Engaging Patients and Other Stakeholders in “Designing for Dissemination” of Record Linkage Methods and Tools

 

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Abstract

Background Novel record linkage (RL) methods have the potential to enhance clinical informatics by integrating patient data from multiple sources—including electronic health records, insurance claims, and digital health devices—to inform patient-centered care. Engaging patients and other stakeholders in the use of RL methods in patient-centered outcomes research (PCOR) is a key step in ensuring RL methods are viewed as acceptable, appropriate, and useful. The University of Colorado Record Linkage (CURL) platform empowers the use of RL in PCOR.

Objectives This study aimed to describe the process of engaging patients and other stakeholders in the design of an RL dissemination package to support the use of RL methods in PCOR.

Methods Customer discovery, value proposition design, and user experience methods were used to iteratively develop an RL dissemination package that includes animated explainer videos for patients and an RL research planning workbook for researchers. Patients and other stakeholders (researchers, data managers, and regulatory officials) were engaged in the RL dissemination package design.

Results Patient partners emphasized the importance of conveying how RL methods may benefit patients and the rules researchers must follow to protect the privacy and security of patient data. Other stakeholders described accuracy, flexibility, efficiency, and data security compared with other available RL solutions. Dissemination package communication products reflect the value propositions identified by key stakeholders. As prioritized by patients, the animated explainer videos emphasize the data privacy and security processes and procedures employed when performing research using RL. The RL workbook addresses researchers' and data managers' needs to iteratively design RL projects and provides accompanying resources to alleviate leadership and regulatory officials' concerns about data regulation compliance.

Conclusion Dissemination products to promote adoption and use of CURL include materials to facilitate patient engagement in RL research and investigator step-by-step decision-making materials about the integration of RL methods in PCOR.

Protection of Human and Animal Subjects

The study was performed in compliance with the U.S. Title 45 Code of Federal Regulations Part 46 and was reviewed by Colorado Multiple Institutional Review Board.

Authors' Contributions

J.E.R. led the drafting of this manuscript as well as conducting or otherwise supporting all stakeholder engagement and design methods and analysis. T.C.O. was the principal investigator on the funding award that supported this work; he provided technical expertise on the integration of all RL content in the dissemination package as well as coplanning and facilitating stakeholder engagement efforts including the RL workshop and town hall. C.V. provided project management for stakeholder engagement activities. B.M. led the planning, implementation, and analysis of user-centered design think aloud usability interviews, contributed to the finalization of the CURL Workbook, and participated in the drafting of this manuscript. K.Y. supported the qualitative analysis of customer discovery interviews as well as cofacilitated think aloud usability interviews and participated in the analysis and integrations insights from these sessions. R.K. served as the patient partner on the design team and contributed to all stakeholder engagement and design efforts. B.K. directed all stakeholder engagement activities and the integration of findings into the design process, as well as writing on this manuscript.

Publication History

Received: 23 September 2022

Accepted: 01 June 2023

Accepted Manuscript online:
05 June 2023

Article published online:
23 August 2023

© 2023. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

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