At the start of the project, the CWC asked a number of questions, which were intended to set a baseline for evaluation. However, these turned out to be a rich source of ‘data’ in and of themselves.

Below are transcripts that CWC members have edited and agreed to release to the world.
[If you wish to use or quote them, please ensure you use the whole unedited quote and attribute to The Community Wellbeing Collective, Wester Hailes (2023) CC BY-NC-ND ]

What do you think of when you hear the word data?

M: I  think of things that I don’t want to read about a collection of numbers or words or things that someone’s put together and not necessarily for the benefit of individuals. 

I’ve not had much experience of using data with real benefit to myself or community around me in my personal experience of 41 years on earth.

R: data makes me think of recording storage and online data is maybe advancing a bit too fast and real quick no fully understanding how our information is being processed like GDP and these cookies and things are not fully understanding all these things just know it’s something to do with storing information and yeah it makes me feel a little bit overwhelmed and don’t quit know how it’s gonna affect me or if it will affect me later I’m just hoping that it won’t and leaving it at that.

Jo: okay yeah, I understand Data as the storage of vital information. It could be

information of a firm or an institution or even an individual. It could be in digital form or

Bookkeeping.

J I think that in a lot of cases the sharing about what gets called mental health is like a healing act in itself and then I don’t feel that when we think about the sharing of data. So then I think it needs to have some kind of like an interview it needs to have another purpose or to be made in something that’s healing like healing for the world and our society. I think it would be useful to understand if there’s trends, which I think there are, in who experiences what kinds of struggle, emotional struggle and I think that that intersects with a lot of other oppressions and with class. And I think it’s important that we can have that understanding but I guess this kind of ancestral knowledge or sometimes I think we need to know things that are impossible and like really know them and I don’t think the data can catch that or I’m curious about if they can capture these things and this kind of the knowledge of lived experience and how we do break cycles.

So like who I would Trust with data I guess… well we do a lot of things that is by and for the people so I guess who I would trust with data is the people, people who have a shared struggle with me or shared aims and a shared one and desire to change what’s happening in the world that’s who I would trust with data. And so I think being involved in the process is the only way that you can know that and that kind of knowing each of our in the processes and even if that’s on a very large scale and you don’t literally know a person who is looking at it.

The other who I don’t trust with data is I guess people who set up things that collect data that I don’t think I trust. So I can remember when I was like kind of seeking different kinds of treatment for mental health stuff like always being given the same survey over and over at the start of every appointment that is the same questions and that takes a long time and there is not a healing way of sharing and everything is rated from one to ten and it’s like; well how does that in any way communicate my struggles and my joys and all of these things? So I think if that’s the way your collecting data I don’t trust what you’re doing with that data because I’m like – that’s bad data, it doesn’t capture anything for me. So I guess literally that is Doctors is who was collecting that data of me so I guess I don’t trust doctors with my data. I would say and I also don’t trust this system when there’s like massive profit involved in pharmaceuticals and antidepressants which I think I think all tools that are available to us, if we can choose them freely including antidepressants and any kind of medication I think like we should have access to a knowledge to all of the tools that are out there, what I don’t think should be happening is companies profiting massively out of that and then GPs giving you them in a five minute appointment when there’s no counseling available and like I’m like well is that because they make profit? And like if they if a drug company can say 90% of people are depressed then that means that they can maybe I don’t know get permission to make more anti depressants get a deal from the government get something like that and make more money. Whereas like who are the people who are allowed to say 90% of people are depressed we need better housing? so I don’t I yeah it’s actually surprising me now that I’m talking how little I trust that whole system with my mental health data 

J: When I hear the word data I feel surprised because I’ve done quite a lot of work for this commission and this was the first time when I had the question posed to me like that – what do you think about data: and I remembered that like that was my mum’s job was like kind of managing data for children services like just like admin and an office and like it just really struck me that like it is really important to be able to say things like Bradford has a 50% child poverty rate this where she worked where we’re from which I wasn’t necessarily the data that she collected but it just kind of framed it reframed it like that for me and made it a bit more closer like thinking about who we know who works with data and like yeah how how we might need it to be able to tell stories and truths and to advocate for change and then in general the way I feel about data is like resigned and confused as in like I’m someone who like with all of the cookies and everything like I just click like except except except I’ve just like kind of resigned myself to be like they know everything about me every Snapchat anyone ever sends is stored at Snapchat HQ and it’s all out there and like that’s the world we live in now so and I know that I know people who do take a lot of care to only to protect their data and so like I know that that is possible but it’s just something that I feel just a bit resigned to because it’s quite mysterious to me so I’m just like you can have it whatever and I guess something else I think about data is to do also like with social media and how like like Facebook is free but it’s like one of the biggest most profitable companies in the world like what is the product and I think the product is Our Data because they sell that to advertisements and then where that intersects with mental health is like in I don’t know like like literally things can happen well like it can tell from what you’re searching what you’re doing that you’re on your period and then it’ll market different things to you and that feels very invasive and very like manipulative and also even I don’t know advertisements for like there’s one called better help like advertisements for counseling services and stuff like that I find quite sinister sometimes even though like if they help people I’m so glad for that but it’s just something about seeing like advertisements for messaging service therapies in a world where therapies are under funded and sometimes the adverts are like can’t talk to your friends about your mental health like come to better help and like I just I don’t know that’s where all that’s quite sinister for me and yeah so I feel about data some quite a lot of distrust but also kind of acceptance but not a good acceptance like resignation to like they just know everything about me and that’s just how it is which like I’m sure anyone even marginally more computers I’ve even me would be like that’s not true stuff acting like that so I’m also curious and want to learn 

F: I think about data in relation to research, for example, and the responsibility one has when handling or collecting data to be careful with it because of the ways in which that data could be shared and used. I alway feel a bit anxious about data, because it is very sensitive material in terms of privacy. Data feels dry to me when detached from contexts and stories and from people.

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(Image by Peggy und Marco Lachmann-Anke from Pixabay)

(Image by Peggy und Marco Lachmann-Anke from Pixabay)