scholarly journals How different is research done by the Patient-centered Outcomes Research Institute, and what difference does it make?

2019 ◽  
Vol 8 (14) ◽  
pp. 1239-1251 ◽  
Author(s):  
Bryan R Luce ◽  
Jason C Simeone
Keyword(s):  
Real World ◽  
Outcomes Research ◽  
Survival Function ◽  
Healthcare Research ◽  
Study Patient ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Real World Setting ◽  
Outcomes Study ◽  
Research Institute

Aim: To determine whether research funded by the Patient-centered Outcomes Research Institute (PCORI) is consistent with the original aims of Congress and unique among other major USA funders. Methods: We compared a sample of funded projects from PCORI, NIH (Phase IV) and agency for healthcare research and quality (AHRQ; American Recovery and Reinvestment Act [ARRA]-based comparative effectiveness research funding) from 2014 to 2018 on number of outcomes/study, patient-centeredness of outcomes (those related to survival, function, symptoms and health-related quality of life) and other features that may characterize patient-centered research (e.g., whether conducted in a real-world setting) using PCORI portfolio data and ClinicalTrials.gov. Results: The mean number of outcomes in PCORI studies (≥9) appeared higher than NIH (≥3)/AHRQ (5.5); a higher percentage of outcomes/study were patient-centered: >85% PCORI versus 50% AHRQ and ≤30% NIH. The majority of PCORI studies (≥74%) were conducted in a real-world setting; this characteristic could not be identified for NIH/AHRQ studies. Conclusion: PCORI-funded studies appear to have unique aspects relative to NIH and AHRQ that are consistent with PCORI’s aims of patient-centeredness.

Person-centered health policy in the US: the case of the Patient-Centered Outcomes Research Institute (PCORI)

2016 ◽  
Vol 4 (2) ◽  
pp. 396
Author(s):  
Sandra Tanenbaum
Keyword(s):  
Affordable Care Act ◽  
Outcomes Research ◽  
Comparative Effectiveness ◽  
Healthcare Reform ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Reform Legislation ◽  
The Us ◽  
Research Institute

The Patient-Centered Outcomes Research Institute, known as PCORI, was created by the U.S. healthcare reform legislation of 2010. The Affordable Care Act (ACA), sometimes referred to as “Obamacare,” provided for a public-private institute concerned primarily with funding and guiding comparative effectiveness research. Through a uniquely American blend of anti-statist ideology, corporate interest and disability activism, the determination of comparative effectiveness would also be tasked with patient-centeredness, a concept which PCORI has defined and operationalized. This represents a step toward person-centered healthcare, but unresolved issues of true personalization remain.

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 What Do Patients Complain About Online: A Systematic Review and Taxonomy Framework Based on Patient Centeredness (Preprint)

2019 ◽  
Author(s):  
Jing Liu ◽  
Shengchao Hou ◽  
Richard Evans ◽  
Chenxi Xia ◽  
Weidong Xia ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
A Priori ◽  
Patient Experiences ◽  
Study Patient ◽  
Significant Heterogeneity ◽  
Care Providers ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Wide Range

BACKGROUND Complaints made online by patients about their health care experiences are becoming prevalent because of widespread worldwide internet connectivity. An a priori framework, based on patient centeredness, may be useful in identifying the types of issues patients complain about online across multiple settings. It may also assist in examining whether the determinants of patient-centered care (PCC) mirror the determinants of patient experiences. OBJECTIVE The objective of our study was to develop a taxonomy framework for patient complaints online based on patient centeredness and to examine whether the determinants of PCC mirror the determinants of patient experiences. METHODS First, the best fit framework synthesis technique was applied to develop the proposed a priori framework. Second, electronic databases, including Web of Science, Scopus, and PubMed, were searched for articles published between 2000 and June 2018. Studies were only included if they collected primary quantitative data on patients’ online complaints. Third, a deductive and inductive thematic analysis approach was adopted to code the themes of recognized complaints into the framework. RESULTS In total, 17 studies from 5 countries were included in this study. Patient complaint online taxonomies and theme terms varied. According to our framework, patients expressed most dissatisfaction with patient-centered processes (101,586/204,363, 49.71%), followed by prerequisites (appropriate skills and knowledge of physicians; 50,563, 24.74%) and the care environment (48,563/204,363, 23.76%). The least dissatisfied theme was expected outcomes (3651/204,363, 1.79%). People expressed little dissatisfaction with expanded PCC dimensions, such as involvement of family and friends (591/204,363, 0.29%). Variation in the concerns across different countries’ patients were also observed. CONCLUSIONS Online complaints made by patients are of major value to health care providers, regulatory bodies, and patients themselves. Our PCC framework can be applied to analyze them under a wide range of conditions, treatments, and countries. This review has shown significant heterogeneity of patients’ online complaints across different countries.

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