The Community Computing Consortium (CCC) is thrilled that council vice chair Katie Siek will be speaking on how we need to think of menopause more inclusively at the “Using Artificial Intelligence to Better Understand Menopause” Women’s Health Workshop.
People of all genders can experience menopause and people within care networks are also important to support people going through menopause. Specifically, as a human centered computing researcher, Siek believes knowing what people’s experiences are, working with people and believing people are crucial to tackling ongoing challenges in menopause research.
Here is a sneak peak of her talk:
Knowing what people’s experiences are
We can do this by scraping social media, forums, and web searches. We also have to acknowledge that there are equity issues in that we are only seeing data by people with this technology and accessing these systems. Also, ethically, we have to think about how when someone posts their experience, they do not necessarily believe they are a research participant.
Working with people
Menopause and aging is still stigmatized. Although we can use interviews, focus groups, and design workshops, people may want some protections. In addition, people going through menopause have multiple life demands that make participating in studies challenging. We can engage people asynchronously and remotely while protecting their privacy. My work with Asynchronous Remote Communities (ARC) can help bring people together on a platform, participate in research about menopause, while deciding on how much identity they want to disclose.
Believe people
Often in human centered computing methods I’m asked, “How do you know this is true?” First, menopause experiences in healthcare are full of people’s stories about not being believed, their menstrual cycles cannot be that heavy. They are too young for hot flashes. The hot flashes are not that bad. If you think it is bad now, wait until you are really in menopause. They can take hormone therapy as long as they know their risk. These experiences are people’s experiences that can be used to help inform education, support, and care.
Second, in the age of technology facilitating remote study participation while acknowledging stigma, we have to be careful. My lab has created a participant validation guide to assist researchers in carefully vetting participants.
Siek hopes experts leave her talk and the workshop with a sense of urgency toward creating new research opportunities for menopause.
Visit the workshop website for more information.
