Iranian Journal of Information Processing and Management

Iranian Journal of Information Processing and Management

Research data Sharing Case study: Medical faculty members

Authors
1 Tehran University; Tehran, Iran
2 Department of Knowledge and Information Science; Shahid Bahonar University of Kerman; Kerman, Iran;
3 Iranian Research Institute for Information Science & Technology (IranDoc); Tehran, Iran
Abstract
Purpose: Advances in information and communication technologies have facilitated the research and production of large volumes of data, and this has led to a new paradigm in scientific research called the fourth paradigm of science. The purpose of this study was to evaluate the status of research data sharing among researchers at Kerman University of Medical Sciences.
Methodology: This study is a descriptive survey research. The study population consisted of all faculty members of Kerman University of Medical Sciences with 521 members. The sample size was estimated 220 using Cochran formula.  Data collection tool was a researcher-built questionnaire. Cronbach's alpha coefficient was used to calculate the reliability of different parts of questionnaire. Data were analyzed using descriptive statistics including frequency, percentage, mean and standard deviation.
Findings: The status of research data sharing in terms of human factors with an average of 3.67 is in relatively desirable condition. Among the human factor variables, the factor of understanding the importance and necessity of data sharing with an average of 4.21 is in a better position than other items. Also, the status of research data sharing of technical factors with an average of 2.58 and in terms of organizational factors with an average of 2.35 is in a relatively desirable condition.
Among the items of organizational factors, respectively, holding training courses, support of senior managers of the organization, standards and regulations, the existence of a special program for data sharing and communication channels between researchers are in an unfavorable condition. Also, the sharing of research data in terms of legal factors with an average of 2.36 is relatively desirable. Legal frameworks, control of data access, and the organization's obligation to share data in research projects are in poor condition. Cultural factors related to data sharing, with an average of 3.95 are in good condition. Among the items of this dimension, only two items of incentive and motivation mechanisms and reducing unsound competition are in a relatively desirable condition.
Results: The results indicated that Data management programs will enable communication with the areas of production, organization, management and preparation of specialized medical data, providing a sharing process for future exploitation. Encouraging the culture of data sharing, holding training courses, designing data sharing agreements, protecting privacy and data confidentiality, financial support, and strengthening the technology infrastructure are among the suggestions of this research.
Keywords

بازرگان، عباس، یوسف حجازی، و فاخته اسحاقی. 1386. فرایند ارزیابی درونی در گروه‌های آموزشی دانشگاهی. تهران: روان.
دانشگاه علوم پزشکی کرمان، روابط عمومی. 1399. حضور دانشگاه علوم پزشکی کرمان در جمع برترین دانشگاه‌های جهان .http://pr.kmu.ac.ir/fa/ndt/36271 (دسترسی در 23/9/1400).
دانشگاه علوم پزشکی کرمان، گروه علم‌سنجی و پایش. 1399. ورود دانشگاه علوم پزشکی کرمان به رتبه‌بندی تایمز 2021 دانشگاه‌های برتر جهان برای نخستین بار.http://sci.kmu.ac.ir (دسترسی در 23/9/1400).
صراف‌زاده، مریم. 1394. مدیریت کلان داده‌های پژوهشی: نقش کتابخانه‌های دانشگاهی. فصلنامه نقد کتاب 6: 265-273.
محمدبیگی، ابوالفضل، نرگس محمدصالحی، محمدعلی گل. 1393. روایی و پایایی ابزارها و روش‌های مختلف اندازه‌گیری آن‌ها در پژوهش‌های کاربردی در سلامت. دانشگاه علوم پزشکی رفسنجان 13: 1153-1170.
مرجع دانشگاه‌های ایران. 1400. رتبة دانشگاه علوم پزشکی کرمان. .https://www.uniref.ir/University541 (دسترسی در 23/9/1400).
وزیری، اسماعیل، نادر نقشینه، عبدالرضا نوروزی چاکلی، میترا دیلمقانی، و شهرام توفیقی. 1396. عوامل مؤثر بر اشتراک‌گذاری داد‌ه‌های پژوهشی: مرور پیشینه‌ها. فصلنامة مطالعات ملی کتابداری و سازماندهی اطلاعات 8 (3): 123-139.
 
ACMG Board of Directors. 2017. Laboratory and clinical genomic data sharing is crucial to improving genetic health care: a position statement of the American College of Medical Genetics and Genomics. Genetics in Medicine 19 (7): 721-722.
Bezuidenhout, L., & E. Chakauya. 2018. Hidden concerns of sharing research data by low/middle-income country scientists. Global Bioethics 29 (1): 39-54.
Bonomi, L., Y. Huang, & L. Ohno-Machado. 2020. Privacy challenges and research opportunities for genomic data sharing. Nature genetics 52 (7): 646-654. DOI: https://doi.org/10.1038/s41588-020-0651-0
Bowman, N. D., & P. R. Spence. 2020. Challenges and best practices associated with sharing research materials and research data for communication scholars. Communication Studies 71 (4): 708-716.
Byrd, J. B., A. C. Greene, D. V. Prasad, X. Jiang, & C. S. Greene. 2020. Responsible, practical genomic data sharing that accelerates research. Nature Reviews Genetics 21 (10): 615-629.
Cheah, P. Y., N. P. Day, M. Parker, & S. Bull. 2017. Sharing individual-level health research data: experiences, challenges and a research agenda. Asian bioethics review 9 (4): 393-400.
Cheah, P. Y., N. Jatupornpimol, B. Hanboonkunupakarn, N. Khirikoekkong, P. Jittamala, S. Pukrittayakamee, & S. Bull. 2018. Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand. BMC medical ethics 19 (1): 1-11.
Courbier, S., R. Dimond, & V. Bros-Facer. 2019. Share and protect our health data: an evidence based approach to rare disease patients’ perspectives on data sharing and data protection-quantitative survey and recommendations. Orphanet journal of rare diseases 14 (1): 1-15.
Danchev, V., Y. Min, J. Borghi, M. Baiocchi, & J. P. Ioannidis. 2021. Evaluation of Data Sharing After Implementation of the International Committee of Medical Journal Editors Data Sharing Statement Requirement. JAMA network open 4 (1): e2033972-e2033972.
Danchev, V., Y. Min, J. Borghi, M. Baiocchi, & J. P. Ioannidis. 2021. Evaluation of Data Sharing After Implementation of the International Committee of Medical Journal Editors Data Sharing Statement Requirement. JAMA network open 4 (1): e2033972-e2033972.
Fan, K., S. Wang, Y. Ren, H. Li, & Y. Yang. 2018. Medblock: Efficient and secure medical data sharing via blockchain. Journal of medical systems 42 (8): 1-11. DOI: https://doi.org/10.1007/s10916-018-0993-7
Figueiredo, A. S. 2017. Data sharing: convert challenges into opportunities. Frontiers in public health 5: 327. doi: 10.3389/fpubh.2017.00327
Helou, S., V. Abou-Khalil, E. El Helou, & K. Kiyono. 2021. Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity. Studies in Health Technology and Informatics 281: 1051-1055. DOI:10.3233/SHTI210345
Houghton, C., M. McCarthy, K. Gillies, N. Rousseau, J. Wade, C. Gamble, ... & L. Biesty. 2021. A study protocol of qualitative data sharing practices in clinical trials in the UK and Ireland: towards the production of good practice guidance. HRB Open Research 4: 47. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8167499/ (accessed May 7, 2020)
Jin, H., Y. Luo, P. Li, & J. Mathew. 2019. A review of secure and privacy-preserving medical data sharing. IEEE Access 7: 61656-61669. DOI: 10.1109/ACCESS.2019.2916503
Kalkman, S., M. Mostert, C. Gerlinger, J. J. Van Delden, & G. J. Van Thiel. 2019. Responsible data sharing in international health research: a systematic review of principles and norms. BMC medical ethics 20 (1): 1-13. DOI :https://doi.org/10.1186/s12910-019-0359-9
Kostkova, P. 2018. Disease surveillance data sharing for public health: the next ethical frontiers. Life sciences, society and policy 14 (1): 1-5.
Kumar, R., W. Wang, J. Kumar, T. Yang, A. Khan, W. Ali, & I. Ali. 2021. An Integration of Blockchain and AI for Secure Data Sharing and Detection of CT images for the Hospitals. Computerized Medical Imaging and Graphics 87: 101812. DOI: https://doi.org/10.1016/j.compmedimag.2020.101812
Liang, X., J. Zhao, S. Shetty, J. Liu, & D. Li. 2017. Integrating blockchain for data sharing and collaboration in mobile healthcare applications. In 2017 IEEE 28th annual international symposium on personal, indoor, and mobile radio communications (PIMRC) (pp. 1-5). IEEE.
McLeod, C., A. M. Gout, X. Zhou, A. Thrasher, D. Rahbarinia, S. W. Brady, ... & J. Zhang. 2021. St. Jude Cloud: A Pediatric Cancer Genomic Data-Sharing Ecosystem. Cancer Discovery 11 (5): 1082-1099.
Mello, M. M., V. Lieou, & S. N. Goodman. 2018. Clinical trial participants’ views of the risks and benefits of data sharing. New England journal of medicine 378 (23): 2202-2211.
Meyer, M. N. 2018. Practical tips for ethical data sharing. Advances in methods and practices in psychological science 1 (1): 131-144.
Mietchen, D., & J. Li. 2020. Quantifying the Impact of Data Sharing on Outbreak Dynamics (QIDSOD). Research Ideas and Outcomes 6: e54770.
Moorthy, V., A. M. H. Restrepo, M. P. Preziosi, & S. Swaminathan. 2020. Data sharing for novel coronavirus (COVID-19). Bulletin of the World Health Organization 98 (3): 150.
Neve, J., & G. Rousselet. 2021. The Evolution of Data Sharing Practices in the Psychological Literature. PsyArXiv; DOI: 10.31234/osf.io/3xdja.
Paul, S., & M. K. Chatterjee. 2020. Data sharing solutions for biobanks for the COVID-19 pandemic. Biopreservation and Biobanking 18 (6): 581-586. DOI: https://doi.org/10.1089/bio.2020.0040
Popkin, G. 2019. Data sharing and how it can benefit your scientific career. Nature 569 (7756): 445-447.
Riso, B., A. Tupasela, D. F. Vears, H. Felzmann, J. Cockbain, M. Loi, ... & V. Rakic. 2017. Ethical sharing of health data in online platforms–which values should be considered? Life sciences, society and policy 13 (1): 1-27. DOI: https://doi.org/10.1186/s40504-017-0060-z
Ross, M. W., M. Y. Iguchi, & S. Panicker. 2018. Ethical aspects of data sharing and research participant protections. American Psychologist 73 (2): 138.
Shabani, M. 2021. Collection and sharing of genomic and health data for research purposes: Going beyond data collection in traditional research settings. Biolaw Journal-Rivista di Biodiritto 2021 (1): 251-260.
Shen, B., J. Guo, & Y. Yang. 2019. MedChain: Efficient healthcare data sharing via blockchain. Applied sciences 9 (6): 1207.
Song, D., M. Chen, & S. Fan. 2021. The Study of Privacy Protection of Scientific Data Sharing Based on Data Life Cycle. Journal of Physics: Conference Series 1952 (4): 042142.
Staccini, P., & A. Y. Lau. 2018. Findings from 2017 on Consumer Health Informatics and Education: Health data access and sharing. Yearbook of medical informatics 27 (01): 163-169. DOI: 10.1055/s-0038-1641218
Tenopir, C., N. M. Rice, S. Allard, L. Baird, J. Borycz, L. Christian, & R. J. Sandusky. 2020. Data sharing, management, use, and reuse: Practices and perceptions of scientists worldwide. PloS one 15 (3): e0229003.
Thorogood, A., A. Mäki-Petäjä-Leinonen, H. Brodaty, G. Dalpé, C. Gastmans, S. Gauthier, ... & D. T. Team. 2018. Consent recommendations for research and international data sharing involving persons with dementia. Alzheimer's & Dementia 14 (10): 1334-1343.DOI: https://doi.org/10.1016/j.jalz.2018.05.011
Unal, Y., G. Chowdhury, S. Kurbanoglu, J. Boustany, & G. Walton. 2018. Research data management and data sharing behaviour of university researchers. Proceedings of ISIC: The Information Behaviour Conference, Krakow, Poland. ( 9-11 October).
Zhu, Y. 2020. Open-access policy and data-sharing practice in UK academia. Journal of Information Science. 46 (1): 41-52.
Zurek, B., K. Ellwanger, L. E. Vissers, R. Schüle, M. Synofzik, A. Töpf, ... & H. Graessner. 2021. Solve-RD: systematic Pan-European data sharing and collaborative analysis to solve Rare Diseases. European Journal of Human Genetics 1-6. DOI: https://doi.org/10.1038/s41431-021-00936-4

  • Receive Date 10 December 2022
  • Revise Date 23 December 2022