scholarly journals Patient-centered outcomes research and the injured patient: a summary of application

2020 ◽  
Vol 5 (1) ◽  
pp. e000422 ◽  
Author(s):  
Laura N Godat ◽  
Aaron R Jensen ◽  
Deborah M Stein
Keyword(s):  
Outcomes Research ◽  
Healthcare Providers ◽  
Research Priorities ◽  
Injured Patient ◽  
Early Career ◽  
Thromboembolism Prophylaxis ◽  
Patient Centered ◽  
Trauma Research ◽  
Injury Research ◽  
Trauma Surgeons

As trauma surgeons, we focus on the immediate care and needs of the injured patient every day. Historically, trauma and injury research has focused on outcomes such as mortality, complications, and length of stay; and process metrics such as time to CT scan, resuscitation checklist frequencies, or venous thromboembolism prophylaxis rates. These outcomes are perceived by healthcare providers to be important, but patients likely have different perceptions of what outcomes are most important to measure and improve. True patient-centered outcomes research involves the healthcare providers, and the entire team of stakeholders including patients and the community. Understanding the process of stakeholder engagement and the barriers trauma researchers must overcome to effectively enter this field of research is important. This summary aims to inform the trauma research community on the basics of patient-centered outcomes research, priorities for funding from the Patient-Centered Outcomes Research Institute, resources for collaboration around patient-centered outcomes research, and a unique career development and training opportunity for early career trauma surgeons to develop a skill set in patient-centered outcomes research.

scholarly journals The educational needs and preferences for patient-centered outcomes research in the cystic fibrosis community: A mixed-methods study (Preprint)

2020 ◽  
Author(s):  
Emily M. Godfrey ◽  
Traci M. Kazmerski ◽  
Georgia Brown ◽  
Erin K Thayer ◽  
Laura Mentch ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Training Program ◽  
Healthcare Provider ◽  
Outcomes Research ◽  
Healthcare Providers ◽  
Research Subjects ◽  
Patient Centered ◽  
Research Teams ◽  
World Cafe ◽  
Training Format

BACKGROUND Cystic fibrosis (CF) is a rare, life-shortening, multi-organ disease that has seen significant increases in life expectancy. Many advances in CF care are due to the active participation of people with CF as research subjects. Yet, most CF research teams do not yet fully partner with people with CF or their caregivers on the research team. OBJECTIVE To determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. METHODS We surveyed patients, caregivers, researchers, research staff and diverse healthcare providers via listservs and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with three small-group World Café discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics and thematic analysis. RESULTS A total of 170 participants completed the survey (56% patients/caregivers; 44% researchers/healthcare providers). Among providers, 19% were physicians/advanced practice providers, 20% nurses, 30% social workers, and 24% were from other disciplines. Among all participants, 86% expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/healthcare provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (85%). Researchers/healthcare providers desired information on how to include outcomes important to patients/caregivers (74%) and the quality and impact of PCOR research (70%, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (78%). Researchers/healthcare providers wanted to receive training about how to establish trust (64%) and maintain confidentiality (64%) when patient or caregiver partners are on the PCOR team. During World Café discussions, participants emphasized the importance of addressing the patient/caregiver and research/healthcare provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on “how” to do PCOR. CONCLUSIONS Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current methodological research gap. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.

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

Stakeholder impact on the implementation of integrated care: Opportunities to consider for patient-centered outcomes research

2020 ◽  
pp. 106256
Author(s):  
Shannon M. Kearney ◽  
Kelly Williams ◽  
Cara Nikolajski ◽  
Margaret Park ◽  
Kevin L. Kraemer ◽  
...  
Keyword(s):  
Integrated Care ◽  
Outcomes Research ◽  
Patient Centered

scholarly journals FP02.08 Importance of Stakeholder Engagement in a Patient-Centered Outcomes Research Trial

2021 ◽  
Vol 16 (3) ◽  
pp. S192
Author(s):  
V. Musigdilok ◽  
B. Creekmur ◽  
E. Rozema ◽  
M. Gould
Keyword(s):  
Outcomes Research ◽  
Stakeholder Engagement ◽  
Patient Centered

Orthopaedic Trauma Research Priorities in Latin America

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Heather J. Roberts ◽  
Madeline C. MacKechnie ◽  
David W. Shearer ◽  
Julio Segovia Altieri ◽  
Fernando de la Huerta ◽  
...  
Keyword(s):  
Latin America ◽  
Research Priorities ◽  
Orthopaedic Trauma ◽  
Trauma Research

Ethical Considerations in Emergency Planning, Preparedness, and Response to Acts of Terrorism

2003 ◽  
Vol 18 (3) ◽  
pp. 170-178 ◽  
Author(s):  
Gregory Luke Larkin ◽  
Jeffrey Arnold
Keyword(s):  
Critical Incident ◽  
Healthcare Workers ◽  
Healthcare Providers ◽  
Health Utility ◽  
Weapons Of Mass Destruction ◽  
Mass Destruction ◽  
Ethical Considerations ◽  
Patient Centered ◽  
Scarce Resources ◽  
Virtuous Behavior

AbstractThroughout the globe, healthcare providers are increasingly challenged with the specter of terrorism and the fallout from weapons of mass destruction. Preparing for and responding to such manmade emergencies, however, threatens the ethical underpinnings of routine, individualized, patient-centered, emergency healthcare. The exigency of a critical incident can instantly transform resource rich environs, to those of austerity. Healthcare workers, who only moments earlier may have been seeing two to three patients per hour, are instantly thrust into a sea of casualties and more basic lifeboat issues of quarantine, system overload and the thornier determinations of who will be given every chance to live and who will be allowed to die. Beyond the tribulations of triage, surge capacity, and the allocation of scarce resources, terrorism creates a parallel need for a host of virtues not commonly required in daily medical practice, including prudence, courage, justice, stewardship, vigilance, resilience, and charity. As a polyvalent counterpoint to the vices of apathy, cowardice, profligacy, recklessness, inflexibility, and narcissism, the virtues empower providers at all levels to vertically integrate principles of safety, public health, utility, and medical ethics at the micro, meso, and macro levels. Over time, virtuous behavior can be modeled, mentored, practiced, and institutionalized to become one of our more useful vaccines against the threat of terrorism in the new millennium.

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