The final project: so far yet so near
Last week, I got the chance to speak to some of the partners at the event in Summerhall, which was really helpful in generating some ideas for the final project.
The two partners I have decided to reach out to are:
- Data for Children UK
- Edinburgh Women’s Aid
Interest areas:
My interest in these two partners stems from an overall interest in questions of feminism, data, and healthcare. I have found the digital advancements in healthcare (Sweden is undergoing a massive transformation just now – investing millions of SEK in streamlining healthcare) interesting in relation to AI and IT systems for the public sector being outsourced to private companies, often without input from healthcare staff, and the inevitable digital divide that comes with social services being moved online. I’ve also been curious about the issues of data gaps, especially gender data gaps (data against femicide project in Latin America and the underrepresentation of women’s data in clinical trials for example).
Although I’m excited to really get stuck in the project once it’s up and running, I won’t lie about my anxiety around these initial stages of the journey. I’ve always struggled with being indecisive and relatively slow at the start. My dissertation supervisor during my bachelor’s degree wasn’t even surprised when I changed my thesis topic for the seventh time when it was a month left of writing 🙂 (no worries, it all went fab in the end). Why am I writing this? Because this it’s a (public) promise to myself to not overthink and instead use that energy to move the project forward.
Initial conversations:
In the case of Data for Children, we spoke about the somewhat paradox of the organisation’s reliance on population data to understand underlying causes of issues in inequality and poverty in the northern UK; but the difficulty in acquiring this data in some cases due to a variety of reasons (experiences of having their data used for scrutinisation, groups in society having access to technology, or not engaging with societal processes where data would be collected, to name a few) – all resulting in data gaps. As we had such limited time, we decided to speak further over another meeting.
In the case of Edinburgh Women’s Aid, the conversation was not focussed on a project, but it was more personal and how my interests and background could be a potential match – so I have fewer tangible ideas to go on there.
Needs assessment:Â Â
Literature I would need:
- Data gaps – how they appear, why it is a problem, what can we do about them
- Data privacy – how can we protect individual’s data, how can we communicate that personal data can be safely used
- “Data for good” – any literature that highlights ways in which data can be ethically used for social impact
- Vulnerable/exposed groups in society
- Exclusion and Inclusion
Electives I hope will help me; ethical data futures, insights through data, data science for society, inclusive society, exclusion and inequalities, coloniality of data
That’s all I have for now! 🙂
#violet
wow I’m very interested in the digital transformation of Sweden’s healthcare infrastructures. When reading materials of covid tracking, I also find many countries, like Singapore, outsource this section to third-party companies. Looking forward to know more about the advancements!
And I share the same experience of struggling in deciding my proposal in my undergraduate hh. I saw your great energy and leadership in the discussion. I think your project will be fabulous!
Thanks for this reflection, Cajsa. You may feel indecisive, but this is a very structured and proactive start to identifying potential topics!
First of all, don’t feel pressured to dive in too narrowly at this stage. You’d be completely fine simultaneously to explore two, three, or even four potential topics for the next month or so, to map out their contours, what general literatures are available, whether there’s a good fit with a partner, whether the implied methods seem feasible and fun… and so on. Maybe you could use a few blog posts to go down a few rabbit holes and see where they end up (not required, just an idea!).
I do find that paradox of using datasets to try to understand inequalities–while being fully aware that those datasets have major gaps that reflect inequalities–super interesting and of great potential for a project. Do you gravitate more toward exploring those population data for inequalities within them (a more quantitative study, or perhaps mixed methods), or toward exploring why and how certain groups get (or choose to be) excluded from those datasets (implying a more qualitative study)?
I’ve put together a great list of readings and initiatives we’ll dive into for Inclusive Society, many of which cover the ‘data for good’ and data gaps angle. I’m trying to get that library list up and running asap, but for the moment here are a few interesting initiatives, including some activist approaches to work with communities to use data for resistance, or creative methods to highlight data gaps:
* https://www.sovereign-bodies.org/mmiw-database
* https://data2x.org
* https://www.manifestno.com
* https://mimionuoha.com/the-library-of-missing-datasets
* D’Ignazio, Catherine & Lauren F. Klein. 2020. Data Feminism. Cambridge, MA: MIT Press.
* Fotopoulou, Aristea. Forthcoming. ‘Understanding citizen data practices from a feminist perspective: Embodiment and the ethics of care’. In Citizen Media and Practice, edited by H. Stephansen and E. Trere. Oxford: Taylor & Francis/Routledge.
* Wylie, Sara, Wilder, Elisabith, Vera, Lourdes, Thomas, Deborah, & McLaughlin, Megan. 2017. ‘Materializing exposure: Developing an indexical method to visualize health hazards related to fossil fuel extraction’. Engaging Science, Technology, and Society 3: 426-463.
Hi Cajsa,
All the potential topics you listed sound great! I am also a very indecisive person, and I am currently very jealous of the progress you have made. The gaps in data in regards to vulnerable populations is incredibly frustrating and a (seemingly) never ending cycle. There is a non-profit research organisation called Data & Society (https://datasociety.net/) that has a lot of cool papers and blog posts that talk about addressing these gaps and the consequences of not facing the gaps head on, you might find some other research papers/literature that can help you later on.
Also, I am currently in a course called “Data Mining for Social Research” and I’ve found it incredibly helpful for pulling data out of qualitative sources . It might help with directly addressing data gaps if you are interested!