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 Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Emily M. Godfrey ◽  
Erin K. Thayer ◽  
Laura Mentch ◽  
Traci M. Kazmerski ◽  
Georgia Brown ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Training Program ◽  
Outcomes Research ◽  
Research Training ◽  
Training Session ◽  
Research Process ◽  
Group Training ◽  
Patient Centered ◽  
Session Satisfaction ◽  
Community Patients

Abstract Background Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction. Methods Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training. Results A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program. Conclusions Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

scholarly journals IRB Oversight of Patient-Centered Outcomes Research: A National Survey of IRB Chairpersons

2018 ◽  
Vol 13 (4) ◽  
pp. 421-431 ◽  
Author(s):  
Joel S. Weissman ◽  
Eric G. Campbell ◽  
I. Glenn Cohen ◽  
Holly Fernandez Lynch ◽  
Emily A. Largent ◽  
...  
Keyword(s):  
National Survey ◽  
Outcomes Research ◽  
Human Subjects ◽  
The United States ◽  
Ethical Challenges ◽  
Research Subjects ◽  
Scientific Enterprise ◽  
Patient Centered ◽  
Regulatory Issues ◽  
Institutional Review

Patient-centered outcomes research (PCOR) is becoming increasingly common. However, there is little evidence regarding what novel ethical challenges, if any, are posed by PCOR with relevance to institutional review board (IRB) oversight and human subjects protections. This article reports the results of a national survey of all IRB chairpersons from research-intensive institutions in the United States. Findings address the responsibilities of IRBs and the challenges associated with PCOR review and oversight. IRB chairpersons varied in their judgment of PCOR’s overall value to the scientific enterprise and to research at their institution. Furthermore, 27% of respondents considered patients serving in nontraditional roles to be research subjects even when they are not enrolled in research. There was also variation in the training and safeguards their IRBs require for patient partners. Our results suggest that guidance should be developed around ethical and regulatory issues associated with PCOR oversight.

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.

Responding to discriminatory requests for a different healthcare provider

2013 ◽  
Vol 21 (1) ◽  
pp. 86-96 ◽  
Author(s):  
Kyle Anstey ◽  
Linda Wright
Keyword(s):  
Healthcare Provider ◽  
Healthcare Providers ◽  
Workplace Discrimination ◽  
The Other ◽  
Care Providers ◽  
Patient Centered ◽  
Respect For Autonomy ◽  
Centered Care ◽  
Caregiver Preference ◽  
The One

Patient requests for a healthcare provider of a particular race or sexual orientation create a conflict of obligations. On the one hand, providers have a duty to deliver clinically indicated care consistent with patient preferences. On the other hand, providers have legal, professional, and organizational assurances that they should not suffer workplace discrimination. Protecting healthcare providers from harm while maintaining obligations to patients requires unambiguous messaging to both parties. Providers need to be clear that their organization will not be complicit in discrimination against them, instead supporting their needs and preferences for management of the situation. In a context of patient-centered care, harm principle-based boundaries of respect for autonomy must be defined. A Caregiver preference guideline developed and used at University Health Network, Toronto provides a standardized way for the organization to decide when it will honor patient requests for providers of a particular background. This process stresses dialogue, assessment of clinical feasibility, and empowerment and support for affected care providers.

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

scholarly journals What is stopping us? An implementation science study of kangaroo care in British Columbia’s neonatal intensive care units

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah Coutts ◽  
Alix Woldring ◽  
Ann Pederson ◽  
Julie De Salaberry ◽  
Horacio Osiovich ◽  
...  
Keyword(s):  
Intensive Care ◽  
Healthcare Provider ◽  
Preterm Infants ◽  
Neonatal Intensive Care ◽  
Healthcare Providers ◽  
Neurodevelopmental Outcomes ◽  
Kangaroo Care ◽  
Optimal Care ◽  
Barriers And Enablers ◽  
Provider Beliefs

Abstract Background The goal of the Neonatal Intensive Care Unit (NICU) is to provide optimal care for preterm and sick infants while supporting their growth and development. The NICU environment can be stressful for preterm infants and often cannot adequately support their neurodevelopmental needs. Kangaroo Care (KC) is an evidence-based developmental care strategy that has been shown to be associated with improved short and long term neurodevelopmental outcomes for preterm infants. Despite evidence for best practice, uptake of the practice of KC in resource supported settings remains low. The aim of this study was to identify and describe healthcare providers’ perspectives on the barriers and enablers of implementing KC. Methods This qualitative study was set in 11 NICUs in British Columbia, Canada, ranging in size from 6 to 70 beds, with mixed levels of care from the less acute up to the most complex acute neonatal care. A total of 35 semi-structured healthcare provider interviews were conducted to understand their experiences providing KC in the NICU. Data were coded and emerging themes were identified. The Consolidated Framework for Implementation Research (CFIR) guided our research methods. Results Four overarching themes were identified as barriers and enablers to KC by healthcare providers in their particular setting: 1) the NICU physical environment; 2) healthcare provider beliefs about KC; 3) clinical practice variation; and 4) parent presence. Depending on the specific features of a given site these factors functioned as an enabler or barrier to practicing KC. Conclusions A ‘one size fits all’ approach cannot be identified to guide Kangaroo Care implementation as it is a complex intervention and each NICU presents unique barriers and enablers to its uptake. Support for improving parental presence, shifting healthcare provider beliefs, identifying creative solutions to NICU design and space constraints, and the development of a provincial guideline for KC in NICUs may together provide the impetus to change practice and reduce barriers to KC for healthcare providers, families, and administrators at local and system levels.

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
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