Password-protected posts
I have at least half a dozen or so unfinished posts in my drafts folder that I've been afraid to publish for fear that some of the more sensitive and personal content around health and mental health may be mined by academic researchers looking to 'give voice' to my experiences without my consent.
It feels such a very unfair situation; there are so many issues around mental health that I'm desperate to talk about, and on which I want to hear from people in similar circumstances to mine. I'd like to be able to start a conversation in the here and now as I would if I were talking to friends in the pub, but with people who, often for health-related reasons, aren't able to meet up in 'real' life to discuss all these issues face-to-face. But I'm hesitant because I really don't want to have my words seized upon and analysed, twisted and interpreted and set down in a permanent scientific record by someone who doesn't know me, has never met me, not even to say 'hello'. And yet there is such an appetite for data-mining among academic researchers, and apparently very few controls at institutional level to consider the risks and the impact on the researched, the ones whose voices are taken and given without even our knowledge, let alone our consent.
This is a subject that has been extensively discussed on mental health Twitter, there's much I have to say around the legality and ethics of data mining in health research and I will make public those thoughts another day when I have the energy for it. Today, I just want to set out what I'm going to do as an interim measure to help me to feel a little safer and freer to talk about the more personal things that matter to me.
I've decided to put a loose password protection on posts that cover sensitive topics, with a clear reminder at the top of each protected page that I do not give permission for the content to be used or reproduced for teaching, research or publication. The password is 'INTEGRITY'. I have no current plans or desire to restrict access to these protected posts; I just want to add in an extra step along the way to make my wishes clear. I realise that my request is not legally binding, but I think it gives a clear starting point for discussion with your institutional ethics committees, your funding bodies and publishers, if any of you should choose to disrespect me.
The majority of my posts, including all future posts in the planned series on why I no longer take part in academic research projects will be fully open and I will display a Creative Commons License on each page, setting out the permissions for their use.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
It feels such a very unfair situation; there are so many issues around mental health that I'm desperate to talk about, and on which I want to hear from people in similar circumstances to mine. I'd like to be able to start a conversation in the here and now as I would if I were talking to friends in the pub, but with people who, often for health-related reasons, aren't able to meet up in 'real' life to discuss all these issues face-to-face. But I'm hesitant because I really don't want to have my words seized upon and analysed, twisted and interpreted and set down in a permanent scientific record by someone who doesn't know me, has never met me, not even to say 'hello'. And yet there is such an appetite for data-mining among academic researchers, and apparently very few controls at institutional level to consider the risks and the impact on the researched, the ones whose voices are taken and given without even our knowledge, let alone our consent.
This is a subject that has been extensively discussed on mental health Twitter, there's much I have to say around the legality and ethics of data mining in health research and I will make public those thoughts another day when I have the energy for it. Today, I just want to set out what I'm going to do as an interim measure to help me to feel a little safer and freer to talk about the more personal things that matter to me.
I've decided to put a loose password protection on posts that cover sensitive topics, with a clear reminder at the top of each protected page that I do not give permission for the content to be used or reproduced for teaching, research or publication. The password is 'INTEGRITY'. I have no current plans or desire to restrict access to these protected posts; I just want to add in an extra step along the way to make my wishes clear. I realise that my request is not legally binding, but I think it gives a clear starting point for discussion with your institutional ethics committees, your funding bodies and publishers, if any of you should choose to disrespect me.
The majority of my posts, including all future posts in the planned series on why I no longer take part in academic research projects will be fully open and I will display a Creative Commons License on each page, setting out the permissions for their use.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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