples, and relevant resources (e.g., literature, websites). Conclusion: The approach integrates literature with practical, field-based insights. We hope that the approach inspires and supports researchers in implementing meaningful PPI in research.