Reporting the involvement of patients and caregivers in identifying and designing healthcare interventions: the IDEAS framework

Background and Objective: Patient and caregiver involvement can optimize the relevance and uptake of research. However, there is little guidance on approaches for reporting the involvement of patients and caregivers in the identification and design of health care interventions. This study aims to develop a reporting framework for involving patients and caregivers in identifying and designing health care interventions to improve transparency in the approaches used. 

Methods: Electronic literature databases were extensively searched for guidelines, frameworks, reviews, and primary studies that reported patient and caregiver involvement in interventions; studies identified up to April 2024 were identified. A comprehensive list of reporting items was inductively developed. The IDEntifying And designing healthcare interventionS (IDEAS) framework was piloted with a diverse range of primary studies that reported patient and caregiver involvement in interventions. 

Results: Nineteen secondary studies (eg, guidelines, frameworks, and reviews) and 41 primary studies were used to develop the reporting items for the IDEAS framework. The IDEAS framework includes 14 reporting items that cover five domains: purpose (ie, role of patients or caregivers, type and scope of interventions, criteria considered eg, acceptability, feasibility); theory or framework used; population (ie, inclusion criteria, identification and selection, and characteristics); mode of involvement (ie, process of involvement, frequency, duration, and reimbursement); and output and impact. Each reporting item includes a descriptor and examples. 

Conclusion: The IDEAS framework can help ensure transparency in describing the process of reporting patients and caregivers in identifying and designing health care interventions. Ultimately, this may support the design of interventions that address the needs, preferences and priorities of patients and caregivers. 

Plain Language Summary: Patient and caregiver involvement in identifying and designing health care interventions can help improve acceptability, uptake, and impact of interventions. However, there is little guidance that addresses the reporting of the involvement of patients and caregivers in developing health care interventions. We carried out a detailed search for guidelines, frameworks, and primary studies to develop the reporting of the involvement of patients and caregivers in IDEentifying And designing healthcare interventionS (IDEAS) framework. The IDEAS framework consists of 14 reporting items that cover five domains: the purpose of involvement, the theory or framework used, the population of patients and caregivers who were involved, mode of involvement (ie, process of involvement), and output and impact. The IDEAS framework can be used to describe the involvement of patients and caregivers in identifying and designing health care interventions.