Building Meaningful Patient Engagement in Research: Case Study From ADVANCE Clinical Data Research Network.
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ABSTRACT: Background
Strategies to engage patients to improve and enhance research and clinical care are increasingly being implemented in the United States, yet little is known about best practices for or the impacts of meaningful patient engagement.Objective
We describe and reflect on our patient stakeholder groups, engagement framework, experiences, and lessons learned in engaging patients in research, from generating proposal ideas to disseminating findings.Setting
The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network is the nation's largest clinical dataset on the safety net, with outpatient clinical data from 122 health systems (1109 clinics) in 23 states.Results
Patients stakeholders codeveloped the ADVANCE engagement framework and its implementation in partnership with network leaders. In phase I of ADVANCE, patients were involved with designing studies (input on primary outcome measures and methods) and usability testing (of the patient portal). In phase II, the network is prioritizing research training, dissemination opportunities, an "ambassador" program to pair more experienced patient stakeholders with those less experienced, and evaluation of engagement activities and impacts.Discussion
The ADVANCE framework for patient engagement has successfully involved a diverse group of patients in the design, implementation, and interpretation of comparative effectiveness research. Our experience and framework can be used by other organizations and research networks to support patient engagement activities.
SUBMITTER: Warren NT
PROVIDER: S-EPMC6136943 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundMedical information management for stroke patients is currently a very time-consuming endeavor. There are clear guidelines and procedures to treat patients having acute stroke, but it is not known how well these established practices are reflected in patient documentation.ObjectiveThis study compares a variety of documentation processes regarding stroke. The main objective of this work is to provide an overview of the most commonly occurring medical concepts in stroke documentation and identify overlaps between different documentation contexts to allow for the definition of a core data set that could be used in potential data interfaces.MethodsMedical source documentation forms from different documentation contexts, including hospitals, clinical trials, registries, and international standards, regarding stroke treatment followed by rehabilitation were digitized in the operational data model. Each source data element was semantically annotated using the Unified Medical Language System. The concept codes were analyzed for semantic overlaps. A concept was considered common if it appeared in at least two documentation contexts. The resulting common concepts were extended with implementation details, including data types and permissible values based on frequent patterns of source data elements, using an established expert-based and semiautomatic approach.ResultsIn total, 3287 data elements were identified, and 1051 of these emerged as unique medical concepts. The 100 most frequent medical concepts cover 9.51% (100/1051) of all concept occurrences in stroke documentation, and the 50 most frequent concepts cover 4.75% (50/1051). A list of common data elements was implemented in different standardized machine-readable formats on a public metadata repository for interoperable reuse.ConclusionsStandardization of medical documentation is a prerequisite for data exchange as well as the transferability and reuse of data. In the long run, standardization would save time and money and extend the capabilities for which such data could be used. In the context of this work, a lack of standardization was observed regarding current information management. Free-form text fields and intricate questions complicate automated data access and transfer between institutions. This work also revealed the potential of a unified documentation process as a core data set of the 50 most frequent common data elements, accounting for 34% of the documentation in medical information management. Such a data set offers a starting point for standardized and interoperable data collection in routine care, quality management, and clinical research.
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Project description:BackgroundA growing literature describes promising practices for patient-oriented research (POR) generally; however, those for systematic reviews are largely derived through the lens of a researcher. This rapid review sought to understand meaningful engagement in synthesis reviews from the patient partner (PP) perspective.DesignThe review team comprised PPs, librarians, SCPOR staff and academic faculty. We searched OVID MEDLINE and EMBASE, ProQuest Nursing and Allied Health, and core POR websites. Documents describing PP reflections on their involvement in synthesis reviews were included. Screening and data extraction were conducted by two independent reviewers. Thematic analysis was employed to identify themes in the data regarding PP perceptions of engagement in synthesis reviews.ResultsThe literature search yielded 1386 citations. Eight journal articles and one blog post were included. Seven studies focused on conducting systematic reviews on a particular health or patient-related topic to which PP involvement was an important part and two studies focused specifically on the experience of including PP in synthesis reviews. PPs engaged in the review process through a variety of mechanisms, levels and stages of the review process. Three major themes emerged from the data: (1) foster partnerships through team development, (2) provide opportunities for outcomes valued by PP and (3) strengthen the research endeavour.ConclusionFostering partnerships through team development is foundational for meaningful engagement in synthesis reviews. It requires sensitively balancing of various needs (eg overburdening with contributions). Meaningful involvement in reviews has both personal and research benefits.Patient involvementPatient partners were equal collaborators in all aspects of the review.
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