Transformation in Digital Cultures

What is the soft impact of Chinese Internet hospitals on patient data?

Introduction

China issued relevant policies in 2018 to support and encourage the development of Internet healthcare. Coupled with the catalysis of Covid-19 this year, the state issued a policy in February that clearly stated that eligible Internet hospital expenses should be included in the scope of medical insurance payment (Shecongtong, 2020). For a while, Internet hospitals have become a major trend in China. According to a survey by the 21st Century Business Herald (2020), because of beneficial policies, the untapped market and the epidemic, Internet healthcare will breakthrough in 2020, and the industry will enter a period of rapid growth of standardized development in the future.

With the encouragement from the government, almost all Chinese Internet giants such as Alibaba, JD.com, Baidu, Tencent, and Huawei have all cross-border business deployment (Dongmai Network, 2020). The current form of China’ s Internet hospitals is a combination of offline hospitals and E-commerce. This form is encouraged due to the fact that the offline medical forms are unable to keep up with the demands of public medical care and it is due to the development of digital technology that makes it easier accessible. Offline medical care is controlled by the state, so patient data is held by national basic medical facilities. In the Internet hospital organization structure, it is the Internet company that controls the overall situation. Therefore, the Internet company is in control of the patient’s data.

This article aims to explore the soft impact of Chinese Internet hospitals on patient data in the early stages of the development of Internet hospitals. After all, as Swierstra (2015) said “as it is often easier to avoid future harm than to repair past harms” (P.6). Of course, due to the initial development and adjustment stage, the industry still lacks a systematic investigation (Yuan He, 2017), and the assessment of possible future impacts can only be highly speculative (Swierstra, 2015).

Literature Review

Since Internet hospitals is still a very new topic around the world, in this section, I will present relevant scholars’ arguments on digital platforms, user data, and soft impacts, and apply them to construct the theoretical framework for the Internet Hospital research in this article.

Purpose of using user data

Marres (2017) proposed that the key feature of today’s digitalization is to capture and analyze a large amount of life data (p.68). According to the research of Verhulst & Andrew Young (2018), about 90% of the world’s data were generated and used to solve the human issues in the past two years. Matskis (2019) believes that data is collected with broad consent, but users do not understand the implication of all the different ways of data usage.

Digital data is being widely used in social research due to the improvement of usability and the simple and quick operation of collection and analysis. Jim Gray (Microsoft, 2009) divides the paradigms of scientific research into four categories. The fourth type of paradigm is data-intensive scientific discovery, which uses big data for scientific research. Data is currently used in scientific research in all aspects of our lives.

Matsakis (2019) mentioned that today’s data is often used as a comparison with oil because it can become the driving force of the most profitable company. Data can generate commercial profits for Internet companies. Sharon (2017) also agrees with this, “The ‘real’ value of (big) data lies not so much in its embodiment of a new scientific method or paradigm, but rather its value is framed in terms of monetary resource, as it benefits corporate profit” (p. 1696). Jordan (2020) also discussed the monetization methods of using data on various digital platforms from the perspective of digital economics. For example, because Facebook has a large amount of user data and monetization benefits generated through algorithms, it has a non-negligible power and significant impact on society and the industry.

User Data and ‘Soft’ Impacts

Swierstra (2015) divides the impacts of technology into hard impacts and soft impacts. The main difference is that hard impacts can be quantified, undisputed damage and direct causality are clarified, and the risk and liability subject are manageable. The soft impact lies more in the user relationship, which is a qualitative impact that changes over time. Swierstra (2015) refers to the mutual influence of technology and morality as technomoral change, and this is a kind of soft impacts. This “soft” impacts cannot be ignored due to the higher human needs and the increasingly “intimate” relationship with technology. One of the example of soft impact he mentioned is that new technologies are collecting all kinds of data in ways and speeds that we can’t imagine, which creates a privacy risk (p. 6-9).

Swierstra (2015) proposed that we can anticipate the moral issues that may arise from new technologies. Verbeek (2006) also proposed that ethical issues should be consideration in the early stage of technical product design. Swierstra (2015) proposes two methods of anticipation from a macro perspective, including story prediction and technical mediation. While Kamphof (2017) also gave possible solutions from specific examples of caregivers in southern Holland solving customer privacy problems. That is to understand the different meanings of ethical issues in different contexts, and based on different meanings, to implement solutions with a positive attitude. Therefore, we can consider and analyze the research on the possible soft impact of patient data in Internet hospitals into the actual use of patient data on online platforms.

Methodology

As mentioned above, because Internet hospitals is a very new technology platform and organization, there is not much related literature for research. This study will use semi-structured interviews in a qualitative approach to collect data. In qualitative interviews, the face-to-face in-depth personal interview format is a form of encouraging interviewees to describe rich experiences and phenomena, while leaving analysis and explanation to the interviewer. The purpose is to contribute to the development of theoretical knowledge (Warren & Karner, 2005). Therefore, this method is very suitable for the investigation and analysis of the actual use of Internet hospital patient data and the moral issues that it may cause in this study.

Due to the discussion involving the internal situation of this new industry, I chose to interview a 25-year-old Internet hospital platform marketer who mainly serves Ali Health, one of the leading Internet hospital platforms in China. As a marketing staff of the Internet hospital, the interviewee has a more mature understanding of the status quo of the entire industry and the specific situation of the platform on which she works on, the organizational structure of the platform, and the market feedback received by the platform. However, the interviewee is not a technical developer of the platform, so she cannot answer some specific ethical problems caused by technical defects and related solutions. Moreover, due to the nature of her work, although the interviewee has concerns about the moral impact of Internet hospitals, she may have stronger positive attitudes towards developers and promoters, and the interview is subjective and one-sided to a certain degree.

Data and Analysis

In this section, based on the above theoretical framework, I will introduce the interviewees’ understanding of the use of patient data in Internet hospitals and analyze the possible moral impacts. According to the classification, the data is mainly sorted from the two directions of medical research and commercial use, and will be shown in the following through specific quotations of interviewees. The analysis of the research question will also be carried out from these two directions.

Patient data and medical research

When the interviewee was asked about the main advantages of Internet hospitals over offline medical care, she specifically mentioned the treatment and tracking of tumors. She mentioned that due to the special circumstances of the tumor, long-term medication, daily management and postoperative recommendations are required. In addition, the characteristics of general oncology patients who have long-term professional doctors whom they trust, make the development of Internet hospitals in the department of oncology especially attractive. However, regarding the use and controversy of the data on cancer patients, she said:

Due to the characteristics of oncology, the oncology department is currently the department with the most users on the Ali Health platform. The advantage of the oncology department of the Internet hospital is not only the online follow-up of patients, but also a process of online tracking. For some special cases, according to the needs of customers, we will provide medical assistants to track the whole process, advise monitor and control the patient’s condition. Therefore, Internet hospitals collect all the medical data of patients. Since tumor disease is now the first major type of disease that threatens human life, these data have great research value. (2020)

Mataskis (2019) proposed that “Health records, social security numbers, and banking details make up the most sensitive information stored online.” Medical data using for human science research, and the advancement of human medicine is not a new topic. However, in the case of Internet hospitals, this type of medical data is collected and stored by online platforms, that is in this case, Internet companies. As a potential user, I have my reservations about this. Therefor I asked the interviewee about the patient’s attitude towards this, and she answered:

Generally, patients believe that their data should only be used for personal medical use, and that the individual’s primary doctor owns the data. But because of the characteristics of Internet hospitals, Internet companies naturally want to collect these data and own it. Not every patient wants their case to be in a medical research speech conference, and the Internet hospital platform is different from the traditional platform because it does not have enough trust in the hearts of the general public. Therefore, many patients will raise questions about Internet hospitals data collecting and using data for research. (2020)

It can be seen that even from a general perspective, the use of patient personal data for medical research is beneficial to other patients and future patients. But because of the online platform as the protagonist of data collection, people still have the problem of trust. This may be related to the negative news on the use of data on a large number of digital platforms, so I asked her whether Internet hospitals have taken measures to deal with this:

Like other digital platforms, AliHealth or other Internet hospital platforms will first consider the user’s privacy notice and declaration of consent . Due to the characteristics of Internet hospitals, when you enter the platform for diagnosis and treatment, real-name authentication is definitely required. At this step, the user’s personal information and location information have been collected. Internet hospitals will certainly display information on the use of information (data) and inquiries about opinions on whether it can be used for research purposes while collecting information. However, after our investigation, it came to light that although most patients or their family members have questions about whether the data is actually used for research purposes, to what extent and how it is used in research, and they also believe that there is a risk of abuse of personal privacy, however not many users will read the detailed privacy notice and declaration of consent. (2020)

For developers, designing it according the Privacy notice and declaration of consent and privacy-friendly services is very important. Currently, more and more organizations are working on this goal. However, users did not give them the attention they thought they needed. Although opinion polls show that people are deeply concerned about data use and its privacy issues. Law professor Eric Goldman points out that people’s “stated privacy concerns diverge from what they do” (Solove, 2008). This is similar to the situation with social media. Although people are aware of the privacy risks of social media, social media is still flooded with a large amount of user data, including text, pictures, audio and video. People voluntarily and actively publish their personal information on social networks and disclose private details of their lives on the Internet.

Patient data and commercial use

From the patients’ distrust of Internet platforms mentioned by the interviewees and the concerns about whether Internet hospitals actually use patient data for medical research, I tried to follow the user’s possible concerns and asked her about whether the patient data will actually be used for other purposes:

The Internet hospital can be called a hospital because it has actually realized the closed loop of medical procedures, and this is actually one of the reasons why most Internet platforms will actively join the industry. Internet companies hope to turn the entire medical process into a closed business loop and they hope to drive other services they already have with it. For example, Ali Health hopes to promote Ali pharmacy and Ali distribution business. For the purpose of monetizing this Internet hospital, patient data will be shared with other business departments of the platform itself. (2020)

The data platform will cooperate with other self-owned service departments and even other companies to share data for monetization. This means that even if users realize that Internet hospitals store and use their personal information and patient data on the platform, they cannot determine the specific direction of use. This can be demonstrated by the example of Mataskis (2019). When someone sends a vial of saliva to 23andme, although the person knows that they are sharing their DNA with a genome company, they may not realize that it will be resold to a pharmaceutical company.

My interviewee herself works on the Internet hospital platform, so she just shared the situation of data sharing between business departments within the platform. Nonetheless, it has a real impact on patients:

Due to your registration information on the platform and related disease information in the consultation record, the pharmacy on the platform may still “persist on” sending you “relevant” medicine and medical care information after you are no longer sick. In addition, for example, Ali’s drug delivery services, due to the phenomenon of business outsourcing in the current delivery market to third parties, there will always be information leakage due to one or more reasons, and you may be bombarded by more medical advertisements, especially for patients with chronic diseases who need medicine for a long time. (2020)

Large digital platforms like Facebook have also been criticized in the high-profile data-sharing transaction scandal, which allowed personal data to access other companies for commercial gain (BBC, 2018). Therefore, the privacy impact of various digital platforms due to the purpose of data use cannot be underestimated. However, distributing and selling data is still completely legal, and they are still largely unregulated (Mataskis, 2019).

Through the number of mentions by the interviewee, we can see the interviewee’s awareness and concern about the “soft” impact of privacy. However, when asked what specific measures are being adopted to avoid the impact, she said:

Due to the particularity of medical treatment, Internet hospitals must adopt a real-name system. It can be said that what can be done at present is to satisfy the basic right of users to know about their data being collected. And we will conduct a survey on the platform users time to time for their input and feedback, especially when new functions are launched and before functions are adjusted. Hope that through the efforts of all parties to improve the platform-related functions. (2020)

Due to the use of data by Internet companies, a series of user privacy issues have arisen. It can be found that the developers of Internet companies maintain an active understanding of these and seek answers, for possible solutions to this soft impact, it can refer to the opinions of Verbeek (2006), which is carried out at the current design stage, collecting and considering the opinions of various roles in the technical social relationship and making adjustments and improvements. In addition, relevant regulatory agencies and scholars can also propose normative rules, such as the relevant regulations on data and research proposed in the Ethical Guidelines 3.0 formulated by The AoIR IRE 3.0 Ethics Working Group (2019). Although this “soft” impact is difficult to resolve, from a social perspective, in addition to moral and technical mutual mediation, it may also be necessary to regulate from a legal perspective and prevent potential related crimes from occurring.

Discussion

In this section, I will summarize and discuss the results of the above data display and analysis.

The user data usage direction of Internet hospitals mainly includes medical research and commercial use. Medical research is an important purpose for Internet hospitals to collect and analyze data. At the same time, the tracking and collection of patient data by Internet hospitals is also a reason that is beneficial to patients’ own diagnosis and treatment. The patients can track their own condition more, and the doctor can track the progress better. This can be seen from the case of the oncology department. However, because the Internet hospital is controlled by a digital platform to control the organizational structure of the medical system, users will question the organization and specific implementation of this research use for privacy abuse. This aspect can be avoided as much as possible through the platform’s privacy-friendly service measures, but there will also be situations where users’ privacy concerns and their actual behaviors do not match.

It is very common for the user data of digital platforms to be used for commercial purposes. However, it is difficult for users to understand the actual use of patient data in the way that digital platforms monetize through data sharing and cooperation. This is even more triggered patients’ distrust of the Internet hospital platform. In addition, the commercialized sharing and cooperation of Internet hospital data has actually brought privacy concerns to patients, which is reflected in the harassment of a large number of related advertisements.

It can be seen that the soft impact of Chinese-style Internet hospitals on patient data is mainly manifested in privacy issues. However, through this research, we have also noticed that although we are aware of the privacy impact of Internet product platform data usage on users through anticipation. But in fact, it has not yet received effective legal supervision. Therefore, it is necessary to in cooperate moral impacts into the functional design of the platform at this initial stage. In addition, it is necessary to attract the attention of relevant regulatory authorities and academic institutions to anticipate risks and establish relevant regulations and have strict government oversight.

Conclusion

In this article, I conducted a qualitative interview with a marketing staff of an Internet hospital to understand the direction of user data processing by Internet hospitals in the early stages of development in China and explore the possible soft impacts. Through the compilation of the general theoretical framework of data usage and technical soft impact in the entire digital platform field, and the qualitative interview content implemented in the Internet hospitals, it can be seen that the main soft impact on the use of patient data is privacy issues.

Since we are currently only conducting interviews and surveys from the perspective of platform promoters, if we want to understand the current status and development of China’s Internet hospitals in a more comprehensive manner, we need to further investigate and study more of these beneficial roles from multiple parties involved.

(2) Comments

  1. grijspaardt says:

    Dear Serana,

    I think you have a very interesting research here! As I am from the Netherlands myself, my knowledge about Internet hospitals is very limited, and I enjoyed learning about this through your paper a lot! I think the ethical and moral risks that are involved when using these Internet hospital services are very interesting and relevant for research. In your qualitative interview, you spoke with an interviewee that worked for a commercial Internet hospital. This brought very interesting and knowledgeable insights on the matter. For future research, it might be really interesting to focus more on the user experience, as this could be a great addition to your current paper!
    Additionally, it might be interesting to look at the spreading of this service on the rest of the world as well. You have a great understanding of Internet hospitals in China through your current research. As this service is now first fast growing in China, as you explain, it might be interesting for future research to see how this has an effect on other parts of the world!

    All the best,
    Julia

  2. balaska says:

    Dear Serena,

    I found your topic really interesting and fresh!

    You are clear about the moral and ethical risks outlined in the paper, as you connect them with the Internet hospitals and privacy issues. As I come from Greece, this idea is pretty new to me, and I actually found myself having the same concerns while reading the paper. Especially the interviewee’s point of view made me think of this matter from a specific perspective that I would never myself think of. For further research, I would really find it interesting to focus on a more all-rounded user experience and practice, so that a holistic approach on the effects and ethical matters is achieved. It would be really fascinating to know more about patients’ aspect as well, and finally, compare the positive and negative implications by using both users’ practices and the commercial and research perspective. Of course, I would agree with Julia, that as you seem to have a good understanding of Internet hospitals in China, it would be very inspiring to examine this practise in other countries given the different backgrounds and cultures.
    Again, thank you for this interesting paper!

    All the best,

    Eleni Balaska

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