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Past Opportunities to Provide Input
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Comment on the Proposed New and Revised PCORI Methodology Standards (2016)
- 1. Standards for Formulating Research Questions
- 10: Standards for Studies of Diagnostic Tests
- 12. Standards on Research Designs Using Clusters
- 13: General Comments on the Proposed Revisions to the PCORI Methodology Standards
- 2: Standards Associated with Patient-Centeredness
- 3: Standards for Data Integrity and Rigorous Analysis
- 4: Standards for Preventing and Handling Missing Data
- 5: Standards for Heterogeneity of Treatment Effects
- 6: Standards for Data Registries
- 7: Standards for Data Networks as Research-Facilitating Structures
- 8. Standards for Causal Inference Methods
- 9. Standards for Adaptive Trial Designs
- Peer-Review Process Comments (2014)
- Draft Methodology Report Public Comment Period (2012)
- Past Opportunities to Provide Input
WASHINGTON, D.C. (April 5, 2016) — Evidence-based medicine holds significant potential to enhance the quality of health care and improve patients’ outcomes. But how do the ultimate decision-makers and end users of healthcare services — patients and their caregivers — receive and use medical evidence?
The April issue of Health Affairs presents several studies about the role of evidence in healthcare decisions, the barriers associated with collecting and using data, and opportunities to engage with patients as consumers. The Patient-Centered Outcomes Research Institute (PCORI) supported the issue, which contains several articles on the potentially transformative impact of engaging patients and other stakeholders in the research that generates new data.
“PCORI supports research that produces evidence aimed at helping patients, clinicians, payers, and other stakeholders make better-informed choices about the available healthcare options,” said PCORI Executive Director Joe Selby, MD, MPH. “But evidence is only useful if the decision makers are able to access it, understand it, and find it compelling. We’re pleased to support this special theme issue of Health Affairs, which offers many useful insights and findings to expand our understanding of patients’ use of evidence.”
Several of the articles in the issue were authored by members of PCORI-funded research teams. Free access to these papers is available through this page on PCORI's website.
“Viewpoint: Authentic Engagement of Patients and Communities Can Transform Research, Practice, and Policy”
This commentary by Steven Woolf, MD, MPH, of Virginia Commonwealth University, and coauthors, lays out a road map for the meaningful engagement of patients and other stakeholders in research as true partners, with examples of the benefits it offers to all involved. “Such engagement, although challenging, can enhance the quality and impact of studies on many levels, from ensuring that data are relevant to users’ needs to elevating the moral plane of research by showing respect to patients and vulnerable populations,” the article says. Woolf leads a PCORI-funded project testing an innovative patient-centered decision support tool that accounts for individual preferences.
“The Importance of Integrating Narrative into Health Care Decision Making”
This paper by Daniel Dohan, PhD, of the University of California, San Francisco, and colleagues notes how people use both narratives, such as stories people gather from family and friends, and quantitative evidence in healthcare decision making and describes new tools and approaches that can link both kinds of information to support decisions. Dohan is leading a PCORI-funded effort to refine a tool for presenting qualitative data in a visual format that makes it more accessible and useful to patients and other stakeholders.
“Incorporating Patient-Reported Outcomes into Health Care to Engage Patients and Enhance Care”
This paper authored by Danielle Lavallee, PhD, PharmD, of the University of Washington in Seattle and co-authors discusses the challenges and opportunities for using patient-reported outcomes (PROs) to improve care, highlighting examples of successful practices. Lavallee is leading a PCORI-funded project comparing various methods for involving patients 65 years and older in research prioritization activities.
“Enhancing Shared Decision Making Through Carefully Designed Interventions that Target Patient and Provider Behavior”
This article by Ming Tai-Seale, MD, PhD, of the Palo Alto Medical Foundation Research Institute and co-authors describes how a novel approach to promoting communication between patients and primary care providers was associated with reports from patients of better engagement in shared decision making. Tai-Seale leads a PCORI-funded project studying ways to enhance this kind of dialogue.
“Reinventing the Wheel of Medical Evidence: How the Boot Camp Translation Process Is Making Gains” This article by John Westfall, MD, of the University of Colorado and co-authors describes the success of a process for translating complex screening guidelines into locally relevant messages at improving cancer testing, asthma management, and blood pressure control. PCORI has funded two projects on further evaluating and refining the use of Boot Camp Translation.
Another paper, “Understanding an Informed Public’s Views on the Role of Evidence in Making Health Care Decisions” authored by Kristin Carman, PhD, of the American Institutes for Research, and colleagues present survey findings that indicate the weight respondents give to different kinds of information and who they rely on as key arbiters. Carman is a member of PCORI’s Advisory Panel on Patient Engagement.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
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