Accessibility and Quality of Online Cancer-Related Clinical Trial Information for Naïve Searchers

Abel, Gregory A.; Cronin, Angel M.; Earles, Kristofer D.; Gray, Stacy W.

doi:10.1158/1055-9965.epi-15-0274

“…However, provision of online information on trials does not appear to have decreased misunderstandings. Previous research on online trial information has shown that the documents are not adequately providing patients with relevant information, mainly because of poor readability and the use of difficult terminology (Abel, Cronin, Earles, & Gray, 2015;Atkinson et al, 2008).…”

Section: Research Informationmentioning

confidence: 99%

Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway

Godskesen

¹

,

Fernow

²

,

Eriksson

³

2018

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Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.

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“…The Internet is having an increased impact on patient recruitment. Papers in this group addressed improving patient awareness of available studies, creating online registries and portals, and analyzing the new ethical issues that arise in the use of such systems [46][47][48][49].…”

Section: Enrolling Participants Into Studiesmentioning

confidence: 99%

Clinical Research Informatics: Supporting the Research Study Lifecycle

Johnson¹

2017

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SummaryObjectives: The primary goal of this review is to summarize significant developments in the field of Clinical Research Informatics (CRI) over the years [2015][2016]. The secondary goal is to contribute to a deeper understanding of CRI as a field, through the development of a strategy for searching and classifying CRI publications. Methods: A search strategy was developed to query the PubMed database, using medical subject headings to both select and exclude articles, and filtering publications by date and other characteristics. A manual review classified publications using stages in the "research study lifecycle", with key stages that include study definition, participant enrollment, data management, data analysis, and results dissemination. Results: The search strategy generated 510 publications. The manual classification identified 125 publications as relevant to CRI, which were classified into seven different stages of the research lifecycle, and one additional class that pertained to multiple stages, referring to general infrastructure or standards. Important cross-cutting themes included new applications of electronic media (Internet, social media, mobile devices), standardization of data and procedures, and increased automation through the use of data mining and big data methods. Conclusions: The review revealed increased interest and support for CRI in large-scale projects across institutions, regionally, nationally, and internationally. A search strategy based on medical subject headings can find many relevant papers, but a large number of non-relevant papers need to be detected using text words which pertain to closely related fields such as computational statistics and clinical informatics. The research lifecycle was useful as a classification scheme by highlighting the relevance to the users of clinical research informatics solutions.

show abstract

“…The Internet is having an increased impact on patient recruitment. Papers in this group addressed improving patient awareness of available studies, creating online registries and portals, and analyzing the new ethical issues that arise in the use of such systems [46][47][48][49].…”

Section: Enrolling Participants Into Studiesmentioning

confidence: 99%

Clinical Research Informatics: Supporting the Research Study Lifecycle

Johnson¹

2017

Yearb Med Inform

0

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SummaryObjectives: The primary goal of this review is to summarize significant developments in the field of Clinical Research Informatics (CRI) over the years [2015][2016]. The secondary goal is to contribute to a deeper understanding of CRI as a field, through the development of a strategy for searching and classifying CRI publications. Methods: A search strategy was developed to query the PubMed database, using medical subject headings to both select and exclude articles, and filtering publications by date and other characteristics. A manual review classified publications using stages in the "research study lifecycle", with key stages that include study definition, participant enrollment, data management, data analysis, and results dissemination. Results: The search strategy generated 510 publications. The manual classification identified 125 publications as relevant to CRI, which were classified into seven different stages of the research lifecycle, and one additional class that pertained to multiple stages, referring to general infrastructure or standards. Important cross-cutting themes included new applications of electronic media (Internet, social media, mobile devices), standardization of data and procedures, and increased automation through the use of data mining and big data methods. Conclusions: The review revealed increased interest and support for CRI in large-scale projects across institutions, regionally, nationally, and internationally. A search strategy based on medical subject headings can find many relevant papers, but a large number of non-relevant papers need to be detected using text words which pertain to closely related fields such as computational statistics and clinical informatics. The research lifecycle was useful as a classification scheme by highlighting the relevance to the users of clinical research informatics solutions.

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Accessibility and Quality of Online Cancer-Related Clinical Trial Information for Naïve Searchers

Cited by 16 publications

References 17 publications

Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway

Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway

Clinical Research Informatics: Supporting the Research Study Lifecycle

Clinical Research Informatics: Supporting the Research Study Lifecycle

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