Abstract
For research to be useful, trustworthy, and ultimately lead to greater dissemination of findings to patients and communities, it is important to train and mentor academic researchers to meaningfully engage community members in patient-centered outcomes research (PCOR). Thus, it is necessary for research institutions to strengthen their underlying infrastructure to support PCOR. PATIENTS—PATient-centered Involvement in Evaluating effectiveNess of TreatmentS—at the University of Maryland, Baltimore, focuses on improving PCOR methods and addressing health disparities. It relies on evidence-based engagement methods to sustain and leverage innovative partnerships so patients, health care providers, and academic partners are motivated to participate in the conduct and dissemination of PCOR. Program components address training needs, bi-directional engagement, cultural competency, and dissemination and implementation. Activities (guided by community representatives, leadership from university schools, patient advocates, and PCOR experts) include providing resources, conducting PCOR projects, engaging community members, and disseminating PCOR findings. With its emphasis on the broad range of PCOR topics and methods, and through fostering sustainable relationships with community members and researchers, PATIENTS has successfully cultivated bi-directional partnerships and provided operational and scientific support for a new generation of skilled PCOR researchers. Early evidence of effectiveness includes progress in training and mentoring students and investigators, an increase in submission of PCOR proposals, and community-informed strategies for dissemination. Programs such as PATIENTS reinforce the value of bridging the traditional divide between academia and communities to support patient- and community-engaged dissemination and implementation research and foster sustainable PCOR infrastructure.
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Acknowledgments
Westat serves on the PATIENTS internal steering committee and as the internal evaluators of the program. The authors gratefully acknowledge Liz Jansky for her feedback and Nora Dluzak for manuscript preparation. They would also like to thank the community partners and trainees who participated in the interviews as well as the staff and partners of the PATIENTS program.
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The findings reported have not been previously published and the manuscript is not being simultaneously submitted elsewhere. These data have not been reported elsewhere. Authors have full control of all primary data and agree to allow the journal to review these data if requested.
Funding
This study was funded by AHRQ Grant Number: R24 HS022135.
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All authors declare that they have no conflict of interest.
Ethical approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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The described study has received IRB approval from University of Maryland, Baltimore and Westat.
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Implications
Policy: Investment and support from funders and policymakers can strengthen institutional infrastructure to train and mentor researchers in patient-centered outcomes research (PCOR).
Practice: Healthcare delivery systems are critical partners for dissemination and implementation of findings emerging from research that engages patients and communities.
Research: For research to be useful, trustworthy, and lead to greater dissemination of findings, academic researchers must partner with patients and communities in PCOR.
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Huang, J., Lipman, P.D. & Daniel Mullins, C. Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research. Behav. Med. Pract. Policy Res. 7, 773–782 (2017). https://doi.org/10.1007/s13142-017-0487-z
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DOI: https://doi.org/10.1007/s13142-017-0487-z