A Turn Toward Caring Research: Iterative Consent, Reflexive Multilingual Methods, and Reciprocal Knowledge Production
Olivia Orosco
The Professional Geographer, 7 October 2024
Abstract
The discipline of geography continues to redress historically violent methods and move toward a more ethical and intentional research practice, one hopes. Derived from research with professional immigrant Latina caregivers during the first years of the COVID-19 pandemic (2021–2022), this article offers a reflective approach to the growing conversation of more intentional geographical methods. Learning from feminist and Indigenous methodologies as intertwining, this project takes reciprocity and accountability to and with the caregivers seriously. The research combines artistic portraiture and ethnographic methods to center caregivers as knowledge creators deserving of respect, attention, and artistic portrayal. Collaborative portraits, created by BIPOC artists, were part of the fifteen semistructured testimonio conversations and allowed the tangible centering of caregivers as people to be seen and heard. Learning from the caregivers themselves and through reflective work on methods, this article theorizes a process of iterative consent, multilingual methods, and reciprocal knowledge production and asks what a more ethical and accountable research partnership can and should look like.
Month: November 2024
Online cognitive assessments in elderly cohorts – the British 1946 birth cohort case study
Online cognitive assessments in elderly cohorts – the British 1946 birth cohort case study
Ziyuan Cai, Valentina Giunchiglia, Rebecca Street, Martina Del Giovane, Kirsty Lu, Maria Popham, Andrew Wong, Heidi Murray-Smith, Marcus Richards, Sebastian Crutch, Peter J. Hellyer, Jonathan M Schott, Adam Hampshire
medRxiv, 12 October 2024
This article is a preprint and has not been peer-reviewed. It reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice.
Abstract
Introduction
Online assessments are scalable and cost-effective for detecting cognitive changes, especially in elderly cohorts with limited mobility and higher vulnerability to neurological conditions. However, determining the uptake, adherence, and usability of these assessments in older adults, who may have less experience with mobile devices is crucial.
Methods
1,776 members (aged 77) of the MRC National Survey of Health and Development (NSHD) [UK] were invited to complete 13 online cognitive tasks. Adherence was measured through task compliance, while uptake (consent, attempt, completion) was linked to health and sociodemographic factors. Usability was evaluated through qualitative feedback.
Results
This study’s consent (56.9%), attempt (80.5%), and completion (88.8%) rates are comparable to supervised NSHD sub-studies. Significant predictors of uptake included education, sex, handedness, cognitive scores, weight, smoking, alcohol consumption, and disease burden.
Discussion
With key recommendations followed, online cognitive assessments are feasible, with good adherence, and usability in older adults.
Patients’ Perceptions and Understanding of Pre-operative Informed Consent in a Tertiary Care Setting- Dar-es-salaam
Patients’ Perceptions and Understanding of Pre-operative Informed Consent in a Tertiary Care Setting- Dar-es-salaam
Research Article
Steven Michael, Willbroad Kyejo, Allyzain Ismail, Eric Aghan, Columba Mbekenga, Athar Ali
BMC Medical Ethics, 11 October 2024
Abstract
Background
Informed consent, grounded in the ethical principle of autonomy, represents a patient’s agreement to undergo a procedure. Given its critical role in protecting human rights and autonomy, obtaining informed consent before any surgery or procedure is now a mandatory practice. However, many studies question whether informed consent is conducted genuinely, ensuring proper understanding of the information disclosed, or merely serves as a medico-legal formality. This has led to increased malpractice, misunderstanding, anxiety, and overall postoperative dissatisfaction.
Methods
This descriptive qualitative study was conducted at Aga Khan Hospital using individual in-depth interviews. Fourteen patients who had undergone elective surgery were recruited. Baseline data were presented in tables, and inductive thematic analysis was used to interpret the qualitative data.
Results
Seven themes emerged from the data: Consent as a legal formality, autonomy and decision-making, insufficient information, time constraints and lack of opportunities for questions, use of medical jargon, patients’ desired information, and overall satisfaction with care. Despite patients’ higher levels of education and the hospital’s patient-centered care approach, many felt the information provided was insufficient, superficial, and difficult to understand.
Conclusion
The study found a significant gap between the information patients desired and what was provided. Insufficient information, coupled with the use of medical jargon and time constraints, adversely affected the informed consent process. Enhancing clarity in communication and allowing adequate time for discussions could improve patient understanding and satisfaction.
Towards Personal Data Sharing Autonomy: A Task-driven Data Capsule Sharing System
Towards Personal Data Sharing Autonomy: A Task-driven Data Capsule Sharing System
Qiuyun Lyu, Yilong Zhou, Yizhi Ren, Zheng Wang, Yunchuan Guo
arXiv, August 2024
Abstract
Personal data custodian services enable data owners to share their data with data consumers in a convenient manner, anytime and anywhere. However, with data hosted in these services being beyond the control of the data owners, it raises significant concerns about privacy in personal data sharing. Many schemes have been proposed to realize fine-grained access control and privacy protection in data sharing. However, they fail to protect the rights of data owners to their data under the law, since their designs focus on the management of system administrators rather than enhancing the data owners’ privacy. In this paper, we introduce a novel task-driven personal data sharing system based on the data capsule paradigm realizing personal data sharing autonomy. It enables data owners in our system to fully control their data, and share it autonomously. Specifically, we present a tamper-resistant data capsule encapsulation method, where the data capsule is the minimal unit for independent and secure personal data storage and sharing. Additionally, to realize selective sharing and informed-consent based authorization, we propose a task-driven data sharing mechanism that is resistant to collusion and EDoS attacks. Furthermore, by updating parts of the data capsules, the permissions granted to data consumers can be immediately revoked. Finally, we conduct a security and performance analysis, proving that our scheme is correct, sound, and secure, as well as revealing more advantageous features in practicality, compared with the state-of-the-art schemes.
Symposia/Conferences/Webinars
SYMPOSIA/CONFERENCES/WEBINARS
We will selectively include information on major symposia and conferences which address issues, evidence, analysis or debates involving consent/assent. This listing will include [1] meetings already concluded but which are posting presentations/recordings, etc.; [2] future meetings which have posted registration/logistics information, and [3] meetings which have announced calls for abstracts/panels, etc.
Patient-Centered Informed Consent in Clinical Study of FDA-Regulated Medical Products
FDA Patient Engagement Advisory Committee Meeting
Webinar: October 30, 2024
Video recording: [7:13] https://www.youtube.com/live/Th3fkIpi3vc
AGENDA:
On October 30, 2024, the Committee discussed and made recommendations on “Patient-Centered Informed Consent in Clinical Study of FDA-Regulated Medical Products.”
The individuals who volunteer to participate in clinical research play an integral role in advancing scientific knowledge and supporting the development of potentially life-saving therapies for patients in need. Informed consent is a key element in clinical studies and can be one of a patient’s first interactions with the clinical community. Too often, however, informed consent forms are lengthy and difficult for potential research participants to understand. FDA has worked to improve informed consent over the years, including several recent activities such as developing a draft guidance in identifying key information in informed consent.
The Committee will provide recommendations on the informed consent process and the areas of focus of the informed consent. The Committee will also provide recommendations on factors to consider when communicating informed consent to clinical study participants to increase the likelihood of participants understanding the key elements of research. FDA intends to make background material available to the public no later than 2 business days before the meeting. If FDA is unable to post the background material on its website prior to the meeting, the background material will be made publicly available on FDA’s website at the time of the advisory committee meeting, and the background material will be posted on FDA’s website after the meeting.
Background material and the link to the online teleconference and/or video conference meeting are available at https://www.fda.gov/AdvisoryCommittee….
Briefing Documents providing further information:
Center for Informed Consent Integrity 