IGF 2020 WS #94 Personal Data Protection in Internet Healthcare Service

    Subtheme

    Organizer 1: Jiali Li, Internet Society of China
    Organizer 2: Jing MA, China Association for Science and Technology
    Organizer 3: Rui ZHONG, Internet Society of China

    Speaker 1: Cade Zvavanjanja, Private Sector, African Group
    Speaker 2: Robert Mathews, Technical Community, Western European and Others Group (WEOG)
    Speaker 3: Dušan Caf, Private Sector, Eastern European Group
    Speaker 4: Jing MA, Civil Society, Asia-Pacific Group

    Moderator

    Rui ZHONG, Civil Society, Asia-Pacific Group

    Online Moderator

    Jiali Li, Civil Society, Asia-Pacific Group

    Rapporteur

    Jiali Li, Civil Society, Asia-Pacific Group

    Format

    Other - 90 Min
    Format description: Best practice sharing + multi-stakeholder discussion from multiple perspectives, with classroom seat setting.

    Policy Question(s)

    What are/should be the rights and responsibilities for individuals in determining the use of their personal data, and what right do individuals have to determine their own digital identity? What kinds of action or responsibilities Internet healthcare service providers could take to perfect/perform its user data protection policy? How about government, user protection organization’s roles? What kind of data could be access to and by whom, with patient’s consent or relevant policy permission?

    In the reality, some Internet healthcare platforms are imperfectly constructed and there are many flaws in operation, such as the lack or imperfection of privacy agreements or privacy clauses, the mandatory use of privacy data, and the lack of restrictions on the sharing and transfer of privacy data. Therefore, it is necessary to optimize the services and environment of the Internet healthcare industry and enhance personal data protection through multi-approaches, such as putting forward legislation, strengthening technological innovation, advocating platform/industry self-discipline, and raising user’s awareness/education.

    SDGs

    GOAL 9: Industry, Innovation and Infrastructure

    Description:

    As Internet healthcare industry gradually develops towards market-oriented scale and refined trend, healthcare data breaks the isolation status in traditional healthcare industry, and its scope and extent of use continue to expand and deepen. However, it also accompanies with the risk of the personal data leakage. Internet healthcare platform/service refers to the websites and mobile applications providing online medical-related services based on Internet technology, such as consultation, registration, medicine, physical examination, healthcare, disease management and medical academic. However, some patients’ personal data was under the risk of leakage or directly exposed due to the imperfectly construction of Internet healthcare platforms/services. This workshop will invite multi-stakeholder representatives to discuss how to enhance the protection of personal data in the Internet healthcare service from different angles on legislation, technology, governance, platform self-discipline and so on, and to give corresponding policy suggestions and share best practices.

    Expected Outcomes

    Through multi-stakeholder’ discussion and best practices share, it is expected that personal healthcare data protection policy and implementation advice could be provided and to achieve the related goals of SDGs.

    40 mins allocated to the speakers, and the rest of time for onsite/remote interaction

    Relevance to Internet Governance: Healthcare data breaks the isolation status in traditional healthcare industry, and its scope and extent of use continue to expand and deepen. How to enhance personal data protection in Internet healthcare service needs joint efforts by multi-stakeholders from perspective of legislation, technology, governance, platform self-discipline and so on.

    Relevance to Theme: In the cyberspace, private information on the Internet healthcare platform constantly derived. While the doctors require the health information in need to provide personalized healthcare services to patients, the users can also obtain relevant information by browsing others’ diagnosis and treatment experience. Therefore, the privacy on the Internet healthcare platform includes but not limited to the personal healthcare information of users that identifies specific individuals in real life, the shared healthcare information and the data mining information of commercial value. For patients, personal healthcare data belongs to sensitive information, requiring strict privacy and security needs in storage, usage and sharing.

    Online Participation

     

    Usage of IGF Official Tool. Additional Tools proposed: 1. Post news on our official website and SNS platform before the meeting; 2. Share the workshop info at the IGF booth, if the booth application be finally approved; 3. Invite our partners who also be at the IGF.