After a day of meetings with LC and disability researchers and community, I can't help but reflecting on how we have seen patient centred arguments emerge across so many fields and what this means for LC /1
The LC community share so much knowledge in online groups. They know what treatments seem to help/that some can hurt/what supplements and vitamins help them etc.
There is so much knowledge in those groups, often a great deal more than people get from their doctors /2
There is so much knowledge in those groups, often a great deal more than people get from their doctors /2
Across multiple fields we have seen a convergence around the value of lived experience and experiential knowledge.
Disability justice has, on the back of HIV/AIDs, rightly argued for 'nothing about us without us'.
Your research and clinical tools, measures /3
Disability justice has, on the back of HIV/AIDs, rightly argued for 'nothing about us without us'.
Your research and clinical tools, measures /3
and programs are not only shallower without lived experience input, they're potentially (and often) harmful.
This is a hard won position - from decades of harm that has emerged from when researchers and clinicians don't include lived experience and lived expertise. //4
This is a hard won position - from decades of harm that has emerged from when researchers and clinicians don't include lived experience and lived expertise. //4
Within LC groups I see not just sharing information and knowledge - I see care.
We are talking about a group of people where it is not uncommon to have 10 functional minutes in a day.
To devote those to care and knowledge sharing with others breathtaking /5
We are talking about a group of people where it is not uncommon to have 10 functional minutes in a day.
To devote those to care and knowledge sharing with others breathtaking /5
It has value within those communities, but it also has so much value beyond them. The knowledge they have to share is about their disease, it's about improving clinical and research practice, and beyond. /6
The disability justice and rights movement has taught us, or been trying to teach you, that this knowledge matters.
This is a hard won position - from decades of harm that has emerged from when researchers and clinicians don't include lived experience and lived expertise. /7
This is a hard won position - from decades of harm that has emerged from when researchers and clinicians don't include lived experience and lived expertise. /7
In other fields, health sociology and medical sociology has for decades now argued that patient knowledge is important for understanding diseases (Susan Sontage amongst them). /8
In some areas of healthcare we have seen a push for practice based evidence, also driven by parts of the public health research community .
This work argues that knowledge must be a two way exchange.
That knowledge that comes from /9
This work argues that knowledge must be a two way exchange.
That knowledge that comes from /9
institutions will always be limited, and needs to be augmented by experiential knowledge.
Consider for example, RCTs are not the right methodology for every problem.
There are treatments that cleared RCTs that had to be removed from market, and there are treatments... /10
Consider for example, RCTs are not the right methodology for every problem.
There are treatments that cleared RCTs that had to be removed from market, and there are treatments... /10
that didn't clear RCTs or Cochrane reviews that people find work wonders for them.
The population is a bell curve, an RCT works to the median.
I would add to this that RCT designs and clinical research /11
The population is a bell curve, an RCT works to the median.
I would add to this that RCT designs and clinical research /11
do not deal well with complexity - in fact they bracket it out.
But disability, chronic illness etc are usually very complex - the human body is a complex system. Add to that, that in these situations we have many comorbidities.
We do not design research to account /12
But disability, chronic illness etc are usually very complex - the human body is a complex system. Add to that, that in these situations we have many comorbidities.
We do not design research to account /12
or these things.
@trishgreenhalgh for example has talked about a crisis in evidence based medicine, precisely because comorbidities are growing and RCTs as they stand work poorly for this.
Given this confluence of fields, driven both top-down by experts and bottom-up /13
@trishgreenhalgh for example has talked about a crisis in evidence based medicine, precisely because comorbidities are growing and RCTs as they stand work poorly for this.
Given this confluence of fields, driven both top-down by experts and bottom-up /13
@trishgreenhalgh the long covid field needs to catch up.
I see people die in these groups each week, and increasingly I see people take up VAD.
People cannot wait for the slow craw of institutional processes of knowledge production. /14
I see people die in these groups each week, and increasingly I see people take up VAD.
People cannot wait for the slow craw of institutional processes of knowledge production. /14
knowledge exists within these communities that is valuable and important. These are also whole human beings with the ability to reason, love and care, even when functional capacity is diminished. Respecting this is part and parcel of moving our knowledge and practice forward./15
This community still has so much to give - to each other, to clinical knowledge, to our broader understanding of disease /16
Many people have arrived at working in the LC space without a background in disability research, treatment or rights.
Clinicians and researchers need to learn about these movements - they exist for a reason. They are important, they are protective, they are productive /17
Clinicians and researchers need to learn about these movements - they exist for a reason. They are important, they are protective, they are productive /17
It's hard to start a human rights movement when you can't get out of bed, but goddamn this community is trying.
I ask you to listen to them, on here, in their FB groups. What has worked for them, what has not, why and to include them as peers. /End
I ask you to listen to them, on here, in their FB groups. What has worked for them, what has not, why and to include them as peers. /End
@criprights
@DavidJoffe64
@PutrinoLab
@ejustin46
@elle_carnitine
@1goodtern
#medtwitter please pass along
@DavidJoffe64
@PutrinoLab
@ejustin46
@elle_carnitine
@1goodtern
#medtwitter please pass along
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