scholarly journals The Language of Engagement: "Aha!" Moments from Engaging Patients and Community Partners in Two Pilot Projects of the Patient-Centered Outcomes Research Institute

2016 ◽  
Author(s):  
Ming Tai-Seale
Keyword(s):  
Outcomes Research ◽  
Pilot Projects ◽  
Patient Centered ◽  
Community Partners ◽  
Research Institute

scholarly journals Training patients to review scientific reports for the Patient-Centered Outcomes Research Institute: an observational study

BMJ Open ◽  
2019 ◽  
Vol 9 (9) ◽  
pp. e028732
Author(s):  
Ilya Ivlev ◽  
Kelly J Vander Ley ◽  
Jack Wiedrick ◽  
Kira Lesley ◽  
Amy Forester ◽  
...  
Keyword(s):  
Observational Study ◽  
Peer Review ◽  
Outcomes Research ◽  
Self Efficacy ◽  
Online Training ◽  
Median Number ◽  
Patient Centered ◽  
Quality Improvement Effort ◽  
Patient Advocates ◽  
Research Institute

ObjectiveThe peer review of completed Patient-Centered Outcomes Research Institute (PCORI) funded research includes reviews from patient reviewers (patients, caregivers, and patient advocates). Very little is known about how best to support these reviewers in writing helpful comments from a patient-centred perspective. This study aimed to evaluate the effect of a new training in peer review for patient reviewers.DesignObservational study.SettingOnline.ParticipantsAdults registered in the PCORI Reviewer Database as a patient stakeholder.InterventionA new online training in peer review.Main outcome measuresChanges in reviewers’ knowledge and skills; change in self-efficacy and attitudes, satisfaction with the training and perceived benefits and relevance of the training.ResultsBefore-after training survey data were analysed for 37 (29.4% of 126) patient reviewers invited to participate in an online training as part of a quality improvement effort or as part of a PCORI peer review. The reviewers improved their answers to the knowledge questions (p<0.001, median number of answers improved 4 (95% CI 3 to 5), large effect size (ES) Cohen’sw=0.94) after the training, particularly in the questions targeting the specifics of PCORI peer review. Reviewers improved their skills in recognising helpful review comments, but those without peer-review background improved proportionally more (p=0.008, median number of answers improved 2 (95% CI 1 to 3), medium ESw=0.60). The use of training modestly increased reviewers’ confidence in completing a high-quality peer review (p=0.005, mean increase in 5-point Likert rating 0.51 (95% CI 0.17 to 0.86), small-to-medium ES Cliff’sdelta=0.32) and their excitement about providing a review slightly increased (p=0.019, mean increase in 5-point Likert rating 0.35 (95% CI 0.03 to 0.68), small ESdelta=0.19). All reviewers were satisfied with the training and would recommend it to other reviewers.ConclusionsTraining improved knowledge, skills and self-efficacy and slightly increased enthusiasm for completing a PCORI peer review.

scholarly journals Improving Comparative Effectiveness Research of Complex Health Interventions: Standards from the Patient-Centered Outcomes Research Institute (PCORI)

2020 ◽  
Vol 35 (S2) ◽  
pp. 875-881 ◽  
Author(s):  
Laura C. Esmail ◽  
Rebecca Barasky ◽  
Brian S. Mittman ◽  
David H. Hickam
Keyword(s):  
Comparative Effectiveness Research ◽  
Outcomes Research ◽  
Comparative Effectiveness ◽  
Health Interventions ◽  
Effectiveness Research ◽  
Patient Centered ◽  
Causal Pathways ◽  
Causal Pathway ◽  
Healthcare Interventions ◽  
Research Institute

Abstract Introduction Complex health interventions (CHIs) are increasingly studied in comparative effectiveness research (CER), and there is a need for improvements in CHI research practices. The Patient-Centered Outcomes Research Institute (PCORI) Methodology Committee (MC) launched an effort in 2016 to develop formal guidance on this topic. Objective To develop a set of minimal standards for scientifically valid, transparent, and reproducible CER studies of CHIs. The standards are intended to apply to research examining a broad range of healthcare interventions including delivery system, behavior change, and other non-pharmacological interventions. Methods We conducted a literature review, reviewed existing methods guidance, and developed standards through an iterative process involving the MC, two panels of external research methods experts, and a 60-day public comment period. The final standards were approved by the PCORI MC and adopted by the PCORI Board of Governors on April 30, 2018. Results The final standards include the following: (1) fully describe the intervention and comparator and define their core functions, (2) specify the hypothesized causal pathways and their theoretical basis, (3) specify how adaptations to the form of the intervention and comparator will be allowed and recorded, (4) plan and describe a process evaluation, and (5) select patient outcomes informed by the causal pathway. Discussion The new standards offer three major contributions to research: (1) they provide a simple framework to help investigators address the major methodological features of a CHI study, (2) they emphasize the importance of the causal model and the need to understand how a CHI achieves its effects rather than simply measuring these effects, and (3) they require description of a CHI using the concepts of core functions and forms. While these standards apply formally to PCORI-funded CER studies, they have broad applicability.

scholarly journals Leveraging Patient/Community Partnerships to Disseminate Patient Centered Outcomes Research in Geriatrics

Geriatrics ◽  
2019 ◽  
Vol 4 (2) ◽  
pp. 35
Author(s):  
Lee A. Lindquist ◽  
Anne Seltzer ◽  
Chris Forcucci ◽  
Norine Wong ◽  
Vanessa Ramirez-Zohfeld
Keyword(s):  
Outcomes Research ◽  
Qualitative Interviews ◽  
Medical Patient ◽  
Community Partnerships ◽  
Lessons Learned ◽  
Future Research ◽  
Community Partner ◽  
Patient Centered ◽  
Community Partners ◽  
Future Researcher

Background: With the growth of patient-centered outcomes research (PCOR), partnerships between researchers and patients have presented novel opportunities for disseminating results. A large gap exists in disseminating patient-centered research results to older adult patient end-users. We sought to examine the experiences of patient/community partners in disseminating PCOR results and characterize lessons learned that may facilitate future researcher-patient/community dissemination partnerships. Methods: Patient/community partners who participated in geriatrics-focused PCORI-funded research and were active in disseminating results, as part of their planned activities, were recruited for one-to-one qualitative interviews. Constant comparative and thematic analysis were used to identify and describe common themes that emerged in a survey of open-ended questions. Results: Ten individuals (four community partners, six patients) aged 55–87 years were interviewed. Analysis revealed that for successful dissemination, subjects felt it was vital to reach out to people affected by the results, leverage personal stories, and tap into pre-developed programming. Patient/Community partners identified potential audiences through word-of-mouth, community requests, and mapping a list of audiences—targeting those directly affected as well as those who worked with the audience (e.g., not specifically medical). Patient/community partners recommended that researchers engage patient/community partners for suggestions on audiences, show empathy, include diverse populations, and maintain a community-focus. One community partner stated, “Why wouldn’t we help disseminate results? It’s a no-brainer. We know people!” Conclusion: Patient/community partners provide effective ways to communicate results, new audiences to reach, improved communication with different audiences, and improved credibility of the findings. The lessons learned have implications for assisting future research-patient/community partnerships in the dissemination of their patient-centered research.

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