My Data, My Choice, My Insights: Women’s Requirements when Collecting, Interpreting and Sharing t…
Sophie Grimme, Susanna Marie Spoerl, Susanne Boll, Marion Koelle
CHI 2024: The ACM CHI Conference on Human Factors in Computing Systems
Session: Menstrual Tracking and Health
HCI research has been instrumental in enabling self-directed health tracking. Despite a plethora of devices and data, however, users’ views of their own health are often fragmented. This is a problem for women’s health, where physical and mental observations and symptoms are strongly intertwined. An integrated view throughout different life stages could help to better understand these connections, facilitate symptom alleviation through life-style changes, and support timely diagnosis: currently, women’s health issues often go under-researched and under-diagnosed. To capture the needs and worries of self-directed tracking, interpreting and sharing women’s health data, we held workshops with 28 women. Drawing upon feminist methods, we conducted a Reflexive Thematic Analysis to identify six central themes that ground opportunities and challenges for life-long, self-directed tracking of intimate data. These themes inform the design of tools for data collection, analysis and sharing that empower women to better understand their bodies and demand adequate health services.
Web:: https://programs.sigchi.org/chi/2024/program/content/148283
Pre-recorded video presentations for Papers at CHI 2024
hi I’m Sophie I’m a research associate and PhD candidate at office Institute for information technology in alen bber Germany I’m very excited to be presenting our work my data my choice my insights women’s requirements when collecting interpreting and sharing the personal Health Data also on behalf of my co-authors Susanna marish Susanna B and Mar K HCI research has been instrumental in developing novel Technologies for Reproductive health and other concerns of marginalized gender Health these range from women centered perspectives on menal tracking lack in the work VL of foxed ey or period positive designs like Curious Cycles from VTO at ey there’s also work about digital artifacts that support during fertility tracking like ovom or during pregnancy like the memory Stone our there’s also research that focus on normalizing experiences like butel at alwg on reframing menopause however all these work concentrate on one specific life phase only this is a limitation because data generated in one phase can be relevant for a later phase of life or throughout the entire lifetime even though the long-term collection of Women’s Health Data could offer the potential to support for instance the detection of risk factors for post menstrual osteoporosis or faster diagnosis of endometriosis current Technologies are not yet designed for long-term use device abandonment or emergence of new technologies can hinder lifelong data keeping in addition it is crucial that women have full control over their Health Data because it is highly sensitive and may have political implications but so far there’s only limited understanding of how women can be empowered to maintain control and make informed decisions based on their lifelong Health Data by prior work in HCI has already addressed data needs across different life phases a holistic investigation of women’s requirements for collecting accessing and controlling Health Data across different life faes is still lacking in this work we present results from 10 workshops with 28 women of different ages our work contributes insights about the needs and worries of self-directed tracking interpreting and sharing Women’s Health Data we divided our participants into small groups of up to four participants that were of similar ages and life faes we decided for this group formation to facilitate common topics of conversation and a comfortable atmosphere we then used the Lotus Blossom technique during the workshops to guide the participants to a structured brainstorming activity in which they discussed their opinions with self chosen pament in three rounds they started to talk about the types of data that are currently or potentially relevant to their Women’s Health afterwards they decided on three topics that are personally relevant to them and that they want to discuss further in the following second round they discussed how these data are currently collected and why people might opt either for or against collecting such data finally the participants brainstormed about the how these data are shared and used currently or might be used in the future drawing upon feminist HCI methods we focused on our participants individual subjective experiences applying a data focused lens and conducted a reflexive semantic analysis we identified six Central themes which grant opportunities and challenges for lifelong self-directed tracking of data which I will explain in the following slides our participants shared instances where data can foster engagement with the self and support them in finding answers to yet unknown or unspoken questions Julia who experienced very heavy men bleeding reports on her experience of being able to make her own decisions about her health by monitoring the amount of menstrual blood she shared due to the IOD I experienced heavy bleeding I have been using a menstral cup for a while to track it this way I can gauge how much iron and b12 supplements I needed she follows a vegan diet which makes it important for her to track her nutrients although all of our participants expressed the need and desire to better understand their bodies some reported consciously abstaining from collecting too much or any data they said that self tracking made them feel under pressure or that existing Health tracking Technologies would not support them sufficiently with they need the second theme comparing data can reassure results from from experiences shared by our participants in which they have asked themselves whether a situation they experience was normal in these situations comparing their experiences to those of other women provided them with reassurance and helped them for instance more than doing online search queries Andrea reflected on her menopause and what would have helped her she said my mood swings were so severe I really wished I had a social network to consult with because no one told me about this moreover the workshop’s discussions also highlighted how inter interaction with trusted ones can act as a driver to seek medical advice Nell who was later diagnosed with endometriosis shared through conversations I realized that I might have more pain than other friends and even more symptoms than others so I eventually scheduled an appointment with a gynecologist for that for us as HCI researchers this shows that collecting data that can serve to compare experiences can help to categorize and evaluate one’s own experiences and provide reassurance in cases where an experience is not normal it is important that complaints are taken seriously but our participant shared various instances where they experienced so-called medical gas lighting this refers to healthc Care Professionals dismissing a patient symptom which can lead them to doubt their own experiences our participant shared that collecting data helped them to prove a symptom sta for instance said I went to the doctor the other day and luckily I had a photo of the problem it made me feel more confident ident and proved that it was really a problem she also reported that she is not yet satisfied with her Obin and doesn’t feel comfortable with her current Medical Care Anna added to that by sharing that she feels to be taken seriously when she can bring data and evidence to the doctor and thus contribute to the diagnosis these instances of our participants highlight how data can provide validation by capturing experiences in real time in Inu which can support women in gaining more confidence in conversations with doctors anticipating and acting medical gaslighting another Finding from our workshops is the participants who had established a positive relationship with the healthcare providers were open to delegating data analysis or data storage Kya shared that in her personal life she’s worried about data ending up with strangers or third parties but in the medical context it would be fantastic if everyone had access to all the information participants with less positive relationships however voiced reservations about the collection of the Health Data also when engaging with digital Technologies some participants find themselves in a trade-off for Jasmine for example who is diagnos with pmdd the benefit of her app outweighs her concerns which lead her to accept data sharing she said it means that they are probably sharing my data but I rely on it so much to know when my ovulation and PMs are happening so I’m willing to accept it in summary there’s a connection between the level of trust regarding the physician or app and the need for data control for us as HCI researchers this means that in order to build this trust women need to be involved in decision- making based on the data and that the handling of the data needs to be transparent our participants also discussed how they would share the Health Data not only with medical personnel but also with trusted people from their personal Network they would share for instance their period data for giving their partner insights when they want to get pregnant or for contraception Maria who already needed a lot of support from a personal environment due to to physical mental illness to us you should talk to your partner about what contraception you’re using and if it’s cyclical share your cycle with them too this illustrates how sharing relevant information with others can distribute both the responsibility for navigating through situations as well as the weight of decision making some of our participants were aware of the existing gender imbalances and health research we observed that our participants inclination to provide data arose from a desire to actively participate in reshaping narratives around marginalized Health Hannah for instance point out that there have been enough women in the world that should be common knowledge by now she also reported on a health condition where she did not find relief from medical care for a long time which led her to educate herself elaborating on this experience she further reported that she would gladly donate all data on her psycho and health for research and education and take whatever you need the more data we have the better this shows that there is an interest of women donating the data to empower themselves but also others which can be interpreting as donating data can be a feminist act summing up we discussed that Women’s Health requires a holistic approach to house data that incorporates qualitative aspects alongside quantitative measures such as period monitoring and activity levels current Technologies often overlook this holistic perspective but there’s a need for platforms that integrate the multiple aspects of women’s health including mental and physical wellbeing at different stages of life we also underlined the importance of acknowledging the diversity of women’s health experiences the notion of a singular normal should be challenged women often question the normality of their bodily experiences which can lead to delayed diagnosis and feelings of insecurity emphasizing the validation of individual experiences and providing platforms for open exchange can help women become more confident in their health journey and acknowledge the variability and complexity of what is considered normal at different life stages in experiences we also emphasized the significant burden and responsibility that women bear in managing the Health Data including data collection and maintenance as well as privacy concerns this work is intensified by having to deal with unclear data ownership regulations and the potential stress associated with collecting Health Data this highlights the importance of developing digital tools that minimize the burden and facilitate data sharing and delegation of responsibility finally we discussed the importance of considering the evolving needs and opportunities for health data collection at different stages of a women’s Life Technologies for lifelong Data Tracking and Women’s Health are still evolving and despite the challenges that exist incorporating the lifespan perspective into technology development can provide valuable insights and benefits both in the present and respectively in summary our contribution includes analysis of requirements for lifelong Data Tracking and a discussion of opportunities and challenges that comes with lifel data for more details please do check out our paper or feel free to reach out to me via email thanks for listening to this presentation