Bioethics and Medical Ethics Commons^™

Patient Perspectives On The Use Of Artificial Intelligence In Health Care: A Scoping Review, Sally Moy, Mona Irannejad, Stephanie Jeanneret Manning, Mehrdad Farahani, Yomna Ahmed, Ellis Gao, Radhika Prabhune, Suzan Lorenz, Raza Mirza, Christopher Klinger

Journal of Patient-Centered Research and Reviews

Purpose

Artificial intelligence (AI) technology is being rapidly adopted into many different branches of medicine. Although research has started to highlight the impact of AI on health care, the focus on patient perspectives of AI is scarce. This scoping review aimed to explore the literature on adult patients’ perspectives on the use of an array of AI technologies in the health care setting for design and deployment.

Methods

This scoping review followed Arksey and O'Malley’s framework and Preferred Reporting Items for Systematic Reviews and Meta-Analysis for Scoping Reviews (PRISMA-ScR). To evaluate patient perspectives, we conducted a comprehensive literature search using …

Patients And Families As Partners In Patient-Oriented Research: How Should They Be Compensated?, Monika Novak-Pavlic, Jan Willem Gorter, Michelle P. Phoenix, Samantha K. Micsinszki, Kinga Pozniak, Lin Li, Linda Nguyen, Alice K. Soper, Elaine Yuen Ling Kwok, Jael N. Bootsma, Francine Buchanan, Hanae Davis, Sandra Abdel Malek, Karen M. Van Meeteren, Peter L. Rosenbaum

Journal of Patient-Centered Research and Reviews

Patient and family engagement has become a widely accepted approach in health care research. We recognize that research conducted in partnership with people with relevant lived experience can substantially improve the quality of that research and lead to meaningful outcomes. Despite the benefits of patient-researcher collaboration, research teams sometimes face challenges in answering the questions of how patient and family research partners should be compensated, due to the limited guidance and lack of infrastructure for acknowledging partner contributions. In this paper, we present some of the resources that might help teams to navigate conversations about compensation with their patient and …

Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar For Study Of Rare Disease Populations, Rebecca Baines, Sebastian Stevens, Zainab Garba-Sani, Arunangsu Chatterjee, Daniela Austin, Simon Leigh

Journal of Patient-Centered Research and Reviews

Purpose: Rare conditions are often poorly understood, creating barriers in determining the value treatments can provide. This study explored barriers and facilitators to personal health data sharing among those with one particular group of rare hematologic disorders, ie, sickle cell disorder (SCD) and its variants.

Methods: A single online focus group among those > 18 years of age and living with SCD was conducted. Participants (N = 25) were recruited through a United Kingdom-based SCD charity. Discussions were transcribed verbatim, with data therein analyzed using inductive thematic analysis.

Results: Five primary motivators for sharing health data were identified: improving awareness; knowing …

Should Health Systems Share Genetic Findings With At-Risk Relatives When The Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome, Jessica Ezzell Hunter, Jennifer L. Schneider, Alison J. Firemark, James V. Davis, Sara Gille, Pamala A. Pawloski, Su-Ying Liang, Victoria Schlieder, Alanna Kulchak Rahm

Journal of Patient-Centered Research and Reviews

Purpose: Genetic information has health implications for patients and their biological relatives. Death of a patient before sharing a genetic diagnosis with at-risk relatives is a missed opportunity to provide important information that could guide interventions to minimize cancer-related morbidity and mortality in relatives.

Methods: We performed semi-structured interviews with individuals diagnosed with Lynch syndrome at 1 of 4 health systems to explore their perspectives on whether health systems should share genetic risk information with relatives following a patient’s death. An inductive, open-coding approach was used to analyze audio-recorded content, with software-generated code reports undergoing iterative comparative analysis by a …

Cross-Sectional Analysis Of Patient-Centered Language Use In Journals Publishing Research Focused On Heart Failure, Vivian Pham, Benjamin Greiner, Ryan Ottwell, Matt Vassar, Micah L. Hartwell

Journal of Patient-Centered Research and Reviews

Purpose: Detrimental effects of using non–patient-centered language (nPCL) have been reported for diabetes, mental illness, and obesity, and both the American Medical Association (AMA) and International Committee of Medical Journal Editors (ICMJE) recommend using patient-centered language in medical literature. Heart failure is a common yet stigmatized disease, and nPCL may further propagate stigma. This study analyzed current use of nPCL in journals focused on heart failure research and also examined whether the journals steer authors to adhere to AMA or ICMJE guidelines regarding nPCL.

Methods: Following systematic search of PubMed for heart failure-related articles published from May 1, 2018, to …

Financial Conflicts Of Interest Change After A High-Impact Clinical Trial Publication In Oncology, Craig L. Cambridge, Emily Stern Gatof, Glen J. Weiss, Roger B. Davis

Journal of Patient-Centered Research and Reviews

Purpose: Because financial conflicts of interest (FCOIs) may potentially influence patient care, hospital drug formularies, and treatment guidelines, it is important that these are disclosed. The purpose of this observational study was to quantify the changes in FCOI among U.S.-based academic authors in industry-sponsored oncology trials after a high-impact publication.

Methods: A list of all U.S.-based academic authors (authors) of industry-sponsored solid tumor clinical trials published between August 1, 2014, and December 31, 2015, in 6 high-impact journals (New England Journal of Medicine, Nature, Science, Lancet Oncology, Journal of Clinical Oncology, and Cancer Discovery) was assembled. Studies were limited to …

Surgeons’ Views On Shared Decision-Making, Suraj Kannan, Jayhyun Seo, Kevin R. Riggs, Gail Geller, Emily F. Boss, Zackary D. Berger

Journal of Patient-Centered Research and Reviews

Purpose: Shared decision-making (SDM) has a significant role in surgical encounters, where decisions are influenced by both clinician and patient preferences. Herein, we sought to explore surgeons’ practices and beliefs about SDM.

Methods: We performed a qualitative study consisting of semi-structured individual interviews with 18 surgeons from private practice and academic surgery practices in Baltimore, Maryland. We purposively sampled participants to maximize diversity of practice type (academic vs private), surgical specialty, gender, and experience level. Interview topics included benefits and challenges to patient involvement in decision-making, communicating uncertainty to patients, and use of decision aids. Interviews were audio-recorded and transcribed. …

Confidential Care For Adolescents In The U.S. Health Care System, Priya R. Pathak, Adriana Chou

Journal of Patient-Centered Research and Reviews

In providing care for adolescents, maintaining confidentiality should be considered a human right and an evidence-based component of quality care. Unfortunately, complexities in the U.S. legal and health care systems have created a setting in which confidential care is inaccessible to many adolescent patients. Federal laws provide a minimum standard for confidentiality protections, but variations in state legislation relating to minor consent, special health care services, and confidentiality exemptions create large variability in adolescent confidentiality rights across the country. In certain contexts, such as consensual sexual activity, legal provisions may not align with professional ethical standards in adolescent care. In …

Practice-Based Research Networks Ceding To A Single Institutional Review Board, Jeanette M. Daly, Tabria Weiner Harrod, Kate Judge, Leann C. Michaels, Barcey T. Levy, David L. Hahn, Lyle J. Fagnan, Donald E. Nease Jr.

Journal of Patient-Centered Research and Reviews

Historically, a single research project involving numerous practice-based research networks (PBRNs) required multiple institutional review boards (IRBs) to be involved in approval of the project. However, to avoid redundancies, federal IRB regulations now allow cooperative research projects that involve more than one institution to use reasonable methods of cooperative IRB review and to cede authority for review and oversight of the project to a single lead IRB. Through ceding, a lead IRB has the authority for review and oversight of the project delegated by all participating sites’ IRBs and becomes the IRB of record for the ceded sites. In the …

Multiracial Patient Experiences With Racial Microaggressions In Health Care Settings, Cyndy R. Snyder, Prince Z. Wang, Anjali R. Truitt

Journal of Patient-Centered Research and Reviews

Purpose: Illuminating patients’ experiences of microaggressions in health care settings can help practitioners develop care that is more culturally responsive. While much of the literature on health care disparities focuses on minority groups generally, we sought to identify and to describe the ways in which racial microaggressions manifest for multiracial individuals and families specifically.

Methods: Using a combination of interviews and focus groups, we conducted 15 interviews and 3 focus groups. Eligible participants self-identified as more than one race and/or they self-identified as part of an interracial family, and they and/or someone they considered to be part of their family …

Patients Are Our Teachers, Robert E. Becker, Mary V. Seeman

Journal of Patient-Centered Research and Reviews

In the patient-physician encounter, physicians hone their skills while alleviating the patient’s suffering. Both benefit. Leaning on the work of Hippocrates, Darwin, and William Osler, the authors sketch out the case for honoring patients as indispensable teachers of the art and science of medicine. They argue that this tradition of Hippocratic medicine both anticipates modern precision medicine and reawakens a focus on public health medicine, each a benefit to the patients and communities served by physicians. A community that compromises the learning relationship of physician to patient and population undermines quality of care.

Every Word, Every Gesture, Dennis J. Baumgardner

Journal of Patient-Centered Research and Reviews

Two nonverbal patients teach a novice clinician the power and often hidden impact of the physician-patient relationship.

All The Lonely People, John Brill

Journal of Patient-Centered Research and Reviews

A primary care physician laments the loneliness apparent in many underserved patients and seeks closure in the death of one patient in particular.

One Final Goodbye, Dennis Baumgardner

Journal of Patient-Centered Research and Reviews

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