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Nothing for Me or About Me, Without Me: Codesign of Clinical Decision SupportFunding 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.
Keywordsclinical decision support - patient engagement - codesign - patient and caregiver partnerships - implementation - information security - privacy
Protection of Human and Animal Subjects
This article references individual research projects as described on https://cds.ahrq.gov. 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).
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. (https://creativecommons.org/licenses/by-nc-nd/4.0/)
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- 1 Boyarsky BJ, Werbel WA, Avery RK. et al. Immunogenicity of a single dose of SARS-CoV-2 Messenger RNA vaccine in solid organ transplant recipients. JAMA 2021; 325 (17) 1784-1786
- 2 McCullough M. COVID-19 vaccines don't protect most organ-transplant patients, study finds. The Philadelphia Inquirer. March 17, 2021. Accessed November 8, 2021 at: https://www.inquirer.com/health/coronavirus/covid-19-vaccination-may-be-ineffective-for-immunosupressed-patients-20210317.html
- 3 Agency for Healthcare Research and Quality. Patient-Centered Clinical Decision Support Learning Network. Patient-centered and patient-facing clinical decision support. Accessed November 2, 2021 at: https://pccds-ln.org/node/276
- 4 Campbell R. The five rights of clinical decision support: CDS tools helpful for meeting meaningful use. J AHIMA 2016; 84 (10) 42-47
- 5 Vaughn LM, Jacquez F. Participatory research methods—choice points in the research process. J Particip Res Meth 2020; 1 (01) DOI: 10.35844/001c.13244.
- 6 Lomotan EA, Meadows G, Michaels M, Michel JJ, Miller K. To Share is Human! Advancing evidence into practice through a national repository of interoperable clinical decision support. Appl Clin Inform 2020; 11 (01) 112-121
- 7 Agency for Healthcare Research and Quality. Patient-Centered Clinical Decision Support Learning Network. Accessed June 6, 2022 at: https://digital.ahrq.gov/ahrq-funded-projects/patient-centered-outcomes-research-clinical-decision-support-learning-network
- 8 Agency for Healthcare Research and Quality. Clinical Decision Support Innovation Collaborative. Accessed June 6, 2022 at: https://digital.ahrq.gov/ahrq-funded-projects/clinical-decision-support-innovation-collaborative-cdsic
- 9 The Patient Family Advisor (PFA) Network. The PFANetwork: improving healthcare together. Accessed November 8, 2021 at: https://pfanetwork.org
- 10 Van Leeuwen D. Managing Chronic Pain: Personal Goals, Pain Goals. Accessed November 8, 2021 at: https://youtu.be/PGWQU_tYXfc
- 11 Agency for Healthcare Research and Quality. Patient-Centered Outcomes Research Clinical Decision Support: Repository. Accessed November 2, 2021 at: https://cds.ahrq.gov/cdsconnect/repository
- 12 Patient-Centered Outcomes Research Institute. Public and Patient Engagement. Accessed November 8, 2021 at: https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement
- 13 Klann JG, Joss MAH, Embree K, Murphy SN. Data model harmonization for the All Of Us Research Program: transforming i2b2 data into the OMOP common data model. PLoS One 2019; 14 (02) e0212463
- 14 Grindell C, Tod A, Bec R. et al. Using creative co-design to develop a decision support tool for people with malignant pleural effusion. BMC Med Inform Decis Mak 2020; 20 (01) 179
- 15 Sutton RT, Pincock D, Baumgart DC, Sadowski DC, Fedorak RN, Kroeker KI. An overview of clinical decision support systems: benefits, risks, and strategies for success. NPJ Digit Med 2020; 3: 17
- 16 Agency for Healthcare Research and Quality. Patient-Centered Clinical Decision Support Learning Network. Trusted Use Frameworks Working Group (TFWG). Accessed November 2, 2021 at: https://pccds-ln.org/tfwg
- 17 Ash JS, Chase D, Baron S. et al. Clinical decision support for worker health: a five-site qualitative needs assessment in primary care settings. Appl Clin Inform 2020; 11 (04) 635-643
- 18 Orenstein EW, Muthu N, Weitkamp AO. et al. Towards a maturity model for clinical decision support operations. Appl Clin Inform 2019; 10 (05) 810-819