A practical step-by-step approach for patient and public involvement in eHealth intervention research: Lessons learned from three case projects

TL;DR

This paper provides a six-step guide to help researchers involve patients and the public in eHealth studies, using lessons from three real projects.

Contribution

A practical, six-step framework for implementing patient and public involvement in eHealth research, supported by case examples and reflective tools.

Findings

A six-step approach was developed to guide patient and public involvement in eHealth research.

The framework includes reflective questions, recommendations, and case examples from three eHealth projects.

A supporting worksheet was created to help researchers apply the approach effectively.

Abstract

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.

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.

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).

The approach integrates literature with practical, field-based insights. We hope that the approach inspires and supports researchers in implementing meaningful PPI in research.

•We developed a practical approach to guide end-user involvement in eHealth research•Six-step approach including reflective questions, recommendations and case examples•Developed via an iterative process with input from researchers and end-users•Supporting worksheet helps researchers apply the approach with relevant resources•Practical tool to support and inspire meaningful patient and public involvement

We developed a practical approach to guide end-user involvement in eHealth research

Six-step approach including reflective questions, recommendations and case examples

Developed via an iterative process with input from researchers and end-users

Supporting worksheet helps researchers apply the approach with relevant resources

Practical tool to support and inspire meaningful patient and public involvement

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