scholarly journals The participatory turn in health and medicine: The rise of the civic and the need to ‘give back’ in data-intensive medical research

2021 ◽  
Vol 8 (1) ◽  
Author(s):  
Lotje E. Siffels ◽  
Tamar Sharon ◽  
Andrew S. Hoffman
Keyword(s):  
Medical Research ◽  
Individual Responsibility ◽  
Research Participants ◽  
Data Intensive ◽  
Critical Scholarship ◽  
Study Staff ◽  
Medical Researchers ◽  
Orders Of Worth ◽  
Study Participants ◽  
Critical Literature

AbstractWhat has been called the “participatory turn” in health and medicine refers to a general shift from paternalistic and hierarchical, to more collaborative and egalitarian relationships between medical experts and patients/research participants; a shift from what the pragmatic sociologists Boltanski and Thévenot (2006) call a “domestic” to a “civic” order of worth. Critical scholarship on the participatory turn tends to emphasize discrepancies between ideals of equality and empowerment, and practices of increased individual responsibility and disempowerment. In this paper, we depart from this critical literature by suspending evaluation about authentic and inauthentic ideals and practices. Instead, we explore the issues and challenges that arise in the process of ensuring that ideal and practice align in what we call a civic-participatory style of doing medical research. Drawing on interviews and observations carried out with medical researchers, coordinators and assessors in a longitudinal cohort study called the Personalized Parkinson’s Project (PPP), we show that for study staff it is often unclear how they can meet the demands of reciprocity towards research participants that are presupposed by civic-participatory ideals. In particular, in the context of a study whose aim is the creation of a comprehensive dataset comprised of clinical, environmental and lifestyle data that study participants generously “give” over a period of 2 years, we observed a persistent concern on the part of study staff regarding what and how to “give back”. As we show, study staff negotiate and resolve this tension through recourse to creative workarounds and innovative ways of giving back, including frequent project and scientific updates, newsletters, the designation of personal assessors and pampering Event Days. The paper makes a contribution to the critical literature on the participatory turn by showing the utility of the orders of worth framework in probing the challenges and workarounds that emerge in settings where an incumbent style of organizing medical research (here, the 'civic') comes to challenge practices hitherto organized according to a wholly different logic (in this case, the 'domestic')—without making assumptions about the (in)authenticity of such ideals and practices. Moreover, we contend that this framework offers new tools for evaluating participatory research projects in the form of “good” or “successful” civic–domestic compromises.

scholarly journals What do we know about ancillary care practices in East and Southern Africa? A systematic review and meta-synthesis

2021 ◽  
Vol 6 ◽  
pp. 164
Author(s):  
Blessings M. Kapumba ◽  
Nicola Desmond ◽  
Janet Seeley
Keyword(s):  
Medical Research ◽  
Southern Africa ◽  
Data Extraction ◽  
Empirical Studies ◽  
Ethical Practice ◽  
Ethical Guidelines ◽  
Bias Risk ◽  
Medical Researchers ◽  
Ancillary Care ◽  
Study Participants

Background: Despite growing calls for the provision of ancillary care to study participants during medical research, there remains a noticeable gap in ethical guidelines for medical researchers in resource-constrained settings (RCS). We reviewed recent studies to determine the extent to which ancillary care is provided in East and Southern Africa and to examine the ethical justifications researchers provide to support their views on ancillary care obligations. Methods: A systematic search for qualitative and mixed methods studies on ancillary care was conducted across MEDLINE, Embase, African Wide Information, PubMed, CINAHL Plus, and Scopus. The National Institutes of Health (NIH) Department of Bioethics and H3 Africa websites and Google Scholar were further searched. Studies conducted in East and Southern Africa between 2004 and 2020, as well as those that reported on ancillary care provided to study participants were included. All studies included in this review were evaluated for methodological quality as well as bias risk. NVivo version 12 was used for thematic analysis. Results: Overall, 4,710 articles were identified by the initial search. After the data extraction and quality assessment, 24 articles were included. Key areas presented include ancillary care approaches and the themes of researcher motivation for providing ancillary care and expectations of participants in medical research. The review shows that while some international researchers do provide ancillary care to their study participants, approaches are not standardised without consistent guidelines for ethical practice for ancillary care. We found limited empirical studies in RCS that report on ancillary care, hence findings in this review are based on single studies rather than a collection of multiple studies. Conclusions: This paper emphasizes the value of establishing ethics guidelines for medical researchers in RCS who consider provision of ancillary care to their participants, and the need to account for these ethical guidelines in medical research.

scholarly journals Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?

2015 ◽  
Vol 43 (4) ◽  
pp. 827-842
Author(s):  
Anya E.R. Prince ◽  
John M. Conley ◽  
Arlene M. Davis ◽  
Gabriel Lázaro-Muñoz ◽  
R. Jean Cadigan
Keyword(s):  
Medical Record ◽  
Medical Records ◽  
Genomic Research ◽  
Research Results ◽  
Research Participants ◽  
Difficult Question ◽  
Automatic Placement ◽  
Study Participants ◽  
Research Studies

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored.

Is Man the Measure of All Things? A Social Cognitive Account of Androcentrism

2018 ◽  
Vol 23 (4) ◽  
pp. 307-331 ◽  
Author(s):  
April H. Bailey ◽  
Marianne LaFrance ◽  
John F. Dovidio
Keyword(s):  
Medical Research ◽  
Women’S Health ◽  
Women's Health ◽  
Social Cognitive ◽  
Social Power ◽  
Present Review ◽  
Cognitive Perspective ◽  
Research Participants ◽  
Gender Neutral ◽  
Gender Specific

Androcentrism refers to the propensity to center society around men and men’s needs, priorities, and values and to relegate women to the periphery. Androcentrism also positions men as the gender-neutral standard while marking women as gender-specific. Examples of androcentrism include the use of male terms (e.g., he), images, and research participants to represent everyone. Androcentrism has been shown to have serious consequences. For example, women’s health has been adversely affected by over-generalized medical research based solely on male participants. Nonetheless, relatively little is known about androcentrism’s proximate psychological causes. In the present review, we propose a social cognitive perspective arguing that both social power and categorization processes are integral to understanding androcentrism. We present and evaluate three possible pathways to androcentrism deriving from (a) men being more frequently instantiated than women, (b) masculinity being more “ideal” than femininity, and/or (c) masculinity being more common than femininity.

Editor Note Volume 3 Issue 1

2021 ◽  
Author(s):  
Ian James Martins
Keyword(s):  
Animal Models ◽  
Pulmonary Tuberculosis ◽  
Medical Research ◽  
Data Analytics ◽  
Healthcare Professionals ◽  
Scientific Process ◽  
Medical Field ◽  
Medical Researchers ◽  
Research Questions ◽  
High Standards

The articles published in Volume 3, Issue 1 maintain the high standards for peer-reviewed journals. These articles are related to Pulmonary Tuberculosis, Animal Models, COVID-19 vaccines, Dentistry Data Analytics, and the Psychosocial Impact of COVID-19 in children. The effort and expertise of these authors contribute to clinical and medical research and is the cornerstone of the scientific process with relevance to peer-review by medical researchers and healthcare professionals. The research questions in these articles are important and appropriate to the journal and adhere to journal standards and to the top 10% of papers published in the medical field.

Ancillary-Care Obligations

2021 ◽  
Author(s):  
Henry S. Richardson
Keyword(s):  
Human Rights ◽  
Incidental Findings ◽  
Professional Role ◽  
Adequate Account ◽  
Imaging Studies ◽  
Trial Conduct ◽  
Resource Poor ◽  
Medical Researchers ◽  
Ancillary Care ◽  
Study Participants

Medical researchers’ ancillary-care obligations have, until recently, been ignored by the authoritative guidelines on the ethics of medical research. Ancillary care is medical care, often unrelated to what is under study, that is not required by sound science, safe trial conduct, morally optional promises, or redressing research injuries. The question is when medical researchers have moral responsibilities to provide such care if their study participants need it. This question shows up insistently in studies done in resource-poor areas and—as the question of whether to return incidental findings—in genomic and imaging studies. After laying out six desiderata for a fully adequate account of medical researchers’ ancillary-care obligations, this chapter critically evaluates six potential grounds for such obligations—the duty of rescue, human rights, rectificatory justice, professional-role obligations, the researcher–participant relationship, and partial entrustment. It closes by suggesting the possibility of combining two or more of these grounds.

scholarly journals Treatment of established status epilepticus in the elderly - a study protocol for a prospective multicenter double-blind comparative effectiveness trial (ToSEE)

BMC Neurology ◽  
2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Annekatrin Müller ◽  
Anett Schmiedeknecht ◽  
Meinhard Mende ◽  
Carolin Awissus ◽  
Felix Rosenow ◽  
...  
Keyword(s):  
Status Epilepticus ◽  
Comparative Effectiveness ◽  
Treatment Success ◽  
The Elderly ◽  
Double Blind ◽  
Link Type ◽  
Study Staff ◽  
Comparative Effectiveness Study ◽  
Ictal Activity ◽  
Study Participants

Abstract Background Status epilepticus (SE) is a common neurological emergency condition that especially affects the elderly and old population. Older people with SE frequently have non-convulsive SE (NCSE) and are also at special risk of suffering a poor outcome. The application of benzodiazepines fails to control SE in about one third of the cases. For benzodiazepine refractory SE (BRSE) in elderly, there is little evidence that would justify the choice of one of the commonly used antiepileptic drugs. The present study aims to generate evidence for the treatment of BRSE in this age group. Methods We will conduct a prospective, randomized, double-blind comparative effectiveness study in more than twenty hospitals in Germany over a four-year period. Four hundred and seventy-seven elderly patients (≥ 65 years old) diagnosed with BRSE will be allocated by 1:1 randomization to receive either levetiracetam or valproate. All types of SE will be considered. For the diagnosis NCSE a verification by EEG is required. Levetiracetam or valproate will be administered in one single infusion. The primary endpoint is the stable cessation of ictal activity 15 min after the start of infusion persisting for the following 45 min of observation. EEG recording is maintained over the whole observation period, clinical examinations are conducted in predefined intervals. In case of treatment success patients and study staff remain blinded until 60 min after the start of the infusion. Adverse events will be recorded until the end of the study. EEG data will be reviewed by two external independent experts. To obtain data about the further treatment of SE, intrahospital complications and the functional outcome in the short term the study participants will be observed until the day of discharge or day 30 whichever is earliest. Discussion ToSEE is the first study which shall deliver evidence for the SE-therapy in the elderly and old population in a controlled prospective comparator study. By design it also shall collect information about therapy regimes and outcome aspects of this disease. Trial registration The trial has been registered at the German Clinical Trials Register on 3 July, 2020 (DRKS00022308, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00022308).

This isn’t going to end well: Fictional representations of medical research in television and film

2016 ◽  
Vol 26 (5) ◽  
pp. 564-578 ◽  
Author(s):  
Jill A. Fisher ◽  
Marci D. Cottingham
Keyword(s):  
Medical Research ◽  
Conflicts Of Interest ◽  
White Male ◽  
Therapeutic Benefit ◽  
Media Representations ◽  
The Public ◽  
Research Participants ◽  
Television Shows ◽  
Human Participants ◽  
Fictional Representations

Fictional television shows and films convey cultural assumptions about scientists and the research enterprise. But how do these forms of entertainment portray medical research participants? We sampled 65 television shows and films released between 2004 and 2014 to determine the ways in which medical research and human participants are represented in popular media. We found that research participants are largely represented as White, male, and lower or working class and that 40% of the participants depicted in these fictional accounts were seeking financial compensation, 34% were hoping for a therapeutic benefit, and 15% were coerced into participation. Regardless of participant motivation, media representations tended to portray a negative outcome of medical research. Interpreting the themes in these media, we argue that these fictional portrayals might provide the public with valuable representations of medical research, especially in terms of risks to research participants, scientific failure, and researchers’ conflicts of interest.

Thinking About Data With Grounded Theory

2018 ◽  
Vol 25 (8) ◽  
pp. 743-753 ◽  
Author(s):  
Kathy Charmaz ◽  
Linda Liska Belgrave
Keyword(s):  
Qualitative Research ◽  
Grounded Theory ◽  
Qualitative Data ◽  
Research Process ◽  
Individual Responsibility ◽  
Research Participants ◽  
Self Sufficiency ◽  
Access To Data ◽  
Deductive Research

This article examines qualitative data in an era of neoliberalism and focuses on the place of data in grounded theory studies. Neoliberal values of individual responsibility, self-sufficiency, competition, efficiency, and profit have entered the conduct of research. Neoliberalism fosters (a) reifying quantitative logical-deductive research, (b) imposing surveillance of types and sources of data, (c) marginalizing inductive qualitative research, and (d) limiting access to data in grounded theory studies. Grounded theory relies on data and resists current efforts to abandon data. The method resides in the space between reifying and rejecting data. Data allow us to learn from the stories of those left out and permits research participants to break silences. Data can help us look underneath and beyond our privileges, and alter our views. Grounded theory is predicated on data, but how researchers regard and render data depends on which version of the method they adopt. We propose developing a strong methodological self-consciousness to learn how we affect the research process and to counter the subtle effects of neoliberalism.

Research-Related Injury: Problems and Solutions

2003 ◽  
Vol 31 (3) ◽  
pp. 419-428 ◽  
Author(s):  
Larry D. Scott
Keyword(s):  
At Risk ◽  
Medical Research ◽  
Behavioral Research ◽  
Research Subjects ◽  
Ethical Problems ◽  
Research Participants ◽  
Personal Benefit ◽  
Societal Benefits ◽  
Problems And Solutions ◽  
Participation In Research

The highly publicized deaths of research participants Ellen Roche and Jesse Gelsinger are stark reminders that risk is inherent in medical research and while untoward outcomes are infrequent when compared to individual and societal benefits, injury and even death will happen. Who is responsible for the welfare of research subjects and what are they owed? Why were they put at risk to begin with? Are obligations, if any, to research subjects dependent on the type of study in which they participate, in recognition that there may be personal benefit from participation in some studies?The issue of injury resulting from participation in research and answers to questions such as those just posed were last considered in depth nearly 20 years ago by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.

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