At the first meeting I (Sam Fellowes) spoke about How service user involvement should relate to the abstract nature of science. This blog post is a summary of what I said and some of the questions asked.
People have unique experiences. This is one advantage of service user involvement in psychiatric research. Someone who has the psychiatric diagnoses can tell you what it is like to be a person with the diagnosis. This provides additional information that is not present if we just think about a psychiatric diagnosis.
The personal experience, however, could be seen to conflict with a goal of science. One goal of science is to create generalisation that abstract away from particular instances. For example, scientists will produce theories about storms even though every single storm will be different. Every single storm will be a different size and speed, and will consist of different materials which follow particular paths. Having abstract theories about storms helps us make more widely ranging predictions about future storms and the understanding of multiple particular storms can be turned into theories to understand a particular storm. How then should we see the relationship between the particular experience of service users involved in psychiatric research and the aim of abstraction in science?
The first thing to note is that currently employed psychiatric diagnoses are already abstract since there are multiple ways to meet the diagnostic criteria of almost all diagnoses. People with different characteristics of the diagnoses can all receive that same diagnosis. In this sense the diagnosis is very abstract compared to a particular person. Therefore, if we desire to learn about the diagnosis, rather than just particular people, then there is good reason to abstract away from particular people. However, there are alternative to DSM style diagnoses, such as person centred approaches, which aims to describe the person rather than give them an abstract diagnosis.
I argue, however, that there is good reason to abstract in psychiatry. Here are some of the points I raised. The environment an individual is in can effect how this think, feel and act. Since people can change their environment it is helpful to have an abstract indication of how people act in a range of environments. A generalised notion can be used as a starting point to understand how someone will be in a specific environment. Secondly, the characteristics an individual exhibits can change over time so having a general indication of what characteristic people with a particular diagnosis have to help predict which characteristics a particular person in the future may adopt. Thirdly, when assessing different outcomes of therapy different specific people will have different ways of assessing what constitutes success. As such, it is helpful to have an abstract account of what a successful outcome is. These are some reasons to think abstraction is useful in psychiatry.
I also considered how the abstract diagnosis can influence the particular experience of autistic individuals. When I aim to understand myself I often interpret my experiences as being instances of autism. The abstract diagnosis influences my understanding of myself. This has advantages and disadvantages. On one hand, it arguably allows me to attain a more detailed and nuanced understanding of myself. However, this then makes it harder to use my own experience to critique the notion of autism, since the evidence I am using to potentially critique autism has itself been influenced by autism.
Given that abstraction can be useful in psychiatry there then is the question of how to go about abstracting. I see no reason why standard statistical techniques would work, however, value decisions are required when deciding what level of detail is desired and what factors are considered incidental when deciding which factors are put into the statistical analysis. Judging from social media, I do not think that explicit conversations about which values take place in conversations of service users who advocate for participatory research. There are, however, two claims I have occasionally seen made that does not fit my account of abstraction. Firstly, the claim that autistic individual have direct access to autism. This seems a mistake because at most they have direct access to their own experiences whereas autism itself is an abstract concept. Secondly, the (admittedly rare) claim that only autistic people can contribute to research on autism. This seems mistaken if, given the abstract nature of autism, statistical methods should be used and these will typically have been developed by non-autistic individuals.
There was about twenty minutes of questions. There was discussion about whether similar issues occur in relation to physical conditions, whether physical conditions are themselves abstract, whether the abstract diagnosis influences how people interpret their physical conditions. There was also discussion about how we decide who goes into the abstract category given that we cannot just decide that looking at particular people. Also, it was discussed how to make sure that everyone in the abstract category is represented within participatory research, whether some people are more likely to engage in participatory research than others and the consequences of having a non-representative sample engage in participatory research.