Share mental health data? [Transcript 3 of 4]
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 ]
How do you feel about your mental health data being shared and who would you be comfortable sharing it with and who wouldn’t you be?
M: That’s a big question. How do I feel about my mental health information being shared? I think it’s probably quite important that we share and tell stories about our experiences and I’m more than happy to share that within community within people with people I feel safe and trusted with and have conversations with and I have very much distrust when it comes to our Medical Systems so I don’t really feel comfortable sharing it with them at all due to my experience and so it’s probably the least likely place that Iwould share my mental healthwould be an doctors surgery for example and I’d probably more likely to go to a friend or someone I feel safe to talk to.
R: with me it kind of depends on a lot if I was anonymous for example I’d probably be willing to hear more but if it was video I’d probably be very reluctant if it was control if I believed it would be controlled in a way where it was just for a small setting and I might keep it more brief depending on how I feel it will be used or if I thought or uncomfortable than I might alright it also depends on how I’m feeling like I might have be having a bad day so if you catch me on about or might just you learn to not see anything and I might just because I’ve not had enough sleep or other days if I’m trying to say something really important it’s harder for me on a day where I’ve not slept well because that makes me actually more emotional which then makes it harder for me to open up if I’m talking about something upsetting so then I’d be more reluctant say anything if I know I will just break down. I am more willing to share with people who I know are this way. I am not willing to share much if I use my name because this makes me feel vulnerable and unsafe if it relates to my personal experiences.
Jo: It is very important to know how your data is shared. For me I wouldn’t mind sharing
my data but I would like to know how my mental health data is shared. Am open sharing
it with friends, colleagues, and some people in the community whom I feel will benefit
from it. I wouldn’t want to experience limitation or exceptions from certain benefits due
to the fact that my mental health data was shared To the wrong People or department.
So I say I would like my consent and what impact it will have on me.
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
F: I think I feel quite reluctant to share my personal mental health data especially with institutions or with medical services because I’m always thinking where this data could travel to and how it could be used. I don’t feel very comfortable sharing data with people I don’t know very well. For example I would feel comfortable in sharing some data in this group or with CWC members because I know we have some shared values and commitments. I know that CWC is a brave space in which mental health stories could be shared for good purposes. When the context of sharing data becomes bigger then it becomes also more confusing. I also recognize that sharing data can be useful for research developments on specific issues, and I’m wondering if there are different ways to collect, share and communicate data?
Related Blog Posts
What is Knowledge? [Transcript 1 of 4]
What is ‘data’? [Transcript 2 of 4]
We are mental health experts [Transcript 4 of 4]
(Image by WOKANDAPIX from Pixabay)
(Image by WOKANDAPIX from Pixabay)
