Accordingly, perceived risk is negatively related to monetary benefit, whereas monetary benefit is positively related to willingness to share. Shi, Rui The characteristics of users should be considered, and targeted measures should be adopted to raise awareness of the privacy protection of EHRs, to develop technical skills and increase public awareness, and to create an environment conducive to privacy protection. Understanding Public Attitudes and Willingness to Share Commercial Data for Health Research: Survey Study in the United Kingdom. Impact Score Trend Year wise Impact Score (IS) of Maternal and Child Health Journal. The damage caused by a breach of medical data will be difficult to quantify and estimate because medical data are more valuable and highly sensitive than other types of data. First, medical institutions should publicize the benefits and usefulness of sharing health information; improve patients perceptions of benefits; establish a subjective norm of mutual trust, respect, and mutual benefit; and encourage patients to share their health information more actively. J Med Ethics 2011 Jan;37(1):50-55 [, Agaku IT, Adisa AO, Ayo-Yusuf OA, Connolly GN. Factors Affecting Willingness on Sharing of Electronic Health Records Data: A Survey on Chinese Residents. Second, it is imperative to strengthen the technical skills of relevant technicians and to enhance communication on information technology security of personal health data in order to reduce perceived risks of misuse when it comes to protecting their personal data from loss as well as the persons who are allowed to access their data. In summary, this paper integrates the Theory of Privacy Calculus and the Theory of Planned Behavior for explaining the willingness to share personal health data. This is because users are willing to take possible risks and receive explicit compensation or benefits. J Med Internet Res 2010 May 25;12(2):e14 [, Hirst Y, Stoffel ST, Brewer HR, Timotijevic L, Raats MM, Flanagan JM. Information disclosure on social networking sites: An intrinsicextrinsic motivation perspective. Inf Syst Front 2017 Feb 3;19(4):753-767 [, Shibchurn J, Yan X. . Patients acknowledge that sharing personal health data has a number of potential benefits, but there are also potential risks associated with it. According to the model, 86.3% of the variance in perceived benefit, 55.5% in perceived risk, and 90.5% in sharing willingness can be explained by the entire model. The latent variables privacy concern, monetary benefit, and perceived effectiveness of government regulation are used to assess perceived risk, while the latent variables information control, moral motive, and trust are used to measure perceived benefit. An exploratory factor analysis was performed, which showed that all items had a communality value of greater than 0.4, indicating that the questionnaire information could be effectively analyzed. It has been demonstrated in some studies that perceived transparency of the privacy policy can reduce uncertainty associated with information-sharing processes, increase patient awareness of HIE, and provide knowledge about how it is carried out [59]. Research article 1 July 2023 What are the barriers preventing the screening and management of neonatal hypoglycaemia in low-resource settings, and how can they be overcome? There is a wide variation in the willingness of people to share personal health data; however, researchers should focus on communicating their data practices effectively to minimize concerns about misuse of data and increase public trust [54]. The findings of this study have several practical implications for policy makers and health care providers. In the final model, all path coefficients between measured variables and factors were significant (2-tailed; P<.05). Qiu, Xinhua The structural equation modeling analysis results provided empirical support for the proposed model. Convergent validity can be tested by examining the standardized factor loading, composite reliability, and average variance extracted (AVE). This cross-sectional field survey adheres to the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) statement [26,27]. Next, confirmatory factor analysis was used to test convergent validity and discriminant validity. Once some patients realize that sharing personal health data can contribute to advancing medicine, they will increase their willingness to share their data and achieve the interconnection of medical information [18]. The Journal turns 100 years old. Information Systems Research 2004 Dec;15(4):336-355 [, Nasser A. Front Public Health 2018;6:149 [, Moore GC, Benbasat I. Maternal and child health is an important public health issue because: * we have the opportunity to end preventable deaths among all women, children and adolescents and to greatly improve their health and well-being. Monetary benefit is one type of social reward, and may have a significant impact on willingness to share. Table 7 shows that all the heterotrait-to-monotrait ratio values are below the strict threshold of 0.85, which allows the establishment of discriminant validity [38]. The journal began its publication on January, 2016, and was published four times yearly. JS and RY acquired and analyzed the data. As indicated in the Theory of Privacy Calculus, when participants are aware of the explicit benefits of an activity, their perception of the associated risks decreases, and as a result, their behavior changes. These measures indicate that the convergent validity of the measurement model was acceptable. Through this web page, researchers can check the impact factor, total citation, journal quartile, and journal aim & scope. Journal of Child Health Care: Sage Journals Practical guidelines are provided to health policy makers and health care practitioners to encourage patients to share their personal health information. Moreover, trust has been shown to be an important factor in promoting cross-institutional information sharing and in predicting individual willingness to share [21]. Methods: A research framework based on the Theory of Privacy Calculus and the Theory of Planned Behavior was developed and empirically tested through a cross-sectional field survey from September 2022 to October 2022 in the Yangtze River Delta region, China. iPEGR: perceived effectiveness of government regulation. Health care data involve sensitive information such as laboratory data, family history, medical history, and medication history. The more positive the attitude, the stronger the subject norms and perceived behavioral control and the stronger the willingness to perform a specific behavior [15]. Significance was determined at a P value of <.05. Shi J, To ensure the validity of the questionnaire, the researcher predetermined the criteria for judging invalid questionnaires: (1) The questionnaire included a few general knowledge questions, which would be invalid if the responses were incorrect; (2) all the answers in the entire questionnaire were the same; (3) logical consistency was checked for inconsistencies. Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. If it is basically consistent, the validity is good; if it is seriously inconsistent with the hypothesis or if the commonality value of an item is lower than 0.4, the validity is poor and the item may be considered for deletion (Multimedia Appendix 3). This paper contributes to expand the literature on patient privacy concerns and willingness to share personal health data by integrating the Theory of Planned Behavior and the Theory of Privacy Calculus. A research framework was proposed by integrating the Theory of Planned Behavior and the Theory of Privacy Calculus, as well as corresponding measurement instruments. The estimated model explained 90.5% of the variance in sharing willingness. The partial least squares approach for structural equation modeling. Subjective norm refers to external social pressures felt by an individual when considering whether to perform a given behavior, and it reflects the effect of the significant others or groups on that individuals behavior. To illustrate the robustness of the framework, we report a series of surveys performed using the framework to measure the effect of the following 9 factors on willingness of sharing data: perceived benefit, perceived risk, perceived effectiveness of government regulation, monetary benefit, moral motive, information control, privacy concern, trust, and demographics. Yuan, Xueming The Theory of Planned Behavior has been widely used in behavioral research on new technologies and information systems. Maternal and Child Health Journal is the first exclusive forum to advance the scientific and professional knowledge base of the maternal and child health (MCH) field. The Journal doubles its impact factor for the second consecutive year. Path analysis was performed in SPSS Amos, version 24.0 (IBM Corp) to validate the research model and test the research hypotheses. Information Systems Research 2006 Mar;17(1):61-80 [, Awad, Krishnan. As a result of privacy concerns, health care organizations and patients are cautious about sharing and utilizing health care data. The data sets from the questionnaires generated and analyzed during this study are not publicly available due ethical concerns but are available from the corresponding author on reasonable request. Although a detailed description of HIE technology was provided to ensure that respondents understood the context and purpose of data sharing, this does not guarantee that patients have read the privacy policy carefully, even if they have had relevant experience [58]. As technologies used for information exchange advance, patients are concerned about organizations disclosing, transferring, and selling their personal information. Data sharing connects and integrates medical information systems and public health data. There would be an opportunity for investigators to experiment in the future by varying the details provided regarding the risks and benefits associated with personal health data sharing, in addition to learning from experiences in other areas where data sharing is significant. Public Health Genomics 2017;20(5):293-306 [, Crespo ?, del Bosque IR, de los Salmones Snchez MMG. (3) This study examined the factors influencing the willingness to share personal health data among patients in the maternal and child hospital, and further validation from the perspective of different stakeholders and application scenarios may be considered to compare the differences. J Appl Psychol 1990 Mar 21;75(1):51-59 [, Darquy S, Moutel G, Lapointe A, D'Audiffret D, Champagnat J, Guerroui S, et al. This will serve as a reference for the early and orderly implementation of medical data sharing. dPEGR: perceived effectiveness of government regulation. Medical records that guide and teach. According to a survey of 932 Chinese residents, the participants were not inclined to share EHRs. These control variables were gender, age, education level, department, household income, perceived health status, experiences of information leaks, experiences of sharing personal health data for scientific research, experiences of sharing personal health data for health care services, place of residence, and hospital level. Initially, it was applied to electronic commerce, but now it is flourishing in the field of information systems. IJIED 2019;5(4):7-24 [, Vandenbroucke JP, von Elm E, Altman DG, Gtzsche PC, Mulrow CD, Pocock SJ, STROBE Initiative. The core hospital was a tertiary specialized hospital in Shanghai, while the member hospitals were 4 secondary maternal and child health hospitals randomly selected in the Yangtze River Delta (eg, Shanghai, Zhejiang, Jiangsu, and Anhui). In response to the participants suggestions, we removed the words marked as ambiguous and modified the questions to ensure they are clear and easy to understand. IDIS 2009 Oct 01;2(1):39-63 [, Malhotra NK, Kim SS, Agarwal J. Internet Users' Information Privacy Concerns (IUIPC): The Construct, the Scale, and a Causal Model. International Journal of Maternal and Child Health (MCH) and AIDS (IJMA) Global Health and Education Projects, Inc., The Center for Global Health and Health Policy Verified email at. If the same upward trend persists, impact score may rise in 2023 as well. Interconnecting health care data is impossible without the technical support of hospital informatization, and accordingly, different levels of informatization result in different patient experiences and levels of satisfaction. Sharing medical data for health research: the early personal health record experience. Descriptive statistics, frequencies, percentages of collected data, chi-square statistics, and logistic regression were conducted using SPSS Statistics, version 24.0 (IBM Corp). The content validity index: are you sure you know what's being reported? Res Nurs Health 2006 Oct;29(5):489-497 [, Brislin RW. Objective: This study aims to investigate patients willingness to share personal health data at different levels of maternal and child specialized hospitals in China, to propose and test a conceptual model to identify key influencing factors, and to provide countermeasures and suggestions to improve the level of data sharing. JMIR Med Inform 2019 Nov 26;7(4):e14050 [, Kokolakis S. Privacy attitudes and privacy behaviour: A review of current research on the privacy paradox phenomenon. Structural equation modeling was used to assess the reliability and validity of the measurement as well as to test the research hypotheses. Read More. February 2022, issue 2. Sci 2014 Aug 22;43(1):115-135 [, Zhong Q. By constructing a theoretical model and validating it with empirical data, we aim to elucidate the mechanisms underlying the willingness of Chinese patients to share personal health data. To further generalize this framework, future work may expand the object, content, and scope of the empirical study. N Engl J Med 1968 Mar 21;278(12):652-7 concl [, Xu H, Luo X, Carroll JM, Rosson MB. The subjective possibility of sharing or planning to share personal health care data. International Journal of Information Management 2016 Aug;36(4):531-542 [, He Y, He Q, Li L, Wang W, Zha W, Liu Q. Int J Med Inform 2016 Apr;88:8-17 [, Wang T, Duong TD, Chen CC. The journal publishes articles covering various . Previous research has found that the societal benefits of data sharing outweigh considerations of individual privacy and security [16]. Furthermore, a test of discriminant validity was conducted using Fornell-Larcker criteria as well as the heterotrait-to-monotrait ratio. The Journal is interested in original research in the area of maternal and child health, both within the US and from other countries. In this study, patients who have experienced personal health information leakage and tertiary hospital visits are more likely to share their health information with health care providers. Patients must consent to the sharing of their data, and the policy should ensure that all information is shared transparently and completely. 2021 (2022 update) 2.319. A privacy paradox suggests that individuals intentions to share information are not directly related to their actual behavior, and that other factors must be recognized as mediators [60-62]. As this is primarily a journal devoted to population health, we are not interested in clinical case studies, in papers that are exclusively clinically focused, or in research that does not have an obvious public . The Cronbach coefficients ranged from 0.735 to 0.884 (privacy concern, =.790; information control, =.851; perceived risk, =.735; trust, =.782; perceived benefit, =.884; moral motive, =.840; perceived effectiveness of government regulation, =.847; monetary benefit, =.773; and sharing willingness, =.783), all of which exceeded the cutoff value of 0.7, indicating internal consistency [32,33]. 10.2196/46562 The manuscript submission deadline is 31 May 2023. INTR 2020 Feb 24;30(3):811-843 [, Esmaeilzadeh P. The Impacts of the Perceived Transparency of Privacy Policies and Trust in Providers for Building Trust in Health Information Exchange: Empirical Study. Journal of Maternal and Child Health - CiteFactor This is a cross-sectional field study to investigate patients willingness to share personal health data. N Engl J Med 2018 Jun 07;378(23):2202-2211 [, Weitzman ER, Kaci L, Mandl KD. The platforms of various hospitals are largely constructed independently and have mixed quality because there are no unified standards for health information sharing. MATERNAL AND CHILD HEALTH JOURNAL impact factor The questionnaire included 2 partsdemographic characteristics and multiple-item scales. Patients with no prior experience with personal information disclosure and those who have tertiary hospital visits were more likely to share their health data. Third, a self-report of willingness to share was assessed in this study, therefore there may have been a social desirability bias occurring. June 2021, issue 6. Based on the model fit indices (2/df=8.982, RMSEA=0.063, RMR=0.037, GFI=0.911, NFI=0.919, CFI=0.928), it was evident that the hypothesized model needed to be modified to be more accurately fitting. This work was jointly sponsored by grants from National Natural Science Foundation of China (grant 72074146), Science and Technology Commission of Shanghai Municipality-Shanghai Sailing Program (grant 21YF1451600), and Shanghai Jiao Tong University School of Medicine Science and Technology Innovation Project (grant WK2326). PMID: In recent years, the Chinese government has devoted considerable attention to the application and development of health care data, even though data sharing is not a government-controlled information technology in China. By weighing the risks and benefits, the balance between data application and privacy security must be considered. Most Chinese patients are willing to share their personal health data, which is primarily motivated by moral concerns to improve public health and assist in the diagnosis and treatment of illnesses. As part of the effort to promote the rapid development of health care, data producers are required to provide health care data for scientific research and clinical practice. Nevertheless, data sharing raises concerns regarding the privacy and confidentiality of personal health information, which affect the willingness of patients to share information. Content validity and interrater reliability were established. Chicago, IL: American Marketing Association; 1982 Jan Presented at: American Marketing Association Educators Conference; March 1-3, 1982; Chicago, IL p. 405-409, Henseler J, Ringle CM, Sarstedt M. A new criterion for assessing discriminant validity in variance-based structural equation modeling. The theory of planned behavior. Organizational Behavior and Human Decision Processes 1991 Dec 21;50(2):179-211 [, Aitken M, de St Jorre J, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. Information Systems Research 1991 Sep;2(3):192-222 [, Chin WW. Employment in the health care sector, experience with EHRs, understanding of the benefits of sharing health data, and awareness of potential risks all affect patients willingness to share their EHR data [9]. Maternal and Child Health Journal Impact Factor: | Exaly In another survey conducted by the China Youth Social Center, 88.8% of respondents reported that their data had been improperly processed [40]. Special Issue "Frontiers in Maternal and Reproductive Health" - MDPI Accordingly, we propose the hypothesis that the perceived effectiveness of government regulation will reduce patients perceived risk and increase their willingness to share their personal health information. It assumes that a persons behavior is a nonpurely rational behavior that is difficult to predict, and that individual behavior intentions are influenced by attitudes, subjective norms, and external circumstances. In addition, this study indicates that perceived risks outweigh perceived benefits, patients have a strong concern about data sharing, and are aware of privacy protection concerns. This study was approved by the Ethics Review Committee, Shanghai Childrens Hospital, Shanghai Jiao Tong University (approval number 2021R077-E01). From choosing baby's name to helping a teenager choose a college, you'll make . Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project. The latest impact factors list will release in june 2023. The differences in perceived risk may be attributed to the particular results of this latent variable within the health care context, or the fact that data sharing involves different types of information [53], or different kinds of respondents, or they may also be explained by the fact that perceived risk and willingness to share are mediated by other variables [1] that need to be investigated further in-depth in the future. Sharing willingness can be positively affected by perceived benefit, perceived risk, moral motives, and perceived effectiveness of government regulation. The validity of the theoretical model was confirmed via a cross-sectional field survey. As shown in Table 2, female patients accounted for 78.40% (1615/2060) of the total, age range was mainly 31-40 years (972/2060, 47.18%), education was mainly undergraduate (918/2060, 44.56%), and self-assessed health status was good (1238/2060, 60.09%). It has been demonstrated that the final model has improved significantly over the initial model, which would provide a more objective and comprehensive representation of the relationship between the theoretical model and the empirical data. The Theory of Planned Behavior is one of the most widely used psychosocial models for predicting and explaining intentions and behaviors. In: Cyber Crime: Concepts, Methodologies, Tools and Applications. Maternal and Child Health Journal | Submission guidelines - Springer Indian Journal of Child Health | Impact Factor | Indexing The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Computers in Human Behavior 2015 Mar;44:103-117 [, Hsu CL, Lin JCC. Numerous studies in the fields of e-commerce [11], social networks [12], location-based services [13], and scientific data sharing [14] have confirmed a significant negative relationship between perception of risk and willingness to share. To avoid misunderstandings related to wording, a professional translator translated the questionnaire from English to Chinese, followed by a back-translation [31]. The International Journal of Maternal and Child Health (MCH) and AIDS (IJMA) is a multidisciplinary, global health, open-access journal. International Journal of Maternal and Child Health and AIDS (IJMA) Structural equation modeling was used to evaluate the degree of fit of the model. Journal of Medical Internet Research - Factors Influencing the Sharing Hence, this study argues that it is also applicable to the study of willingness to share data in health care. The factor loading coefficients indicate the correlation between the constructs and items. The paper questionnaires were answered anonymously and empirical data were collected on the spot from September 1 to October 30, 2022. To determine whether the correspondence between constructs and items was consistent with the research hypothesis, factor rotation was conducted according to the maximum variance method based on the criteria of characteristic roots greater than 1. Conclusions: This study contributes to the literature on personal health data sharing by integrating the Theory of Privacy Calculus and the Theory of Planned Behavior. Prof. Zhenyu Yang and Prof. Gilberto Kac will be the Guest Editors for this special issue. The journal encourages submissions from the research community where emphasis will be placed on the originality and the practical impact of the reported research.