My initial idea for the Cause Exploration Prize was essentially the same thing, targetted at ADHD.
Some thoughts:
Calculating outcome uncertainty—Overall, a problem I ran into was cost calculation for every step of the process. Going from pre-existing undiagnosed disorder to diagnosed and well-managed disorder involves a lot of complex, highly uncertain steps. For example, even if you sit every GP down for a 1-hour deep dive on BSD, there’s a lot of reasons why the knowledge wouldn’t translate to improved outcomes. Replicate that uncertainty for the entire treatment process, and it gets super messy.
Anyway, about your proposals:
Your first solution makes sense. It sounds logical, so I do wonder why it isn’t already a thing. I suppose local mental health legislation is sometimes just arbitrary. Regarding the questionnaire, the mental health professionals I’ve talked to do seem quite … passive. Half the session turns into me slowly discussing my mood problems and them telling me it’s not that big a deal instead of following my train of thought. While this only covers BSD, I suppose I’d much rather have a questionnaire shoved in my face that could lead somewhere rather than trying the same generic advice that has limited effect for anyone with underlying disorders.
Your second solution—Fundamentally, I’m not convinced it’s easy to educate professionals into providing better care. What I mean by that is educators and mental health professionals who should know how to handle neurodivergent people inevitably struggle to empathise with every disorder. Everyone starts off with stereotypes of certain disorders and how they “should” act, and I’m not sure I’ve seen a consistent way to debunk these stereotypes. In my case, I’d interacted with dozens of mental health professionals and educators whose job description entailed understanding ADHD, yet I don’t think any of them would have helped at all without my aggressive prompting. It’s almost like teaching people not to be racist, no one is going to think they have bigoted beliefs. Secondly, if you yourself had to prescribe care for people with undiagnosed BSD, you might do really well because you have firsthand experience and plenty of personal research. However, if I asked you to do that for every disorder, I think anyone would struggle. In other words, I’d rely as little on GP behaviour as possible.
I’m most interested in your third solution. In my opinion, interacting with other people who have the same problems I do is far more helpful than trying to communicate with someone who’s basing their judgement on a few lectures they had back in medical school. I find that so much mental wellness advice that should work on neurotypicals needs to be completely adapted for those with mental disorders. Having two normal people with the same disorder talk about what does and doesn’t work for them is more helpful than anything short of medication, in my opinion.
Hence, I really like the focus on personal access to information. A few months ago, I thought about developing scaleable support groups for people with mental disorders. The idea is that people naturally use social media to interact with like-minded people, and the algorithms work in your favour if you want to reach someone with relatable content. This is by no means an easy hypothesis to test, but I posit that a methodical attempt at creating authentic social media communities centred around living with mental disorders (advice, venting, discussing weird quirks etc) would be extremely cost effective in tackling disease burden, by sheer volume of people sharing helpful ideas and seeking help when they otherwise wouldn’t have.
Overall, I think your first suggestion has unknown barriers but is worth attempting, I am very skeptical of your second suggestion and I think your third suggestion is the most interesting. I’d love to discuss this further as I and another person are brainstorming how to create a working intervention in this space. Of course, that’s only because we both have a lot of background building anonymous support forums lol.
And if you’re curious, I eventually scrapped the ADHD idea for this prize and went with advocating for Social Relationships as a metric for EA to consider, because I thought it was a good compromise between neglected emotional impact, universal, provably impactful and relatively easy to quantify.
Completely agreed re uncertainty when it comes to intervention outcomes, trying to get any concrete numbers in order to calculate cost-effectiveness almost made me give up, and what I ended up going with is still very nebulous.
When it comes to intervention 2: I absolutely don’t expect any realistic degree of GP education to suddenly make them competent in giving BSD patients fully adequate support. Perhaps I should have better phrased it as “efficiently informing GPs that the guidelines have changed and that they should follow them” rather than “educating GPs”. In this context, I see educating GPs as a neccessary evil: they are the ones gatekeeping access to medication and who will choose whether to follow NICE guidelines or not. I suspect many of them don’t keep up to date with changes in guidelines, so in order for intervention 1 to have any effect it would need to be followed up with somehow translating it into clinical practice. It would be even better if it could be done on autopilot, where the GP can be a Chinese room completely unaware of what BSD even is, just following a flowchart along the lines of “Depressed? Antidepressants didn’t work? Fill out this questionnaire… Scored high? Here’s lamotrigine, please read the leaflet, next!”. This is why implementing, getting approval for and distributing diagnostic and treatment decision making software to be used by GPs for patients with depression could be very effective—I listed it among the concrete steps to take, but perhaps I should have given it more prominence in the interventions list.
Intervention 3 on its own could definitely contribute to GPs taking the correct action—a plucky patient saying “I have BSD, give me lamotrigine!” would hopefully trigger a flow like “BSD? Let me look that up… Okay, I’m supposed to ask you to fill out a questionnaire. Scored high? Here’s lamotrigine, please read the leaflet, next!”.
I have to confess I’m somewhat biased towards a pharmaceutical approach when it comes to BSD. This makes me see the intervention you suggested (connecting patients with people who have a similar problem) specifically in case of BSD more as a means towards an end (the patient getting enough information to convince a GP to prescribe correct medications) rather than a goal in itself (I imagine in many patients, and in my personal experience, no amount of talking with other sufferers, emotional support, group therapy, self-help info etc. would do much to help, while the correct medication would make the problem dissapear completely—though I admit other sufferers might have the opposite experience, which loops back into the whole outcome uncertainty issue).
Specifically in case of BSD, there would also be the issue that by default the patient would seach for “depression support groups” rather than “BSD support groups”. Actually, it would be brilliant if your solution could help people correctly self-diagnose by making them go through a questionnaire-based decision tree, to later direct them to the appropriate group. Perhaps it wouldn’t even need to be categorical or DSM-based, but use some ML solution grouping people according to the weights they’ve given to various symptoms or other markers.
That being said, I think your idea is very interesting! I’d love to talk more about it and potentially get involved—let’s connect :)
Congrats on the social relationships as a metric proposal, it was a fascinating read!
I get this!
My initial idea for the Cause Exploration Prize was essentially the same thing, targetted at ADHD.
Some thoughts:
Calculating outcome uncertainty—Overall, a problem I ran into was cost calculation for every step of the process. Going from pre-existing undiagnosed disorder to diagnosed and well-managed disorder involves a lot of complex, highly uncertain steps. For example, even if you sit every GP down for a 1-hour deep dive on BSD, there’s a lot of reasons why the knowledge wouldn’t translate to improved outcomes. Replicate that uncertainty for the entire treatment process, and it gets super messy.
Anyway, about your proposals:
Your first solution makes sense. It sounds logical, so I do wonder why it isn’t already a thing. I suppose local mental health legislation is sometimes just arbitrary. Regarding the questionnaire, the mental health professionals I’ve talked to do seem quite … passive. Half the session turns into me slowly discussing my mood problems and them telling me it’s not that big a deal instead of following my train of thought. While this only covers BSD, I suppose I’d much rather have a questionnaire shoved in my face that could lead somewhere rather than trying the same generic advice that has limited effect for anyone with underlying disorders.
Your second solution—Fundamentally, I’m not convinced it’s easy to educate professionals into providing better care. What I mean by that is educators and mental health professionals who should know how to handle neurodivergent people inevitably struggle to empathise with every disorder. Everyone starts off with stereotypes of certain disorders and how they “should” act, and I’m not sure I’ve seen a consistent way to debunk these stereotypes. In my case, I’d interacted with dozens of mental health professionals and educators whose job description entailed understanding ADHD, yet I don’t think any of them would have helped at all without my aggressive prompting. It’s almost like teaching people not to be racist, no one is going to think they have bigoted beliefs. Secondly, if you yourself had to prescribe care for people with undiagnosed BSD, you might do really well because you have firsthand experience and plenty of personal research. However, if I asked you to do that for every disorder, I think anyone would struggle. In other words, I’d rely as little on GP behaviour as possible.
I’m most interested in your third solution. In my opinion, interacting with other people who have the same problems I do is far more helpful than trying to communicate with someone who’s basing their judgement on a few lectures they had back in medical school. I find that so much mental wellness advice that should work on neurotypicals needs to be completely adapted for those with mental disorders. Having two normal people with the same disorder talk about what does and doesn’t work for them is more helpful than anything short of medication, in my opinion.
Hence, I really like the focus on personal access to information. A few months ago, I thought about developing scaleable support groups for people with mental disorders. The idea is that people naturally use social media to interact with like-minded people, and the algorithms work in your favour if you want to reach someone with relatable content. This is by no means an easy hypothesis to test, but I posit that a methodical attempt at creating authentic social media communities centred around living with mental disorders (advice, venting, discussing weird quirks etc) would be extremely cost effective in tackling disease burden, by sheer volume of people sharing helpful ideas and seeking help when they otherwise wouldn’t have.
Overall, I think your first suggestion has unknown barriers but is worth attempting, I am very skeptical of your second suggestion and I think your third suggestion is the most interesting. I’d love to discuss this further as I and another person are brainstorming how to create a working intervention in this space. Of course, that’s only because we both have a lot of background building anonymous support forums lol.
And if you’re curious, I eventually scrapped the ADHD idea for this prize and went with advocating for Social Relationships as a metric for EA to consider, because I thought it was a good compromise between neglected emotional impact, universal, provably impactful and relatively easy to quantify.
Thanks for the insightful comment!
Completely agreed re uncertainty when it comes to intervention outcomes, trying to get any concrete numbers in order to calculate cost-effectiveness almost made me give up, and what I ended up going with is still very nebulous.
When it comes to intervention 2: I absolutely don’t expect any realistic degree of GP education to suddenly make them competent in giving BSD patients fully adequate support. Perhaps I should have better phrased it as “efficiently informing GPs that the guidelines have changed and that they should follow them” rather than “educating GPs”. In this context, I see educating GPs as a neccessary evil: they are the ones gatekeeping access to medication and who will choose whether to follow NICE guidelines or not. I suspect many of them don’t keep up to date with changes in guidelines, so in order for intervention 1 to have any effect it would need to be followed up with somehow translating it into clinical practice. It would be even better if it could be done on autopilot, where the GP can be a Chinese room completely unaware of what BSD even is, just following a flowchart along the lines of “Depressed? Antidepressants didn’t work? Fill out this questionnaire… Scored high? Here’s lamotrigine, please read the leaflet, next!”. This is why implementing, getting approval for and distributing diagnostic and treatment decision making software to be used by GPs for patients with depression could be very effective—I listed it among the concrete steps to take, but perhaps I should have given it more prominence in the interventions list.
Intervention 3 on its own could definitely contribute to GPs taking the correct action—a plucky patient saying “I have BSD, give me lamotrigine!” would hopefully trigger a flow like “BSD? Let me look that up… Okay, I’m supposed to ask you to fill out a questionnaire. Scored high? Here’s lamotrigine, please read the leaflet, next!”.
I have to confess I’m somewhat biased towards a pharmaceutical approach when it comes to BSD. This makes me see the intervention you suggested (connecting patients with people who have a similar problem) specifically in case of BSD more as a means towards an end (the patient getting enough information to convince a GP to prescribe correct medications) rather than a goal in itself (I imagine in many patients, and in my personal experience, no amount of talking with other sufferers, emotional support, group therapy, self-help info etc. would do much to help, while the correct medication would make the problem dissapear completely—though I admit other sufferers might have the opposite experience, which loops back into the whole outcome uncertainty issue).
Specifically in case of BSD, there would also be the issue that by default the patient would seach for “depression support groups” rather than “BSD support groups”. Actually, it would be brilliant if your solution could help people correctly self-diagnose by making them go through a questionnaire-based decision tree, to later direct them to the appropriate group. Perhaps it wouldn’t even need to be categorical or DSM-based, but use some ML solution grouping people according to the weights they’ve given to various symptoms or other markers.
That being said, I think your idea is very interesting! I’d love to talk more about it and potentially get involved—let’s connect :)
Congrats on the social relationships as a metric proposal, it was a fascinating read!