Background: The uptake of research findings into clinical practice is critical to providing health care that improves health outcomes for patients. This study explored how Patient-Centered Outcomes Research Institute (PCORI) awardees perceive the relationship between engagement of patients and other partners in research and three uses, or applications, of patient-centered comparative clinical effectiveness research (CER) study findings, which may lead to uptake in clinical practice: (1) Integration into clinical practice guidelines, recognized point-of-care decision tools, or documents that may inform policy; (2) Implementation beyond the study, including at sites outside of the study setting or patient populations; and (3) Active dissemination of findings to specific audiences by parties external to the study team.
Methods: This exploratory qualitative study examined awardee and partner perceptions of what led to each use of study findings and how engaged partners contributed.
Introduction: Limited evidence exists about which patient and stakeholder engagement practices support or hinder study teams as they negotiate different viewpoints in decisions about the design and conduct of patient-centered outcomes research.
Methods: We applied a multiple-embedded descriptive case study design for six studies funded by the Patient-Centered Outcomes Research Institute (PCORI). We interviewed 32 researchers and stakeholder partners, including patients, caregivers and clinicians, and reviewed documents related to each study (e.
Contemp Clin Trials Commun
June 2023
Background: Most researchers and study participants believe that the summary, or aggregate, results of health research should be returned to study participants. However, researchers often do not return aggregate results. A better understanding of the impediments to results return could support improvements in this practice.
View Article and Find Full Text PDFObjective: To advance equity by developing stakeholder-driven principles of shared measurement, which is using a common set of measurable goals that reflect shared priorities across communities and systems, such as health care, public health, and human and social services.
Data Sources: From October 2019 to July 2021, we collected primary data from leaders in cross-systems alignment, measurement, and community engagement-including community members and community-based organization leaders-across the United States.
Study Design: In partnership with equity and community engagement experts, we conducted a mixed-methods study that included multiple formative research activities and culminated in a six-week, stakeholder-engaged modified-Delphi process.
Background: Engaging patients and other stakeholders as partners in research offers promise in improving the relevance and usefulness of research findings.
Objective: To explore the influence and impact of patient and other stakeholder engagement on the planning and conduct of comparative effectiveness research studies.
Design: Qualitative study with virtual, hour-long semi-structured interviews.
Background: Plain language translation may facilitate the public's ability to understand and use results of scientific research. Brief description of activity: This article describes the Patient-Centered Outcomes Research Institute's (PCORI) approach to and lessons learned from developing plain language summaries of PCORI-funded research for the lay public.
Implementation: We developed and tested a standard template for the summaries, incorporating feedback in the template design from focus groups with members of the public.
Background: US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making.
Objective: To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives.
Objective: To understand public attitudes about and recommendations to address antibiotic overuse by employing public deliberation (a method for eliciting informed input on value-laden issues).
Data Sources/study Setting: Participants in 24 Community Deliberation groups (CD; n = 263), four Citizens' Panel groups (CP; n = 96), and a control group (n = 348). Data were collected in 2012 in four U.
This randomized controlled trial tested an intervention to increase uptake of hospital-level maternity care quality reports among 245 pregnant women in North Carolina (123 treatment; 122 control). The intervention included three enhancements to the quality report offered to the control: (a) biweekly text messages or e-mails directing women to the website, (b) videos and materials describing the relevance of quality measures to pregnant women's interests, and (c) tools to support discussions with clinicians. Compared with controls, intervention participants were significantly more likely to visit the website and report adopting behaviors to inform care, such as thinking through preferences, talking with their doctor, or creating a birth plan.
View Article and Find Full Text PDFBackground: Decision makers are increasingly tasked with reducing health care costs, but the public may be mistrustful of these efforts. Public deliberation helps gather input on these types of issues by convening a group of diverse individuals to learn about and discuss values-based dilemmas.
Objective: To explore public perceptions of health care costs and how they intersect with medical mistrust.
We obtained and qualitatively analyzed input from more than nine hundred citizens during seventy-six public deliberation sessions about patient and physician autonomy in decision making, setting health care boundaries, and the tensions among competing social values. Generally, participants resisted interference with the patient-physician relationship and believed strongly in the freedom of patient and physician to control individual medical decisions. However, during deliberation participants identified two situations where boundaries and regulations in health care were more acceptable: protecting people from harm and allocating limited resources.
View Article and Find Full Text PDFBackground. Urinary tract infections (UTIs) are a significant medical problem , particularly for patients with neurological conditions and the elderly. Detection is often difficult in these patients, resulting in delayed diagnoses and more serious infections such as pyelonephritis and life-threatening sepsis.
View Article and Find Full Text PDFPolicy makers and practitioners increasingly believe that medical evidence plays a critical role in improving care and health outcomes and lowering costs. However, public understanding of the role of evidence-based care may be different. Public deliberation is a process that convenes diverse citizens and has them learn about and consider ethical or values-based dilemmas and weigh alternative views.
View Article and Find Full Text PDFObjective: To explore factors that may influence use of comparative public reports for hospital maternity care.
Data Sources: Four focus groups conducted in 2013 with 41 women and preintervention survey data collected in 2014 to 2015 from 245 pregnant women in North Carolina.
Study Design: As part of a larger randomized controlled trial, we conducted qualitative formative research to develop an intervention that will be evaluated through pre- and postintervention surveys.
The Patient and Family Engagement Framework and the Roadmap for Patient and Family Engagement in Healthcare Practice and Research are tools designed to create a shared understanding of what patient and family engagement is and how it can be translated into concrete action.
View Article and Find Full Text PDFUnlabelled: Public deliberation elicits informed perspectives on complex issues that are values-laden and lack technical solutions. This Deliberative Methods Demonstration examined the effectiveness of public deliberation for obtaining informed public input regarding the role of medical evidence in U.S.
View Article and Find Full Text PDFEfforts to engage patients and consumers in comparative effectiveness research (CER) in the USA are still in the early stages, and the outcomes of these partnerships have yet to be fully understood or realized. Our work assisting federal agencies and national organizations who engage patients and consumers in CER reveal three unresolved tensions around the representation of the patient experience in the research process, the culture of research and capacity to partner with patients and consumers, and the conflict between the methodological approaches to CER and the outcomes of interest to patients and caregivers. Several approaches to address these tensions have emerged, yet resolving these tensions will require addressing many system-level challenges and building an evidence base for consumer engagement in CER.
View Article and Find Full Text PDFPatient and family engagement offers a promising pathway toward better-quality health care, more-efficient care, and improved population health. Since definitions of patient engagement and conceptions of how it works vary, we propose a framework. We first present the forms engagement can take, ranging from consultation to partnership.
View Article and Find Full Text PDFWe undertook focus groups, interviews, and an online survey with health care consumers as part of a recent project to assist purchasers in communicating more effectively about health care evidence and quality. Most of the consumers were ages 18-64; had health insurance through a current employer; and had taken part in making decisions about health insurance coverage for themselves, their spouse, or someone else. We found many of these consumers' beliefs, values, and knowledge to be at odds with what policy makers prescribe as evidence-based health care.
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