My Data, My Choice, My Insights: Women's Requirements when Collecting, Interpreting and Sharing their Personal Health Data

Title of the Paper

My Data, My Choice, My Insights: Women’s Requirements when Collecting, Interpreting and Sharing their Personal Health Data

Paper Information

• Topic Area: Collection, interpretation, and sharing of women’s health data, particularly focusing on design requirements for long-term tracking and applications related to women’s health.
• Keywords: Women’s health, data privacy, self-tracking, feminist HCI, health informatics, life cycle

Research Background and Issues

• Identified Problems or Challenges:

  • Women face systemic disadvantages in accessing healthcare services and controlling their health data.
  • Current technologies are predominantly male-oriented in design, lacking a comprehensive perspective on women’s health across their life cycle.
  • Women’s health data often involves sensitive and private information, yet the privacy and sustainability of long-term data collection have not been adequately addressed.
  • There is a lack of systematic research on women’s health data needs, access methods, and application scenarios across different life stages.

• Importance of the Research:

  • A life-cycle perspective on women’s health data can help identify health issues across stages, improve health management, and promote early diagnosis.
  • This field is crucial for designing digital health services that are friendly to women, positively influencing their self-awareness and health decision-making.

• Motivation and Related Work:

  • Existing research often focuses on specific life stages, such as menstrual tracking, pregnancy health, or menopause, but lacks an integrated cross-stage perspective.
  • Feminist HCI aims to provide inclusive support for women’s health-related issues through design and technology.
  • Literature reviews reveal gaps in technology and research regarding data retention methods, integration across devices and platforms, and exploration of long-term health needs over the life cycle.

Solution

• Proposed Method or Solution:

  • Conduct workshops to gather women’s requirements for self-tracking health data and its use, including data types, recording methods, and sharing scenarios.
  • Utilize the "Lotus Blossom Technique" for structured discussions and identify needs and challenges through Reflexive Thematic Analysis.
  • Integrate feminist theory into the research design to capture the diversity of women’s health experiences, emphasizing data control and transparency.

• Innovative Aspects of the Solution:

  • Introduced six themes to describe women’s health data tracking needs and challenges throughout their life cycle.
  • Applied life-cycle theory, focusing on data rather than specific tools, addressing changes in data needs across stages and the feasibility of long-term tracking.
  • Leveraged feminist methodologies, enabling female participants to collaboratively construct research and summarize requirements based on their own experiences.

• Implementation Steps and Techniques:

  • Recruit 28 women from diverse age groups and backgrounds; discuss their health data needs through workshops.
  • Use iterative thematic analysis, generating data through sticky notes and discussions.
  • Categorize the current status of data collection methods and ideal data-sharing models, proposing design-level recommendations.

Research Outcomes

• Specific Findings:

  • Identified six key themes regarding women’s health data needs across their life cycle:
    1. Data collection aids in understanding physical changes and mental states.
    2. Data comparison provides psychological reassurance (comparing others’ data to confirm whether symptoms are “normal”).
    3. Sharing and using data serve as tools for validation and legitimization, countering neglect or dismissal in the medical field.
    4. Data sharing demands transparency and relies on trust.
    5. Sharing data can distribute responsibility, such as providing accurate information to partners for joint reproductive decision-making.
    6. Donating data is viewed as a feminist act to promote social equity.

• Advantages:

  • Provides a comprehensive analysis of long-term women’s health data needs, surpassing traditional research focused solely on specific stages (e.g., pregnancy or menopause).
  • Expands understanding of technology design by integrating quantitative and qualitative methods, advocating for data control centered around “my data, my choice.”

• Experimental and Evaluation Results:

  • Recorded women’s health experiences and related data needs across age groups through workshops, forming six common and refined themes.
  • Design recommendations emphasize multi-layered qualitative and quantitative information, transparency, and feasibility of long-term data collection methods.

• Limitations and Future Directions:

  • Limitations: Research on women’s health data is region-specific, primarily focusing on Germany and Europe, which may limit the generalizability of results.
  • Future Directions:
    • Design an ecosystem supporting integrated data across life cycles, reducing the labor cost of user data management.
    • Further explore similarities and differences in women’s health data needs in a global context, emphasizing sustainability in technology.
    • Promote the development of intelligent data processing technologies to automate personal health data analysis while preserving privacy rights.