scholarly journals Experiences of an HCV Patient engagement group: a seven-year journey

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Scott Kixmiller ◽  
◽  
Anquenette P. Sloan ◽  
Summer Wadsworth ◽  
Finton Brown ◽  
...  
Keyword(s):  
Patient Engagement ◽  
Healthcare Research ◽  
Lessons Learned ◽  
Patient Centered ◽  
Stakeholder Perspectives ◽  
Patient Race ◽  
Collect Patient Data ◽  
Study Implementation ◽  
Clinical Benefits ◽  
Group A

AbstractHistorically, few publications exist where patient engagement in clinical studies is a driving force in study design and implementation. The Patient Centered Outcomes Research Institute (PCORI), established in 2010, employed a new model of integrating stakeholder perspectives into healthcare research. This manuscript aims to share the experience of a Patient Engagement Group (PEG) that has engaged in hepatitis C (HCV) clinical research alongside investigators conducting two studies funded by PCORI and to inspire others to get more involved in research that can impact our healthcare and health policies.There are many gaps in treating infectious diseases. Traditionally, treatment and research have been strictly clinical/medical approaches with little focus on the biopsychosocial aspects of individual patients. Our PEG reflected on its own personal experiences regarding how research design can affect study implementation by including patients who are normally excluded. We considered barriers to treatment, out of pocket costs, access to insurance, and patient race/ethnicity. Common themes were discovered, and four major topics were discussed. In addition, measures used in the two studies to collect patient data were considered, tested, and implemented by the group.We describe in detail how we were formed and how we have worked together with researchers on two PCORI funded projects over the past 7 years. We formulated and implemented guidelines and responsibilities for operating as a PEG as well as appointing a chair, co-chair, and primary author of this manuscript.Written from the perspective of a PEG whose members experienced HCV treatment and cure, we provide lessons learned, and implications for further research to include patients. PEGs like ours who are included as active partners in research can provide useful input to many areas including how patients are treated during clinical trials, how they interact with research teams, and how the clinical benefits of drugs or devices are defined and evaluated. PCORI believes engagement impacts research to be more patient-centered, useful, and trustworthy, and will ultimately lead to greater use and interest of research results by the patient and the broader healthcare community.

Incorporating Stakeholder Perspectives on Scarce Resource Allocation: Lessons Learned from Policymaking in a Time of Crisis

2021 ◽  
Vol 30 (2) ◽  
pp. 390-402
Author(s):  
BETHANY BRUNO ◽  
HEATHER MCKEE HURWITZ ◽  
MARYBETH MERCER ◽  
HILARY MABEL ◽  
LAUREN SANKARY ◽  
...  
Keyword(s):  
Policy Development ◽  
Ethical Decision Making ◽  
Stakeholder Involvement ◽  
Organizational Ethics ◽  
Lessons Learned ◽  
Future Research ◽  
Patient Centered ◽  
Stakeholder Perspectives ◽  
Stakeholder Input ◽  
Ethics Dilemma

AbstractThe coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work.

scholarly journals Training in patient-centered outcomes research for specific researcher communities

2017 ◽  
Vol 1 (5) ◽  
pp. 278-284
Author(s):  
Douglas P. Landsittel ◽  
Larry Kessler ◽  
Christopher H. Schmid ◽  
Paul Marantz ◽  
Maria E. Suarez-Almazor ◽  
...  
Keyword(s):  
Comparative Effectiveness Research ◽  
Outcomes Research ◽  
Comparative Effectiveness ◽  
Training Programs ◽  
Healthcare Research ◽  
Lessons Learned ◽  
Effectiveness Research ◽  
Patient Centered ◽  
Experiential Training ◽  
Number Of Publications

A number of publications have discussed approaches to training the scientific workforce in comparative effectiveness research (CER) and patient-centered outcomes research (PCOR). To meet this need, funders have offered resources for developing educational materials and establishing training programs. To extend these efforts into specific researcher communities, the Agency for Healthcare Research and Quality developed an R25 Funding Opportunity Announcement that called for basic, advanced, and experiential training for a specific researcher community in collaboration with associated program partners. This paper describes the strategies developed by the 5 subsequently funded programs, their specific researcher communities and program partners, and the challenges associated with developing in-person and online programs. We focus on lessons learned that can be translated into developing training programs nationwide and on training for the special populations of interest. We also discuss the creation of a sustainable network for training and the conduct of comparative effectiveness research/patient-centered outcomes research in targeted communities.

scholarly journals Ethical Challenges and Lessons Learned During the Clinical Development of a Group A Meningococcal Conjugate Vaccine

2015 ◽  
Vol 61 (suppl_5) ◽  
pp. S422-S427 ◽  
Author(s):  
Lionel Martellet ◽  
Samba O. Sow ◽  
Aldiouma Diallo ◽  
Abraham Hodgson ◽  
Beate Kampmann ◽  
...  
Keyword(s):  
Conjugate Vaccine ◽  
Clinical Development ◽  
Lessons Learned ◽  
Ethical Challenges ◽  
Group A

A Blueprint for the Conduct of Large, Multi-Site Trials in Telemedicine (Preprint)

2021 ◽  
Author(s):  
Patricia Commiskey ◽  
April W Armstrong ◽  
Tumaini Rucker Coker ◽  
Earl Ray Dorsey ◽  
John Fortney ◽  
...  
Keyword(s):  
Skin Diseases ◽  
Care Delivery ◽  
Mental Healthcare ◽  
Stroke Care ◽  
Lessons Learned ◽  
Patient Centered ◽  
Implementation Challenges ◽  
Home Based ◽  
Family Based ◽  
Key Aspects

BACKGROUND Recent literature supports the efficacy and efficiency of telemedicine in improving various health outcomes, despite the wide variability in results. OBJECTIVE Understanding site-specific issues in the implementation of telemedicine trials for broader replication and generalizability of results is needed. Lessons can be learned from existing trials, and a blueprint can guide researchers to conduct these challenging studies using telemedicine more efficiently and effectively. METHODS This viewpoint presents relevant challenges and solutions for conducting multi-site telemedicine trials using seven ongoing and completed studies funded by the Patient Centered Outcomes Research Institute (PCORI) portfolio of large multi-site trials to highlight the challenges in implementing telemedicine trials. RESULTS Implementation challenges related to clinical, informatics, regulatory, legal, quality and billing were identified and described. CONCLUSIONS Lessons learned from these studies were used to create a blueprint of key aspects to consider for the design and implementation of multi-site telemedicine trials. CLINICALTRIAL NCT02358135: Improving Specialty-Care Delivery in Chronic Skin Diseases (PI: AWArmstrong) NCT02396576: Using Telehealth to Deliver Developmental, Behavioral, and Mental Health Services in Primary Care Settings for Children in Underserved Areas (PI: TRCoker) NCT02038959: Connect.Parkinson (PI: RDorsey) NCT04000971: C3FIT (Coordinated, Collaborative, Comprehensive, Family-based, Integrated, Technology-enabled Care) Stroke Care Trial (PI: KGaines) NCT03694431: Noninferiority Comparative Effectiveness Trial of Home-Based Palliative Care (HomePal) Trial (PI: HNguyen, KMularski) NCT04153864: SUMMIT (Scaling Up Maternal Mental healthcare by Increasing access to Treatments) Trial (PI: DRSingla) NCT03985800: Specialty Medical Homes to Improve Outcomes for Patients with Inflammatory Bowel Disease (IBD) and Behavioral Health Conditions Trial (PI: ESzigethy)

scholarly journals Patient Centered Medical Home transformation at an academic medical center

2015 ◽  
Vol 5 (1) ◽  
pp. 34
Author(s):  
Randy Wexler ◽  
Jennifer Lehman ◽  
Mary Jo Welker
Keyword(s):  
Family Medicine ◽  
Patient Outcomes ◽  
Medical Home ◽  
Medical Center ◽  
Academic Medical Center ◽  
Lessons Learned ◽  
Patient Centered Medical Home ◽  
Model Of Care ◽  
Patient Centered ◽  
Academic Medical

Background: Primary care is playing an ever increasing role in the design and implementation of new models of healthcare focused on achieving policy ends as put forth by government at both the state and federal level. The Patient Centered Medical Home (PCMH) model is a leading design in this endeavor.Objective: We sought to transform family medicine offices at an academic medical center into the PCMH model of care with improvements in patient outcomes as the end result.Results: Transformation to the PCMH model of care resulted in improved rates of control of diabetes and hypertension and improved prevention measures such as smoking cessation, mammograms, Pneumovax administration, and Tdap vaccination. Readmission rates also improved using a care coordination model.Conclusions: It is possible to transform family medicine offices at academic medical centers in methods consistent with newer models of care such as the PCMH model and to improve patient outcomes. Lessons learned along the way are useful to any practice or system seeking to undertake such transformation.

scholarly journals Using Mobile Phones to Collect Patient Data: Lessons Learned From the SIMPle Study

2017 ◽  
Vol 6 (4) ◽  
pp. e61 ◽  
Author(s):  
Sinead Duane ◽  
Meera Tandan ◽  
Andrew W Murphy ◽  
Akke Vellinga
Keyword(s):  
Mobile Phones ◽  
Patient Data ◽  
Lessons Learned ◽  
Collect Patient Data

The Patient-Centered Medicine as the Theoretical Framework for Patient Engagement

2016 ◽  
pp. 25-39 ◽  
Author(s):  
Borghi Lidia ◽  
Galli Federica ◽  
Vegni Elena Anna Maria
Keyword(s):  
Patient Engagement ◽  
Theoretical Framework ◽  
Medical Epistemology ◽  
Patient Centeredness ◽  
Patient Centered ◽  
Present Contribution ◽  
Patient Centered Medicine ◽  
Chronic Disorders ◽  
Theoretical Frame

The present contribution will describe the origin, development and main characteristics of the patient-centered medicine; the literature on patient-centeredness, in particular in the field of chronic disorders, will be discussed and the importance of this approach underlined; arguments about the importance of patient-centered medicine as theoretical frame founding and supporting the concept of patient engagement will be highlighted, considering that only within this medical epistemology the patient's engagement can find a full and complete expression.

BIM Based Design Management of a Building Project Collaboratively Designed With a Foreign Design Firm in China

2019 ◽  
pp. 902-927
Author(s):  
Algan Tezel ◽  
Zeeshan Aziz ◽  
Chuxiong Jiang
Keyword(s):  
Building Design ◽  
Lessons Learned ◽  
Design Management ◽  
Construction Market ◽  
Stakeholder Perspectives ◽  
Building Information ◽  
The Usa ◽  
Complex Building ◽  
Design Firms ◽  
Building Project

In parallel with China's growing construction market, there has been an influx of foreign architectural and engineering design firms into the Chinese construction market. Those firms generally form partnerships with local Chinese firms or institutions to overcome various complications in the country. Adding to the complexity, relatively recent technologies such as Building Information Modelling (BIM) also started to play a role in those collaborative project design management efforts in China. This paper presents an in-depth case study of a complex building design project collaboratively executed using BIM by a foreign design firm from the USA and local Chinese firm in China. The project was analysed from different design management and stakeholder perspectives. Some of the findings confirm the pervious accounts from the literature. New insights and the key lessons learned for BIM based design management in this context are also presented.

scholarly journals BIM based Design Management of a Building Project Collaboratively Designed with a Foreign Design Firm in China

2016 ◽  
Vol 5 (2) ◽  
pp. 16-38 ◽  
Author(s):  
Algan Tezel ◽  
Zeeshan Aziz ◽  
Chuxiong Jiang
Keyword(s):  
Building Design ◽  
Lessons Learned ◽  
Design Management ◽  
Construction Market ◽  
Chinese Firm ◽  
Stakeholder Perspectives ◽  
Building Information ◽  
The Usa ◽  
Complex Building ◽  
Design Firms

In parallel with China's growing construction market, there has been an influx of foreign architectural and engineering design firms into the Chinese construction market. Those firms generally form partnerships with local Chinese firms or institutions to overcome various complications in the country. Adding to the complexity, relatively recent technologies such as Building Information Modelling (BIM) also started to play a role in those collaborative project design management efforts in China. This paper presents an in-depth case study of a complex building design project collaboratively executed using BIM by a foreign design firm from the USA and local Chinese firm in China. The project was analysed from different design management and stakeholder perspectives. Some of the findings confirm the pervious accounts from the literature. New insights and the key lessons learned for BIM based design management in this context are also presented.

scholarly journals Implementation of Care Management: An Analysis of Recent AHRQ Research

2016 ◽  
Vol 75 (1) ◽  
pp. 46-65 ◽  
Author(s):  
Andrada Tomoaia-Cotisel ◽  
Timothy W. Farrell ◽  
Leif I. Solberg ◽  
Carolyn A. Berry ◽  
Neil S. Calman ◽  
...  
Keyword(s):  
Care Management ◽  
Healthcare Research ◽  
Successful Implementation ◽  
Framework Analysis ◽  
Patient Centered ◽  
Medical Homes ◽  
Contextual Variation ◽  
Context Specific ◽  
The Right ◽  
Specific Implementation

Care management (CM) is a promising team-based, patient-centered approach “designed to assist patients and their support systems in managing medical conditions more effectively.” As little is known about its implementation, this article describes CM implementation and associated lessons from 12 Agency for Healthcare Research and Quality–sponsored projects. Two rounds of data collection resulted in project-specific narratives that were analyzed using an iterative approach analogous to framework analysis. Informants also participated as coauthors. Variation emerged across practices and over time regarding CM services provided, personnel delivering these services, target populations, and setting(s). Successful implementation was characterized by resource availability (both monetary and nonmonetary), identifying as well as training employees with the right technical expertise and interpersonal skills, and embedding CM within practices. Our findings facilitate future context-specific implementation of CM within medical homes. They also inform the development of medical home recognition programs that anticipate and allow for contextual variation.

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