Development and Initial Feasibility Testing of the Virtual Research Navigator (VRN): A Public-Facing Agent-Based Educational System for Clinical Research Participation

2020 ◽  
pp. 304-307
Author(s):  
Sharon Mozgai ◽  
Arno Hartholt ◽  
Dayo Akinyemi ◽  
Katarina Kubicek ◽  
Albert (Skip) Rizzo ◽  
...  
Keyword(s):  
Clinical Research ◽  
Educational System ◽  
Research Participation ◽  
Agent Based ◽  
Feasibility Testing

scholarly journals Incentives and barriers to neurological clinical research participation

2011 ◽  
Vol 1 (12) ◽  
pp. 1663-1668 ◽  
Author(s):  
Anne S Lindblad ◽  
Pam Zingeser ◽  
Nil Sismanyazici-Navaie
Keyword(s):  
Clinical Research ◽  
Research Participation

Abstract 167: Factors Influencing the Decision to Accept or Decline to Participate in Clinical Research: A Qualitative Study

2018 ◽  
Vol 11 (suppl_1) ◽  
Author(s):  
Fiona Ecarnot ◽  
Romain Chopard ◽  
Francois Schiele ◽  
Nicolas Meneveau
Keyword(s):  
Clinical Trial ◽  
Qualitative Study ◽  
Clinical Research ◽  
Emotional Health ◽  
Research Participation ◽  
Two Dimensions ◽  
Trial Participation ◽  
Main Concern ◽  
Inclusion Criteria ◽  
General Behaviour

Introduction: Guidelines rely on evidence-based data, and clinical research is key to providing this evidence-base. Yet the factors that influence a patient’s decision to participate (or not) in research remain poorly documented. We aimed to investigate the factors that determine the decision to accept or decline clinical trial participation, using a qualitative approach. Methods: Single-centre, qualitative study using semi-directive interviews with patients (pts) who had been invited to participate in a randomized clinical trial and who had given their decision. Both pts who refused and pts who accepted were included. There were no inclusion criteria; all pts who met the inclusion criteria of the selected trial and had been approached for consent were eligible. Pts also completed a questionnaire rating 16 statements examining reasons for accepting or declining trial entry. Verbatim from the interviews were analysed using a grounded theory (GT) approach. Results: To date, 14 patients have been interviewed; average age 75±7 years. Two pts did not know if they were currently participating in a trial or not; 1 said he was not participating although he had provided consent. From a GT perspective, the main concern of patients does not appear to be the question of research participation, but rather the fact of being sick, and their overriding preoccupation is how to return to their previous state of wellbeing and overcome the current acute episode. Regarding the decision to participate in research, the main themes that arose were: (1) the positive value of the trial for the patient (benefitting from the intervention; interest in receiving closer and/or more regular follow-up due to trial participation), although some pts clearly do not understand the concept of randomization; (2) the level of engagement in the process of care (some pts do not bother to read the information given to them, but just accept what is proposed without question, while others decline immediately without reading trial information). Two dimensions emerge, namely physical and emotional health, with a spectrum ranging from fragile to robust. Where the patient is situated on this spectrum appears to influence their attitude towards research participation. Conclusions: The decision to participate (or not) in clinical research appears to be more related to the patient’s general behaviour and attitude when sick, rather than any specific trial-related constraints or advantages. The level of comprehension of pts who have been through the consent process casts a doubt on the “informed” character of the consent.

Improving Participation and Quality of Clinical Research in a University-Based General Surgery Residency Program

2010 ◽  
Vol 76 (7) ◽  
pp. 741-742 ◽  
Author(s):  
Carla Fisher ◽  
Megan K. Baker
Keyword(s):  
Clinical Research ◽  
General Surgery ◽  
Human Subjects ◽  
Case Reports ◽  
Compliance Rate ◽  
Research Participation ◽  
Laboratory Research ◽  
General Surgery Residency ◽  
Institutional Review ◽  
Surgery Residency Program

At a university-based general surgery training program, post-graduate year (PGY) to 5 categorical general surgery residents had been required to complete an annual clinical research project and a year of laboratory research. Since the 80-hour work week, the laboratory experience was made optional, with a resultant decline in laboratory and clinical participation by 50 per cent and 75 per cent, respectively. Our goal was to review the effect of a simple programmatic intervention on the research compliance rate and quality. The Department was informed about the clinical research requirement via e-mail, memo, and announcements. Faculty submitted lists of novel or on-going projects. This was compiled and e-mailed to the Department with a list of project milestones. This included identification of a research mentor and project, Human Subjects Course certification, institutional review board submission dates, a midyear progress report, and final submission date. Rates of compliance and nature of research were recorded the year before and the 2 years after the intervention. Before the intervention, 2 of 16 residents were compliant. Faculty submitted 76 projects for resident review. One hundred per cent compliance with all aspects of the program was seen at the end of both year 1 and 2. Case reports rate fell from 65, to 30, to 25 per cent by the end of year 2. Publications increased from three preintervention to 13 by year 2. Presentations increased from five preintervention to 13 by end of year 2. This study demonstrates that small inexpensive interventions can have a dramatic effect on research participation.

Clinical Research With Pregnant Women: Perspectives of Pregnant Women, Health Care Providers, and Researchers

2018 ◽  
Vol 28 (13) ◽  
pp. 2033-2047 ◽  
Author(s):  
Kyoko Wada ◽  
Marilyn K. Evans ◽  
Barbra de Vrijer ◽  
Jeff Nisker
Keyword(s):  
Health Care ◽  
Prenatal Care ◽  
Clinical Research ◽  
Pregnant Women ◽  
Health Care Providers ◽  
Research Participation ◽  
Well Being ◽  
Constructivist Grounded Theory ◽  
Care Providers ◽  
Women Health

Limited clinical research with pregnant women has resulted in insufficient data to promote evidence-informed prenatal care. Charmaz’s constructivist grounded theory methodology was used to explore how research with pregnant women would be determined ethically acceptable from the perspectives of pregnant women, health care providers, and researchers in reproductive sciences. Semistructured interviews were conducted with a purposive sample of 12 pregnant women, 10 health care providers, and nine reproductive science researchers. All three groups suggested the importance of informed consent and that permissible risk would be very limited and complex, being dependent on the personal benefits and risks of each particular study. Pregnant women, clinicians, and researchers shared concerns about the well-being of the woman and her fetus, and expressed a dilemma between promoting research for evidence-informed prenatal care while securing the safety in the course of research participation.

Research Participation: A Moral Obligation?

2012 ◽  
Vol 5 (2) ◽  
pp. 137-141
Author(s):  
Susan Doyle-Lindrud
Keyword(s):  
Clinical Research ◽  
Moral Obligation ◽  
Research Participation ◽  
Past Research ◽  
The Public ◽  
Public Benefit ◽  
Do So ◽  
Research Studies

We as a society have all benefited from past research. These benefits include immunizations, antibiotics, antihypertensive, diabetic medication, and many more. Clinical research is ongoing, looking for better treatments, improved technologies, and cures for diseases. Unfortunately, enrollment into these research studies is often low and can become the barrier to completing the study. Why do so few people participate in trials and yet expect researchers to find cures? Should the public benefit from the latest treatments without ever having to participate in the process? Do we have a moral obligation to participate in research or should it be left to the altruistic members of society alone? Differing views of this argument are explored.

scholarly journals Therapeutic appropriation: a new concept in the ethics of clinical research

2016 ◽  
Vol 42 (12) ◽  
pp. 805-808 ◽  
Author(s):  
Rosalind McDougall ◽  
Dominique Martin ◽  
Lynn Gillam ◽  
Nina Hallowell ◽  
Alison Brookes ◽  
...  
Keyword(s):  
Primary Care ◽  
Clinical Research ◽  
Clinical Care ◽  
Research Participation ◽  
Therapeutic Benefit ◽  
Therapeutic Misconception ◽  
Ethical Problems ◽  
Ethical Concerns ◽  
Research Participants ◽  
Therapeutic Needs

Ethical concerns about therapeutic misconception have been raised since the early 1980s. This concept was originally described as research participants' assumptions that decisions relating to research interventions are made on the basis of their individual therapeutic needs. The term has since been used to refer to a range of ‘misunderstandings’ that research participants may have. In this paper, we describe a new concept—therapeutic appropriation. Therapeutic appropriation occurs when patients, or clinicians, actively reframe research participation as an opportunity to enhance patients' clinical care, while simultaneously acknowledging the generalised research aims. To illustrate the concept of therapeutic appropriation, we draw on data from an interview study which we conducted to investigate the experiences of patients and general practitioners involved in clinical trials in primary care. We argue that therapeutic appropriation has two key elements: comprehension that the research project is not necessarily aiming to benefit participants and the deliberate use of incidental features of the research for personal therapeutic benefit of various kinds. We conclude that therapeutic appropriation is a useful concept that refines understanding of potential ethical problems in clinical research, and points to strategies to address them.

Guardianship and Clinical Research Participation: The Case of Wards with Disorders of Consciousness

2017 ◽  
Vol 27 (1) ◽  
pp. 43-70 ◽  
Author(s):  
Megan S. Wright ◽  
Michael R. Ulrich ◽  
Joseph J. Fins
Keyword(s):  
Clinical Research ◽  
Research Participation ◽  
Disorders Of Consciousness

scholarly journals A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Aman Saini ◽  
Colleen Cochran ◽  
Audrey Zucker-Levin ◽  
Sarah J. Donkers ◽  
Pawan Kumar ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Knowledge Translation ◽  
Clinical Research ◽  
Research Program ◽  
Research Participation ◽  
Research Process ◽  
Patient Centered ◽  
Research Activities ◽  
Strongly Agree ◽  
Experiential Research

Background. Knowledge translation (KT) models that represent an individual’s perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants’ perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference. Methods. A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants’ perspectives on the value and acceptability of the experiential research program was developed and analyzed. Results. 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: “Did you feel like participating in research today was a valuable experience to you?” and “Did you feel like you were contributing to MS research?” 100% of the participants agreed or strongly agreed when asked “would you like to see more research activities taking place at these kinds of events?” Conclusions. This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

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