scholarly journals The secondary use and linking of health administrative and clinical trial data in cancer: attitudes towards data reuse in Australia

The Breast ◽  
2021 ◽  
Vol 56 ◽  
pp. S84
Author(s):  
E. Hutchings ◽  
B.E. Butcher ◽  
P. Butow ◽  
F.M. Boyle
Keyword(s):  
Clinical Trial ◽  
Clinical Trial Data ◽  
Trial Data ◽  
Data Reuse ◽  
Secondary Use

scholarly journals A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Elizabeth Hutchings ◽  
Max Loomes ◽  
Phyllis Butow ◽  
Frances M. Boyle
Keyword(s):  
Clinical Trial ◽  
Literature Review ◽  
Data Sharing ◽  
Data Storage ◽  
Systematic Literature Review ◽  
Healthcare Professionals ◽  
Clinical Trial Data ◽  
Trial Data ◽  
Original Research ◽  
Secondary Use

Abstract A systematic literature review of researchers and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted using electronic data searching. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design, or disease setting. Two authors were involved in all stages of the review process; conflicts were resolved by consensus. Data was extracted independently using a pre-piloted data extraction template. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Eighteen eligible articles were identified, and articles were categorised into four key themes: barriers, facilitators, access, and ownership; 14 subthemes were identified. While respondents were generally supportive of data sharing, concerns were expressed about access to data, data storage infrastructure, and consent. Perceptions of data ownership and acknowledgement, trust, and policy frameworks influenced sharing practice, as did age, discipline, professional focus, and world region. Young researchers were less willing to share data; they were willing to share in circumstances where they were acknowledged. While there is a general consensus that increased data sharing in health is beneficial to the wider scientific community, substantial barriers remain. Systematic review registration PROSPERO CRD42018110559

scholarly journals A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Elizabeth Hutchings ◽  
Max Loomes ◽  
Phyllis Butow ◽  
Frances M. Boyle
Keyword(s):  
Clinical Trial ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Clinical Trial Data ◽  
Secondary Data ◽  
Health Data ◽  
Trial Data ◽  
Cochrane Library ◽  
Original Research ◽  
Secondary Use

Abstract Background We aimed to synthesise data on issues related to stakeholder perceptions of consent for the use of secondary data. To better understand the current literature available, we conducted a systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data. Methods EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility and two authors were involved in the full-text review process. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative studies. Results This paper focuses on a subset of 47 articles identified from the wider search and focuses on the issue of consent. Issues related to privacy, trust and transparency, and attitudes of healthcare professionals and researchers to secondary use and sharing of data have been dealt with in previous publications. Studies included a total of 216,149 respondents. Results indicate that respondents are generally supportive of using health data for research, particularly if the data is de-identified or anonymised. The requirement by participants to obtain consent prior to the use of health data for research was not universal, nor is the requirement for this always supported by legislation. Many respondents believed that either no consent or being informed of the research, but not providing additional consent, were sufficient. Conclusions These results indicate that individuals should be provided with information and choice about how their health data is used and, where feasible, a mechanism to opt-out should be provided. To increase the acceptability of using health data for research, health organisations and data custodians must provide individuals with concise information about data protection mechanisms and under what circumstances their data may be used and by whom. Systematic review registration PROSPERO CRD42018110559 (update June 2020).

scholarly journals Clinical trial data reuse – overcoming complexities in trial design and data sharing

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Toby Wilkinson ◽  
Siddharth Sinha ◽  
Niels Peek ◽  
Nophar Geifman
Keyword(s):  
Clinical Trial ◽  
Data Sharing ◽  
Trial Design ◽  
Clinical Trial Data ◽  
Trial Data ◽  
Data Reuse

scholarly journals A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Elizabeth Hutchings ◽  
Max Loomes ◽  
Phyllis Butow ◽  
Frances M. Boyle
Keyword(s):  
Clinical Trial ◽  
Data Analysis ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Clinical Trial Data ◽  
Secondary Data ◽  
Consumer Attitudes ◽  
Health Data ◽  
Trial Data ◽  
Secondary Use

Abstract We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility, and two authors were involved in the full text review process. Data was extracted using a pre-piloted data extraction template by one author and checked by another. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative and quantitative studies. This paper focuses on a subset of 35 articles identified from the wider search which focus on issues of privacy, trust, and transparency. Studies included a total of 56,365 respondents. Results of this systematic literature review indicate that while respondents identified advantages in sharing health data, concerns relating to trust, transparency, and privacy remain. Organisations collecting health data and those who seek to share data or undertake secondary data analysis should continue to develop trust, transparency, and privacy with healthcare consumers through open dialogue and education. Consideration should be given to these issues at all stages of data collection including the conception, design, and implementation phases. While individuals understand the benefits of health data sharing for research purposes, ensuring a balance between public benefit and individual privacy is essential. Researchers and those undertaking secondary data analysis need to be cognisant of these key issues at all stages of their research. Systematic review registration: PROSPERO registration number CRD42018110559 (update June 2020).

Clinical Trial Data Management Software: A Review of the Technical Features

2019 ◽  
Vol 14 (3) ◽  
pp. 160-172 ◽  
Author(s):  
Aynaz Nourani ◽  
Haleh Ayatollahi ◽  
Masoud Solaymani Dodaran
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Data Management ◽  
Clinical Data ◽  
Clinical Trial Data ◽  
Trial Data ◽  
Data Management System ◽  
Management Systems ◽  
Data Management Systems ◽  
Technical Features

Background:Data management is an important, complex and multidimensional process in clinical trials. The execution of this process is very difficult and expensive without the use of information technology. A clinical data management system is software that is vastly used for managing the data generated in clinical trials. The objective of this study was to review the technical features of clinical trial data management systems.Methods:Related articles were identified by searching databases, such as Web of Science, Scopus, Science Direct, ProQuest, Ovid and PubMed. All of the research papers related to clinical data management systems which were published between 2007 and 2017 (n=19) were included in the study.Results:Most of the clinical data management systems were web-based systems developed based on the needs of a specific clinical trial in the shortest possible time. The SQL Server and MySQL databases were used in the development of the systems. These systems did not fully support the process of clinical data management. In addition, most of the systems lacked flexibility and extensibility for system development.Conclusion:It seems that most of the systems used in the research centers were weak in terms of supporting the process of data management and managing clinical trial's workflow. Therefore, more attention should be paid to design a more complete, usable, and high quality data management system for clinical trials. More studies are suggested to identify the features of the successful systems used in clinical trials.

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