The Impact of Consenter Characteristics and Experience on Patient Interest in Clinical Research

Rasco, Drew W.; Xie, Yang; Yan, Jingsheng; Sayne, Jennifer R.; Skinner, Celette Sugg; Dowell, Jonathan E.; Gerber, David E.

doi:10.1634/theoncologist.2008-0268

Cited by 19 publications

(6 citation statements)

References 27 publications

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“…They also found that patients approached by first-time consenters were significantly less likely to consent than those approached by seasoned consenters, underscoring the importance of good training of consenters. 7,22 There was no consensus among the participants about the best time to approach cancer patients for consent to donate their cancer tissue to science. Only one-third of them felt that consent should be asked prior to surgery.…”

Section: Discussionmentioning

confidence: 99%

Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

Braun

Tsark

Powers

et al. 2014

Biopreservation and Biobanking

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Little is known about how cancer patients feel about donating their tissue, especially in a multiethnic population. Structured interviews were conducted with 30 patients recently diagnosed with cancer, referred to the study by six cancer surgeons and oncologists and by other patients in the study. The participants reported a variety of cancers, and the sample reflected the racial distribution of Hawai`i, including Caucasians (23%), Native Hawaiians and Pacific Islanders (27%), Asians (37%), Hispanics (7%), Native Americans (3%), and African Americans (3%). The interview questions and analysis were guided by the Framework Approach, with interview questions based on pre-set aims. Findings suggest that most cancer patients would donate cancer tissue to science, especially if informed that doing so could help researchers find causes of and cures for cancer. Patients varied on when in their cancer journey they would be most receptive to being asked for a donation, however two-thirds thought they would be more receptive if approached after surgery. Only three of the 30 patients said they would want to be re-consented each time their tissue is requested for research. They identified their physician as the preferred messenger regarding tissue donation. No obvious differences were seen by race. Findings confirm those of other researchers who have reported broad support for biobank participation if informed consent and confidentiality could be assured. Given that the physician was seen as the key messenger about biobanking, more education is needed around cancer tissue collection for physicians, as well as for cancer patients.

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Section: Discussionmentioning

confidence: 99%

Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

Braun

Tsark

Powers

et al. 2014

Biopreservation and Biobanking

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“…In a previous study, it was shown that participants with low overall motivation or motivation fueled by money/gifts tend to have more concerns and a poorer understanding of a long-term cohort study, potentially increasing the risk of dropout [17]. It was also reported that the experience of consenters affected the willingness of patients enrolled in a university-based cancer center tissue repository during follow-up and future research [18]. Communication between experienced ToMMo GMRCs and participants is therefore very important in maintaining or even increasing participant cooperation.…”

Section: Discussionmentioning

confidence: 99%

A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

et al. 2019

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Background Genome cohort studies are used to analyze interactions between genetic and environmental factors, providing valuable information for personalized healthcare. Large-scale and long-term cohort studies require a number of specially trained personnel, of whom those involved in obtaining informed consent play a vital role, especially during the initial phase of such studies. The Japanese Society of Human Genetics (JSHG) previously established a certification system for genome medical research coordinators (GMRCs) responsible for obtaining written consent via face-to-face explanation. Meanwhile, in the Tohoku Medical Megabank Organization (ToMMo), GMRCs are expected to play important roles not only in obtaining informed consent and conducting various assessments, but also in communicating with participants throughout the long-term follow-up. Based on the JSHG program, we therefore developed a specific education and training program for ToMMo GMRCs consisting of 17 lectures, one practical training session on the informed consent procedure, and written and interview examinations. Re-education workshops aimed at self-improvement are also carried out following certification. In this study, we evaluated the education and training program in terms of overall understanding, usefulness, and satisfaction using an anonymous questionnaire. Methods An anonymous questionnaire addressing each aspect of the education and training program (understanding, usefulness, and satisfaction) was distributed among 152 qualified ToMMo GMRCs. Responses were received from 94 participants (61.8%). Results There was a significant association between the level of overall understanding of lectures and medical qualification (nurse or clinical laboratory technologist), but not with age or educational background. The level of understanding and overall usefulness were lower in sessions related to genetics and epidemiology than those dealing with ToMMo practices. In the re-education workshops, GMRCs showed a preference for and hoped to learn more about both background knowledge and research progress in the ToMMo. Conclusions The results of our questionnaire suggest that not all ToMMo GMRCs are able to understand everything during the initial education and training program, especially in terms of genomic medicine. Continuous re-education is therefore vital in improving knowledge, skills and motivation, and preparing GMRCs for a specialist role in community-based personalized healthcare. Electronic supplementary material The online version of this article (10.1186/s12909-019-1725-5) contains supplementary material, which is available to authorized users.

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“…The majority of cancer patients are unaware that they might be eligible for a clinical trial, or that trials are conducted where they are receiving treatment [10]. Interest in a trial is predicated on respect for persons and may be associated with optimism [40], gender [41], more information (cancer site, age > 80 years, serious disease status) [13,32,33,38], type of intervention, marital status, race [42], physician communication styles [43], and other factors [27]. …”

Section: Methodsmentioning

confidence: 99%

Removing barriers to participation in clinical trials, a conceptual framework and retrospective chart review study

Kanarek

Olatoye³

et al. 2012

Trials

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BackgroundEnrollment in interventional therapeutic clinical trials is a small fraction of all patients who might participate given reasonable access.MethodsA hierarchical approach is utilized in measuring staged participation from trial availability to patient enrollment. Our framework suggests that concern for justice comes in the design and eligibility criteria for clinical trials; attention to beneficence is given in the eligibility and physician triage stages. The remaining four stages rely on respect for persons. An example is given where reasons for nonparticipation or barriers to participation in prostate cancer clinical trials are examined within the framework. In addition, medical oncology patients with an initial six month consultation are tracked from one stage to the next by race using the framework to assess participation comparability.ResultsWe illustrated seven transitions from being a patient to enrollment in a clinical trial in a small study of prostate cancer cases who consulted SKCCC Medical Oncology Department in early 2010. Pilot data suggest transition probabilities as follows: 65% availability, 84% eligibility, 92% patient triage, 89% trials discussed, 45% patient interested, 63% patient consented, and 92% patient enrolled. The average transition probability was 77.7%. The average transition probability, patient-trial-fit was 50%; opportunity was 51%, and acceptance was 66.7%. Trial availability, patient interest and patient consented were three transitions that were below the average; none were statistically significant.ConclusionsThe framework may serve to streamline comprehensive reporting of clinical trial participation to the benefit of patients and the ethical conduct of clinical trials.

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The Impact of Consenter Characteristics and Experience on Patient Interest in Clinical Research

Cited by 19 publications

References 27 publications

Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

Cancer Patient Perceptions about Biobanking and Preferred Timing of Consent

A training and education program for genome medical research coordinators in the genome cohort study of the Tohoku Medical Megabank Organization

Removing barriers to participation in clinical trials, a conceptual framework and retrospective chart review study

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