scholarly journals The Patient-Centered Outcomes Research Network Antibiotics and Childhood Growth Study: Implementing Patient Data Linkage

2020 ◽  
Vol 23 (6) ◽  
pp. 438-444
Author(s):  
Melanie Canterberry ◽  
Alan F. Kaul ◽  
Satyender Goel ◽  
Pi-I Debby Lin ◽  
Jason P. Block ◽  
...  
Keyword(s):  
Outcomes Research ◽  
Data Linkage ◽  
Patient Data ◽  
Research Network ◽  
Growth Study ◽  
Patient Centered ◽  
Childhood Growth

scholarly journals Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards

2018 ◽  
Vol 28 (Supp) ◽  
pp. 303-310 ◽  
Author(s):  
Ashley Wennerstrom ◽  
Benjamin F. Springgate ◽  
Felica Jones ◽  
Diana Meyers ◽  
Norris Henderson ◽  
...  
Keyword(s):  
Los Angeles ◽  
Outcomes Research ◽  
Technical Assistance ◽  
African American Men ◽  
Knowledge Exchange ◽  
Lessons Learned ◽  
Research Network ◽  
Patient Centered ◽  
Research Partnerships ◽  
New Research

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of nov­el patient- and stakeholder-centered part­nerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research pro­posals. Community partnered participatory research (CPPR) provides a useful frame­work for structuring new partnerships.In this article we highlight the origins, de­velopment, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects – Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men – use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be ap­plicable to other groups planning to create new partnerships focused on implementing PCOR.Ethn Dis. 2018;28(Suppl 2):303- 310; doi:10.18865/ed.28.S2.303.

A Comprehensive Stakeholder Engagement Plan for the Patient Centered Outcomes Research Network (PCORnet) Bariatric Study

2016 ◽  
Vol 12 (7) ◽  
pp. S194-S195
Author(s):  
Karen Coleman ◽  
Neely Williams ◽  
Jane Anau ◽  
Caroline Apovian ◽  
Anita Courcoulas ◽  
...  
Keyword(s):  
Outcomes Research ◽  
Stakeholder Engagement ◽  
Research Network ◽  
Patient Centered

scholarly journals CAPriCORN: Chicago Area Patient-Centered Outcomes Research Network

2014 ◽  
Vol 21 (4) ◽  
pp. 607-611 ◽  
Author(s):  
A. N. Kho ◽  
D. M. Hynes ◽  
S. Goel ◽  
A. E. Solomonides ◽  
R. Price ◽  
...  
Keyword(s):  
Outcomes Research ◽  
Research Network ◽  
Patient Centered ◽  
Chicago Area

Establishment of a Patient-Centered Outcomes Research Network for Individuals with TBI and Neuropsychiatric Symptoms

Brain Injury ◽  
2020 ◽  
Vol 34 (4) ◽  
pp. 548-555
Author(s):  
Vani A. Rao ◽  
Kathleen T. Bechtold ◽  
David B. Arciniegas ◽  
Quincy M. Samus ◽  
Jennifer Albrecht ◽  
...  
Keyword(s):  
Outcomes Research ◽  
Neuropsychiatric Symptoms ◽  
Research Network ◽  
Patient Centered

scholarly journals Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn’s and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners)

2016 ◽  
Vol 23 (3) ◽  
pp. 485-490 ◽  
Author(s):  
Arlene E Chung ◽  
Robert S Sandler ◽  
Millie D Long ◽  
Sean Ahrens ◽  
Jessica L Burris ◽  
...  
Keyword(s):  
Outcomes Research ◽  
Health Data ◽  
Research Network ◽  
Patient Centered ◽  
Health Care Decisions ◽  
Bowel Diseases ◽  
Inflammatory Bowel ◽  
Participation In Research ◽  
Test Patient ◽  
Improve Health

The Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance and accelerate comparative effectiveness and translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed to overcome the major obstacles that have limited patient-centered outcomes research in IBD by providing the technical infrastructure, patient governance, and patient-driven functionality needed to: 1) identify, prioritize, and undertake a patient-centered research agenda through sharing person-generated health data; 2) develop and test patient and provider-focused tools that utilize individual patient data to improve health behaviors and inform health care decisions and, ultimately, outcomes; and 3) rapidly disseminate new knowledge to patients, enabling them to improve their health. The Crohn’s and Colitis Foundation of America Partners PPRN has fostered the development of a community of citizen scientists in IBD; created a portal that will recruit, retain, and engage members and encourage partnerships with external scientists; and produced an efficient infrastructure for identifying, screening, and contacting network members for participation in research.

scholarly journals Methodological standards for qualitative and mixed methods patient centered outcomes research

BMJ ◽  
2020 ◽  
pp. m4435
Author(s):  
Bridget Gaglio ◽  
Michelle Henton ◽  
Amanda Barbeau ◽  
Emily Evans ◽  
David Hickam ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Outcomes Research ◽  
Patient Centered

Impact of cardiac rehabilitation on 3 year outcomes amongst patients after acute coronary syndrome: (ACS) SNAPSHOT ACS follow-up study

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
J Redfern ◽  
K Hyun ◽  
D Brieger ◽  
D Chew ◽  
J French ◽  
...  
Keyword(s):  
Acute Coronary Syndrome ◽  
Cardiac Rehabilitation ◽  
Data Linkage ◽  
Research Network ◽  
Funding Source ◽  
Cardiovascular Research ◽  
Coronary Syndrome ◽  
Follow Up Study ◽  
Significant Difference

Abstract Background Cardiovascular disease is the leading cause of disease burden globally. With advancements in medical and surgical care more people are surviving initial acute coronary syndrome (ACS) and are in need of secondary prevention and cardiac rehabilitation (CR). Increasing availability of high quality individual-level data linkage provides robust estimates of outcomes long-term. Purpose To compare 3 year outcomes amongst ACS survivors who did and did not participate in Australian CR programs. Methods SNAPSHOT ACS follow-up study included 1806 patients admitted to 232 hospitals who were followed-up by data linkage (cross-jurisdictional morbidity, national death index, Pharmaceutical Benefit Schedule) at 6 and 36 months to compare those who did/not attend CR. Results In total, the cohort had a mean age of 65.8 (13.4) years, 60% were male, only 25% (461/1806) attended CR. During index admission, attendees were more likely to have had PCI (39% v 14%, p<0.001), CABG (11% v 2%, p<0.001) and a diagnosis of STEMI (21% v 5%, p<0.001) than those who did not attend. However, there was no significant difference between CR attendees/non-attendees for risk factors (LDL-cholesterol, smoking, obesity). Only 19% of eligible women attended CR compared to 30% of men (p<0.001). At 36 months, there were fewer deaths amongst CR attendees (19/461, 4.1%) than non-attendees (116/1345, 8.6%) (p=0.001). CR attendees were more likely to have repeat ACS, PCI, CABG at both 6 and 36 months (Table). At 36 months, CR attendees were more likely to have been prescribed antiplatelets (78% v 53%, p<0.001), statins (91% 73%, p<0.001), beta-blockers (11% v 13%, p=0.002) and ACEI/ARBs (72% v 61%, p<0.001) than non-attendees. Conclusions Amongst Australian ACS survivors, participation in CR was associated with less likelihood of death and increased prescription of pharmacotherapy. However, attendance at CR was associated with higher rates of repeat ACS and revascularisation. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): New South Wales Cardiovascular Research Network, National Heart Foundation

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