CC BY-NC-ND 4.0 · Appl Clin Inform 2022; 13(03): 641-646
DOI: 10.1055/s-0042-1750355
CIC 2021

Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support

Danny van Leeuwen
1   Health Hats, Arlington, Massachusetts, United States
Michael Mittelman
2   American Living Organ Donor Fund, Philadelphia, Pennsylvania, United States
Lacy Fabian
3   The MITRE Corporation, McLean, Virginia, United States
Edwin A. Lomotan
4   Agency for Healthcare Research and Quality, Rockville, Maryland, United States
› Author Affiliations
Funding This work was supported by the U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality, 75FCMC18D0047 and 75Q80119F80005.


Background Partnerships among patients, families, caregivers, and clinicians are critical to helping patients lead their best lives given their specific genetics, conditions, circumstances, and the environments in which they live, work, and play. These partnerships extend to the development of health information technology, including clinical decision support (CDS). Design of these technologies, however, often occurs without a profound understanding of the true needs, wants, and concerns of patients and family members. Patient perspective is important not only for patient-facing applications but for provider-facing applications, especially those intended to support shared decision-making.

Objectives Our objective is to describe models for effectively engaging patients and caregivers during CDS development and implementation and to inspire CDS developers to partner with patients and caregivers to improve the potential impact of CDS.

Methods This article serves as a case study of how two patient activists successfully implemented models for engaging patients and caregivers in a federal program designed to increase the uptake of research evidence into clinical practice through CDS. Models included virtual focus groups, social media, agile software development, and attention to privacy and cybersecurity.

Results Impact on the federal program has been substantial and has resulted in improved CDS training materials, new prototype CDS applications, prioritization of new functionality and features, and increased engagement of patient and caregiver communities in ongoing projects. Among these opportunities is a group of developers and patient activists dedicated and committed to exploring strategic and operational opportunities to codesign CDS applications.

Conclusion Codesign and implementation of CDS can occur as a partnership among developers, implementers, patients, cybersecurity and privacy activists, and caregivers. Several approaches are viable, and an iterative process is most promising. Additional work is needed to investigate scalability of the approaches explored by this case study and to identify measures of meaningful inclusion of patients/caregivers in CDS projects.

Protection of Human and Animal Subjects

This article references individual research projects as described on Each research project was performed in compliance with the U.S. Code of Federal Regulations 45 CFR 46 and reviewed by one or more Institutional Review Boards at the respective institution(s).

Publication History

Received: 14 December 2021

Accepted: 17 April 2022

Article published online:
29 June 2022

© 2022. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (

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