Patients' early engagement in research proposal development (PEER-PD): Patients guiding the proposal writing
JournalJournal of Comparative Effectiveness Research
PublisherFuture Medicine Ltd.
MetadataShow full item record
AbstractPatient engagement often starts after research funding is secured with little or no involvement of patients in the proposal development phase. This paper compares three levels of patient engagement and describes patients' early engagement in research proposal development process and its contemporary relevance to clinical and translational research. Authentic patient engagement is illustrated using an example of an ongoing pragmatic clinical trial. The paper also addresses key patient considerations and questions that have an impact on the proposal development. The final section presents strategies to overcome challenges to the patients' early engagement in research proposal development approach from the perspectives of both patients and researchers. Although the examples are from comparative effectiveness research, strategies discussed can be applied to all clinical and translational research.
SponsorsThis project was funded by the Agency for Healthcare Research and Quality (AHRQ) (grant number R24HS022135) and Patient-Centered Outcomes Research Institute (PCORI) (award number PCS-1403-12804).
Keywordclinical and translational research
comparative effectiveness research
Identifier to cite or link to this itemhttps://www.scopus.com/inward/record.uri?eid=2-s2.0-85064219468&doi=10.2217%2fcer-2018-0129&partnerID=40&md5=9bb36bf03e16131ee98ca5536f5c7f56; http://hdl.handle.net/10713/10710
Showing items related by title, author, creator and subject.
RE-CODE DCM (REsearch Objectives and Common Data Elements for Degenerative Cervical Myelopathy): A Consensus Process to Improve Research Efficiency in DCM, Through Establishment of a Standardized Dataset for Clinical Research and the Definition of the ResDavies, B.M.; Khan, D.Z.; Mowforth, O.D. (SAGE Publications Ltd, 2019)Study Design: Mixed-method consensus process. Objectives: Degenerative cervical myelopathy (DCM) is a common and disabling condition that arises when mechanical stress damages the spinal cord as a result of degenerative changes in the surrounding spinal structures. RECODE-DCM (REsearch Objectives and Common Data Elements for Degenerative Cervical Myelopathy) aims to improve efficient use of health care resources within the field of DCM by using a multi-stakeholder partnership to define the DCM research priorities, to develop a minimum dataset for DCM clinical studies, and confirm a definition of DCM. Methods: This requires a multi-stakeholder partnership and multiple parallel consensus development processes. It will be conducted via 4 phases, adhering to the guidance set out by the COMET (Core Outcomes in Effectiveness Trials) and JLA (James Lind Alliance) initiatives. Phase 1 will consist of preliminary work to inform online Delphi processes (Phase 2) and a consensus meeting (Phase 3). Following the findings of the consensus meeting, a synthesis of relevant measurement instruments will be compiled and assessed as per the COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) criteria, to allow recommendations to be made on how to measure agreed data points. Phase 4 will monitor and promote the use of eventual recommendations. Conclusions: RECODE-DCM sets out to establish for the first time an index term, minimum dataset, and research priorities together. Our aim is to reduce waste of health care resources in the future by using patient priorities to inform the scope of future DCM research activities. The consistent use of a standard dataset in DCM clinical studies, audit, and clinical surveillance will facilitate pooled analysis of future data and, ultimately, a deeper understanding of DCM. Copyright The Author(s) 2019.
Return of Individual Research Results: A Guide for Biomedical Researchers Utilizing Human BiospecimensSobel, M.E.; Dreyfus, J.C.; O'Leary, T.J. (Elsevier Inc., 2020)The recent movement toward returning individual research results to study subjects/participants generates ethical and legal challenges for laboratories performing research on human biospecimens. The concept of an individual's interest in knowing the results of testing on their tissue is pitted against individual and systemic risks and an established legal framework regulating the performance of laboratory testing for medical care purposes. This article discusses the rationale for returning individual research results to subjects, the potential risks associated with returning these results, and the legal framework in the United States that governs testing of identifiable human biospecimens. On the basis of these considerations, this article provides recommendations for investigators to consider when planning and executing human biospecimen research, with the objective of appropriately balancing the interests of research subjects, the need for ensuring integrity of the research process, and compliance with US laws and regulations. Copyright 2020 American Society for Investigative Pathology
UMB CURE (Continuing Umbrella of Research Experiences) Scholars Program: Training Children to Be Cancer Scientists, Researchers, and MoreSaunders, Robin, Ed.D.; Kareem, Lauren; Callahan, Christine, Ph.D.; Carey, Gregory, Ph.D.; Essien, Aloysius; Hassel, Bret A.; Jackson, Edana; McCraw, Borndavid; Stines, Elsie M.; Sturdivant, Brian; et al. (2017-11)