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 Leveraging Patient/Community Partnerships to Disseminate Patient Centered Outcomes Research in Geriatrics

Geriatrics ◽  
2019 ◽  
Vol 4 (2) ◽  
pp. 35
Author(s):  
Lee A. Lindquist ◽  
Anne Seltzer ◽  
Chris Forcucci ◽  
Norine Wong ◽  
Vanessa Ramirez-Zohfeld
Keyword(s):  
Outcomes Research ◽  
Qualitative Interviews ◽  
Medical Patient ◽  
Community Partnerships ◽  
Lessons Learned ◽  
Future Research ◽  
Community Partner ◽  
Patient Centered ◽  
Community Partners ◽  
Future Researcher

Background: With the growth of patient-centered outcomes research (PCOR), partnerships between researchers and patients have presented novel opportunities for disseminating results. A large gap exists in disseminating patient-centered research results to older adult patient end-users. We sought to examine the experiences of patient/community partners in disseminating PCOR results and characterize lessons learned that may facilitate future researcher-patient/community dissemination partnerships. Methods: Patient/community partners who participated in geriatrics-focused PCORI-funded research and were active in disseminating results, as part of their planned activities, were recruited for one-to-one qualitative interviews. Constant comparative and thematic analysis were used to identify and describe common themes that emerged in a survey of open-ended questions. Results: Ten individuals (four community partners, six patients) aged 55–87 years were interviewed. Analysis revealed that for successful dissemination, subjects felt it was vital to reach out to people affected by the results, leverage personal stories, and tap into pre-developed programming. Patient/Community partners identified potential audiences through word-of-mouth, community requests, and mapping a list of audiences—targeting those directly affected as well as those who worked with the audience (e.g., not specifically medical). Patient/community partners recommended that researchers engage patient/community partners for suggestions on audiences, show empathy, include diverse populations, and maintain a community-focus. One community partner stated, “Why wouldn’t we help disseminate results? It’s a no-brainer. We know people!” Conclusion: Patient/community partners provide effective ways to communicate results, new audiences to reach, improved communication with different audiences, and improved credibility of the findings. The lessons learned have implications for assisting future research-patient/community partnerships in the dissemination of their patient-centered research.

Lessons Learned: Beta-testing the Digital Health Checklist for Researchers (DHC-R) Prompts a Call to Action by Behavioral Scientists (Preprint)

2020 ◽  
Author(s):  
Rebecca Bartlett Ellis ◽  
Julie Wright ◽  
Lisa Soederberg Miller ◽  
Danielle Jake-Schoffman ◽  
Eric Hekler ◽  
...  
Keyword(s):  
Health Research ◽  
Policy Development ◽  
Digital Health ◽  
Lessons Learned ◽  
Assessment Process ◽  
Digital Tools ◽  
Future Research ◽  
Research Approach ◽  
Time Data ◽  
Beta Testing

UNSTRUCTURED Digital technologies offer unique opportunities for health research. For example, Twitter posts can support public health surveillance to identify outbreaks (e.g., influenza, COVID-19), and a wearable fitness tracker can provide real-time data collection to assess the effectiveness of a behavior change intervention. With these opportunities comes the responsibility to consider the potential risks and benefits to research participants when using digital tools or strategies. Researchers need to be involved in the risk assessment process, as many tools in the marketplace (e.g. wellness apps, fitness sensors) are under-regulated. However, there is little guidance to assist researchers and institutional review boards in their evaluation of digital tools for research purposes. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. A participatory research approach involving a group of behavioral scientists was used to inform the DHC-R development. These scientists beta-tested the checklist by retrospectively evaluating technologies they had chosen for use in their research. This paper describes the lessons learned as a result of their involvement in the beta testing process and concludes with recommendations for how the DHC-R could be useful for a variety of digital health stakeholders. Recommendations focus on future research and policy development to support research ethics, including development of best practices to advance safe and responsible digital health research.

scholarly journals Applying Engagement Frameworks to Case Scenarios: A Retrospective Analysis

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 789-789
Author(s):  
Erin McGaffigan
Keyword(s):  
Interest Group ◽  
Research Study ◽  
Lessons Learned ◽  
Future Research ◽  
User Engagement ◽  
Ethical Considerations ◽  
Patient Centered ◽  
Factors Influencing ◽  
Creative Solutions ◽  
Study Case

Abstract The LeadingAge LTSS Center @UMass Boston has worked with the Patient-Centered Outcomes Research Institute (PCORI), service recipients, researchers, and providers since 2017 to understand the obstacles and creative solutions for meaningful and effective engagement in research. The LTSS Center’s work has been informed by multiple engagement frameworks, including Dr. McGaffigan’s 2011 PAE Attention Framework, the result of a multi-state, multi-site research study examining the factors to user engagement in Cash & Counseling programs. In this presentation, we will apply the PAE Attention Framework (2011), the PCORI Engagement Rubric (2014), and the NHS INVOLVE Framework (2015) to three research study case scenarios to understand the strategies used, outcomes realized, and factors influencing engagement success. Lessons learned from each and their application to future research will be discussed, including ethical considerations. Part of a symposium sponsored by the Patient/Person Engagement in Research Interest Group.

When the moral tail wags the entrepreneurial dog: the historic case of Trumpet Records

2016 ◽  
Vol 22 (1) ◽  
pp. 2-23 ◽  
Author(s):  
Jack L. Winstead ◽  
Milorad M. Novicevic ◽  
John H. Humphreys ◽  
Ifeoluwa Tobi Popoola
Keyword(s):  
Ethical Decision Making ◽  
Moral Dilemma ◽  
Lessons Learned ◽  
Historical Narrative ◽  
Future Research ◽  
Historical Case Study ◽  
Historical Case ◽  
Content Type ◽  
Moral Accountability ◽  
Personal Character

Purpose – The purpose of this paper is to explore the congruencies and incongruences between the moral and entrepreneurial accountabilities of Lillian McMurry to provide insights for entrepreneurs and entrepreneurship. Ms McMurry was the entrepreneurial force behind the founding of Trumpet Records, a unique, Mississippi Delta Blues record label in the 1950s. Design/methodology/approach – The examination of this historical case study is grounded in the theoretical examination of the tensions between Lillian McMurry’s felt moral and entrepreneurial accountabilities. Using an analytical archival historical method, a narrative explanation of how these tensions influenced the success and, ultimately, the failure of Trumpet Records are developed. Findings – The accounting records highlighted a number of issues hampering the commercial profitability of Trumpet Records. Moreover, the archival and documentary sources examined also proved revealing as to conflicts between Ms McMurry’s personal character and mercantile determination as an entrepreneur. Research limitations/implications – The approach of using analytically structured historical narrative as a research strategy is but one method of explaining the tensions between the moral and entrepreneurial accountabilities of Lillian McMurry. Practical implications – The proponents of virtue ethics suggest that this Aristotelian personal character perspective is more fundamental than traditional, act-oriented consequentialist teleological and deontological ethical decision-making approaches. A perspective of moral accountability exceeding the norm of the obstructionist stance is required to maintain a sound balance between entrepreneurial accountability and moral accountability. Originality/value – This paper adopts a mercantile perspective, using the accounting and related business records of Trumpet Records, to examine the leadership characteristics of Lillian McMurry. Practical lessons learned for entrepreneurs facing the moral dilemma of competing accountabilities and advance questions to spur future research in this area are drawn.

scholarly journals The Sage Resource Project: Readying Researchers to Transform Research through Engagement

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 150-151
Author(s):  
Rebecca Berman ◽  
Jesse Bella ◽  
Margaret Danilovich ◽  
Rachel Lessem
Keyword(s):  
Older Adults ◽  
Stakeholder Engagement ◽  
Lessons Learned ◽  
Future Research ◽  
Patient Centered ◽  
Advisory Boards ◽  
Model Research ◽  
Funded Project ◽  
Services And Supports

Abstract The Sage Model enables engagement of older adults receiving Long Term Services and Supports (LTSS), a group typically excluded in research. This presentation focuses on lessons learned from The Sage Resource Project, a Patient Centered Outcomes Research Institute funded project. We collaborated with RCMAR and Roybal centers to encourage NIH-affiliated researchers to embrace stakeholder engagement through promotion of the Sage Model. Few studies include an assessment of researcher needs when it comes to stakeholder engagement. We conducted a needs assessment (n=103) finding <50% of researchers presented work to older adults and only 41% interacted with older adults receiving LTSS. However, >90% were likely to attend webinars to learn more. Additionally, 70% of respondents were interested in setting up their own Sage Model research advisory boards. We identify opportunities for transforming LTSS research by including older adults as well as directions for future research on engagement, based on researchers’ identified needs.

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.

Ethical Issues in Clinical Psychology

2010 ◽  
pp. 183-210
Author(s):  
Kenneth S. Pope
Keyword(s):  
Clinical Psychology ◽  
Ethical Decision ◽  
Ethical Decision Making ◽  
Ethical Issues ◽  
American Psychological Association ◽  
Future Research ◽  
Ethical Problems ◽  
Basic Assumptions ◽  
Ethics Code ◽  
Canadian Psychological Association

This chapter examines how ethical issues are approached differently by two prominent psychological associations, how they are encountered by psychologists, the formal complaints they give rise to, and how they can be approached systematically to avoid missteps. Included are basic assumptions about ethics; the unique approaches to developing a ethics code taken by the American Psychological Association (APA) and the Canadian Psychological Association (CPA), and what each of these two codes provides; empirical data about what ethical problems psychologists encounter and what formal complaints they face; four major sets of ethical issues that are particularly complex and challenging (confidentiality, informed consent, competence, and boundaries); an area of major controversy (clinical psychology and national security); steps in ethical decision-making; and four possible lines of future research.

scholarly journals Wastewater Surveillance for SARS-CoV-2 on College Campuses: Initial Efforts, Lessons Learned, and Research Needs

2021 ◽  
Vol 18 (9) ◽  
pp. 4455
Author(s):  
Sasha Harris-Lovett ◽  
Kara L. Nelson ◽  
Paloma Beamer ◽  
Heather N. Bischel ◽  
Aaron Bivins ◽  
...  
Keyword(s):  
Information Needs ◽  
Community Dynamics ◽  
The United States ◽  
Lessons Learned ◽  
Future Research ◽  
Private Institutions ◽  
Community Members ◽  
Public And Private ◽  
College And University ◽  
University Systems

Wastewater surveillance for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is an emerging approach to help identify the risk of a coronavirus disease (COVID-19) outbreak. This tool can contribute to public health surveillance at both community (wastewater treatment system) and institutional (e.g., colleges, prisons, and nursing homes) scales. This paper explores the successes, challenges, and lessons learned from initial wastewater surveillance efforts at colleges and university systems to inform future research, development and implementation. We present the experiences of 25 college and university systems in the United States that monitored campus wastewater for SARS-CoV-2 during the fall 2020 academic period. We describe the broad range of approaches, findings, resources, and impacts from these initial efforts. These institutions range in size, social and political geographies, and include both public and private institutions. Our analysis suggests that wastewater monitoring at colleges requires consideration of local information needs, sewage infrastructure, resources for sampling and analysis, college and community dynamics, approaches to interpretation and communication of results, and follow-up actions. Most colleges reported that a learning process of experimentation, evaluation, and adaptation was key to progress. This process requires ongoing collaboration among diverse stakeholders including decision-makers, researchers, faculty, facilities staff, students, and community members.

Keeping Black Girls in School: A Systematic Review of Opportunities to Address Exclusionary Discipline Disparity

2021 ◽  
pp. 215336872098889
Author(s):  
Lynn A. Addington
Keyword(s):  
Systematic Review ◽  
Policy Development ◽  
The United States ◽  
Black Girls ◽  
Research Note ◽  
Future Research ◽  
Exclusionary Discipline ◽  
Girls Of Color ◽  
Single Location ◽  
Trauma Informed

A punitive legacy of the responses to school shootings in the United States is the expansion of exclusionary discipline. Black girls have disproportionately experienced this form of punishment as compared to white girls and non-Black girls of color. A small, but growing, body of research has examined the patterns and causes of this disparity. Current studies have made suggestions for possible solutions to address this disparity, but these recommendations are not readily accessible in a single location. A catalogue of these ideas could provide a useful foundation for policy development and evaluation. The present research note seeks to generate this resource by conducting a systematic review to identify and categorize recommendations aimed at reducing the discipline disparity experienced by Black girls. Based on this review, four categories emerged that center around: (1) culturally competent school programs, (2) enhanced teacher training, (3) spaces at school for empowering Black girls, and (4) trauma-informed student policies. This research note discusses these categories of recommendations using an intersectional framework and concludes with a summary of next steps to guide future research and policy work to address the disproportionate use of exclusionary discipline against Black girls.

Staying the distance: Transforming Latin pedagogy at the Open University

2019 ◽  
Vol 18 (1-2) ◽  
pp. 101-128
Author(s):  
Mair E. Lloyd ◽  
James Robson
Keyword(s):  
Cultural Context ◽  
Learning Experience ◽  
New Technology ◽  
Significant Proportion ◽  
Lessons Learned ◽  
Future Research ◽  
Open University ◽  
Ancient Rome ◽  
Positive Effects ◽  
Pedagogical Changes

Abstract Between 2000 and 2013, over 8,000 students studied the module Reading Classical Latin at the Open University, the United Kingdom’s largest distance education provider. But while many learners attained high grades, a significant proportion withdrew from study or failed the module. In 2015, the original module was replaced with a completely new course, Classical Latin: The Language of Ancient Rome. This article details the innovative ways in which new technology and pedagogical theory from Modern Foreign Language (MFL) learning were drawn on by the team designing this new module, resulting in a learning experience which gives greater emphasis to elements such as spoken Latin, the intrinsic pleasure of reading, and cultural context. The (largely positive) effects of these pedagogical changes on student success and satisfaction are subsequently analysed using a rich mix of qualitative and quantitative data. Finally, the authors reflect on lessons learned and the possibilities for future research and enhancement.

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