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'A Commitment to Equality, Diversity and Inclusion': A Conceptual Framework for Equality of Opportunity in Patient and Public Involvement in Research
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Sapfo Lignou; Mark Sheehan; Ilina Singh – Research Ethics, 2024
Many research institutions and funders have recently stated their commitment to actively support and promote 'Equality, Diversity and Inclusion' (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that…
Descriptors: Foreign Countries, Medical Research, Patients, Inclusion
Deception and Informed Consent in Studies with Incognito Simulated Standardized Patients: Empirical Experiences and a Case Study from South Africa
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Daniels, Benjamin; Boffa, Jody; Kwan, Ada; Moyo, Sizulu – Research Ethics, 2023
Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method's increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of…
Descriptors: Deception, Informed Consent, Simulation, Patients
Trust Trumps Comprehension, Visceral Factors Trump All: A Psychological Cascade Constraining Informed Consent to Clinical Trials: A Qualitative Study with Stable Patients
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Rost, Michael; Nast, Rebecca; Elger, Bernice S.; Shaw, David – Research Ethics, 2021
This paper addresses psychological factors that might interfere with informed consent on the part of stable patients as potential early-phase clinical trial participants. Thirty-six semistructured interviews with patients who had either diabetes or gout were conducted. We investigated stable patients' attitudes towards participating in a…
Descriptors: Patients, Medical Research, Informed Consent, Psychological Patterns
To CAG or Not to CAG? Difficulties in Determining Submission to the Confidentiality Advisory Group: A Commentary
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Ranieri, V.; Stynes, H.; Kennedy, E. – Research Ethics, 2021
The Confidentiality Advisory Group (CAG) is a specialised body that advises the Health Research Authority (HRA) and the Secretary of State for Health on requests for access to confidential information, in the absence of informed consent from its owners. Its primary role is to oversee the safe use of such information and to counsel the governing…
Descriptors: Foreign Countries, Advisory Committees, Confidentiality, Access to Information
Addressing Dissociative Trance Disorder Patients in India: An Interpretative Phenomenological Analysis of Adolescent Girls' Help-Seeking and Encounters with Inaccurate Medical Information
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Devendra Kumar Singh Varshney; Manju Agrawal; Rakesh Kumar Tripathi – Journal of Applied Research on Children, 2022
Background: Dissociative Trance Disorder (DTD), is a complex psychological condition characterized by abrupt trance-like states and altered consciousness, commonly seen in young women throughout various regions of India. Currently, there is a lack of research on the experiences of Indian adolescent girls with DTD and how inaccurate medical…
Descriptors: Foreign Countries, Adolescents, Females, Mental Disorders
Patient Perspectives on Research Use of Residual Biospecimens and Health Information: On the Necessity of Obtaining Societal Consent by Creating a Governance Structure Based on Value-Sharing
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Yamanaka, Mayumi; Suzuki, Mika; Sato, Keiko – Research Ethics, 2021
Very few attempts have been made to survey patient opinions, particularly regarding the use of residual biospecimens and health information in research, to clarify their values. We conducted a questionnaire survey that targeted outpatients of a university hospital to gauge their awareness levels and understand patient perspectives on research that…
Descriptors: Patients, Researchers, Medical Research, Information Utilization
On-Site Monitoring of Clinical Trials by an Ethics Committee in India: A Road Less Travelled
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Shafiq, Nusrat; Kumari, Savita; Kumar, Vivek; Suri, Vinita; Jayashree, Muralidharan; Duseja, Ajay; Bansal, Arun; Malhotra, Samir – Research Ethics, 2021
Monitoring of clinical trials is important to ensure adherence to protocol, to safeguard the rights of research participants and to achieve compliance with principles of good clinical practice. Recent regulatory changes in India require Ethics Committees to keep an oversight of ongoing clinical trials including on-site monitoring. In this article,…
Descriptors: Ethics, Medical Research, Outcomes of Treatment, Foreign Countries
Mental Capacity to Consent to Research? Experiences of Consenting Adults with Intellectual Disabilities and/or Autism to Research
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Hamilton, Jahnese; Ingham, Barry; McKinnon, Iain; Parr, Jeremy R.; Tam, Louise Yuen-Chong; Le Couteur, Ann – British Journal of Learning Disabilities, 2017
Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their…
Descriptors: Adults, Intellectual Disability, Cognitive Ability, Informed Consent
Stroke Investigative Research and Education Network: Community Engagement and Outreach within Phenomics Core
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Jenkins, Carolyn; Arulogun, Oyedunni Sola; Singh, Arti; Mande, Aliyu T.; Ajayi, Eric; Benedict, Calys Tagoe; Ovbiagele, Bruce; Lackland, Daniel T.; Sarfo, Fred Stephen; Akinyemi, Rufus; Akpalu, Albert; Obiako, Reginald; Melikam, Enzinne Sylvia; Laryea, Ruth; Shidali, Vincent; Sagoe, Kwamena; Ibinaiye, Philip; Fakunle, Adekunie Gregory; Owolabi, Lukman F.; Owolabi, Mayowa O. – Health Education & Behavior, 2016
Stroke is the leading cause of neurological hospital admissions in sub-Saharan Africa (SSA) and the second leading cause of death globally. The Stroke Investigative Research and Education Network [SIREN] seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams…
Descriptors: Foreign Countries, Neurological Impairments, Medical Research, Health Education
The Human Rights Context for Ethical Requirements for Involving People with Intellectual Disability in Medical Research
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Iacono, T.; Carling-Jenkins, R. – Journal of Intellectual Disability Research, 2012
Background: The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and…
Descriptors: Guidelines, Civil Rights, Ethics, Foreign Countries
Patient and Public Involvement in Research in the English NHS: A Documentary Analysis of the Complex Interplay of Evidence and Policy
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Evans, David – Evidence & Policy: A Journal of Research, Debate and Practice, 2014
The last 20 years have seen significant international shifts towards greater patient and public involvement (PPI) in health research and development (R and D). In England, then first health R and D strategy in 1991 did not mention PPI. Twenty years later, PPI is deeply embedded within the National Institute for Health Research. This article…
Descriptors: Patients, Public Opinion, Community Involvement, Medical Research