# Involving people with lived experiences in the study of a behavioral stress-recovery e-intervention for myocardial infarction patients younger than 55 with cardiac distress: a study protocol

## TL;DR

This study explores how involving people who have had heart attacks improves the design of an online stress recovery program for younger patients.

## Contribution

The study introduces a structured approach to involving patients in all phases of behavioral intervention research for cardiac distress.

## Key findings

- PRPs provide feedback on intervention materials and study procedures through online workshops.
- The study will analyze how PRP involvement influences decision-making and aligns with scientific and practical considerations.
- Findings will guide integrating patient input in behavioral intervention research.

## Abstract

Public and patient involvement and engagement (PPIE) is increasingly valued for improving the quality and relevance of health research. Patient research partners (PRPs) offer lived experience of a previous myocardial infarction and cardiac distress that can enhance study design and implementation. This protocol describes one out of four studies in a larger project aiming to adapt and evaluate a stress recovery intervention for adults (aged < 55) after myocardial infarction with cardiac distress.

The primary aim of this study is to explore PRPs’ perceived impact on the design, implementation, and evaluation of the internet-delivered behavioral stress recovery intervention Balance in Everyday Life (iBEL), and to describe the process of their involvement in research activities. This study employs a PPIE approach to systematically involve PRP: s throughout all phases of the research project.

Five to eight PRPs with lived experiences of a previous myocardial infarction and cardiac distress will participate in a series of structured online workshops across all phases of the project. They provide feedback on intervention materials and study procedures. Data are collected using impact logs, semi-structured interviews, and questionnaires, and will be analyzed using thematic analysis.

This study is expected to generate insights into how sustained PRP involvement can be integrated into behavioral intervention research. It will highlight how PRPs influence decision-making processes in real time, and how this aligns with scientific and practical considerations.

The present study provides insights into the perceived impact of PRPs on the design, implementation, and evaluation of the iBEL intervention, highlighting both effective aspects and challenges of patient involvement, and offering guidance for integrating PRP input in behavioral intervention research.

Not applicable. This study does not involve a clinical trial requiring registration.

The online version contains supplementary material available at 10.1186/s40900-025-00795-z.

Younger people who have had a heart attack (also known as a myocardial infarction) often experience emotional problems such as anxiety, fear of another heart event, or difficulties returning to work. These problems are sometimes referred to as cardiac distress. Although cardiac medical treatments (such as surgery and medication) have improved, many people who have had a heart attack struggle with such distress long after the event. This paper describes a part of a larger research project that aims to adapt and evaluate a stress recovery program that could help individuals who have experienced a heart attack before the age of 55 years and subsequently experience cardiac distress. A program that will be delivered online to make it more accessible. In the study described in this paper we focus on involving people from the target group, individuals under 55 who have had a heart attack, in the research process. These individuals are called Patient Research Partners (PRPs). They will join structured online workshops with researchers throughout the entire project. These workshops are dedicated to the research project and are distinct from traditional steering group activities, which are separate. Their task is to give feedback on the program, study materials, and how the studies are carried out. We want to understand how PRPs influence the project and what value their involvement brings. To do this, we will collect feedback in several ways, including interviews, surveys, and workshop notes. The findings will help us learn how to involve patients in ways that are more aligned with established principles of meaningful patient and public involvement and engagement, including early involvement (e.g., participation in protocol development, intervention design, and input regarding outcome measures), influence on study decisions, and ongoing collaboration throughout the research process, and how such involvement can improve the quality and practical relevance of healthcare programs.

The online version contains supplementary material available at 10.1186/s40900-025-00795-z.