General Willingness to Share EHRs
Most respondents in our survey were in favor of establishing electronic health records. However, the percentage of respondents in our survey who would agree to share personal healthcare data between different institutions dropped to less than a half, implying a concern about risks that data transmitting would trigger. The result is similar to studies in other countries. For example, a previous study in Greek revealed the same public doubt: 48.8% of their participants worried that an unauthorized third party would access their personal information. These privacy concerns may arise from the sensitive personal characteristics that EHRs describe, like reproductive conditions or psychological and mind states.
The main result of our work was to show that most Chinese residents hold reservations about sharing them, Which differs from the results of previous studies. In the Chinese traditional culture, privacy was initially equated with stigma, which can be construed as illegal secrets, selfishness, and conspiracy. The usual moral standards are pursued by the ancients, such as "gentleman magnanimous," suppressed The development of personal privacy. Many scholars think that Chinese cultural history is a culture of shame. This kind of incentive mechanism for face, shame, and cultural ideals of saint personality leads to insufficient resources for the legitimacy of privacy. The right to privacy is too challenging to be universally recognized by members of society. With the popularization of the Internet, the influence of traditional Chinese culture on the concept of privacy had declined. For example, a survey conducted by the China Youth Social Center showed that most respondents (88.8%) realized that they had experienced improper processing of their data. Therefore, in contemporary China, where the economy, culture, and social structure are undergoing drastic changes, the awareness of information privacy protection is increasing, and further efforts are needed to promote the sharing of electronic health records.
Factors Affecting Willingness
Although we listed four demographic characteristics in our questionnaire, only one of them was proved to be an efficacious factor that would influence willingness: whether the participant's job is related to healthcare. A study in Macao may help to understand our results: 78% of physicians interviewed believed that EHRs facilitated smooth communication between physicians and patients. Healthcare-related practitioners' support may account for the advantages they tasted during daily practice. However, some previous surveys provided more. They suggested that age or education also could affect willingness. For example, research in the UK declared that the younger participants (25–34 years old) would be more likely to support EHRs than the older ones(35–64 years old). Given that most demographic characteristics relate to local cultures, beliefs, and conditions of sharing EHRs, variations by country are reasonable. Nevertheless, it is worth further investigating public views and preferences based on demographic distribution, especially in China, where healthcare-related administrative decisions and public education would be more effective if demographic differences were considered.
Experiences on EHRs
Our study suggested that participants who have had EHRs established tended to prefer sharing EHRs. Their experiences may have helped them better understand EHRs and gain direct impressions of perceived benefits and risks. Surveys conducted in 2011 and 2013 in the USA also demonstrated that consumers who had used EHRs were more likely to trust EHRs benefits on care quality and less likely to worry about potential privacy threats. This result indicates that expanding EHRs users would assist the promotion of EHRs and further propel sharing of them.
The balance between benefits and risks of sharing EHRs
Respondents of our survey, who agreed that sharing EHRs would benefit healthcare services and related research, were more likely to consent to share their personal data. This result echoed a study from Ireland that found that 89.5% of participants would consent to share their anonymous personal data. They believed that sharing EHRs would help physicians elevate the diagnosis process and specific care. Another factor we found out is worries about potential security threats. Previous studies presented the same observations. Roughly two-thirds of American adults assumed that privacy of personal health data would be undermined during electronic transmission. A survey conducted on 1,000 Americans demonstrated that 41.2% believed EHRs would cripple patients' privacy. Canadian people worried the same. In 2007, nearly two-thirds of interviewees expressed concerns about perceived threats that EHRs would bring to privacy, and this trend remained still in 2012. Similar studies had been conducted in China,the results show that the public has a relatively poor understanding of EHR. 84.69% of the respondents worry that health information might disclose their privacy unintentionally, and 63.55% of the respondents have experienced or heard about data breaches of health information.
Public willingness to share EHRs seems to fluctuate with different situations. Preference for sharing depends on the balance between privacy protection and benefits for society[25–26]. While supporting a certain level of sharing in consideration of the benefits of EHR sharing, there are concerns about the privacy and security of individual health information. Culnan and Armstrong's computational theory of privacy suggests that users who disclose personal information in exchange for some economic or social benefit are assessed to ensure that their private information is not used illegally and that the individual is not adversely affected. In short, users will reveal personal information in a transactional environment if the benefits outweigh the risks. When the privacy risk was little likelihood, or when the risks typically have a significant impact on specific individuals rather than the majority of the general population, people were likely to expect some form of social gain from sharing their health information. For example, when potential security threats were small or only targeted specific persons instead of the majority, the public focus would pivot to expected benefits or social gains of sharing EHRs. As most people acknowledge that sharing EHRs would favor healthcare services, extra strategies to shield privacy will ameliorate public concerns and raise the probability of willingness to share.
In the specific context of China, the Chinese public is very concerned about the privacy of electronic health records, which has become an essential consideration for the public in deciding whether to share health information. At the same time, the public has shown a positive attitude toward the use of health information in the modern trend of network and big data technology, which is also related to the traditional Chinese culture that attaches more importance to collective and public interests. This empirical survey further established that the privacy issue of electronic health records is a factor of great concern in the data utilization of electronic health records. We should strengthen the research and propaganda of electronic health records sharing and utilization policies in the future, increase the protection of personal privacy, and reduce the public's concern about the privacy leakage of personal electronic health records.