Opinion Pursuit-worthy research in health: Three examples and a suggestion, 2024, Wilkenfeld

[Dolphin]

This discusses the PACE Trial among other things

https://www.sciencedirect.com/science/article/pii/S0039368124001213

Studies in History and Philosophy of Science

Pursuit-worthy research in health: Three examples and a suggestion

Daniel A. Wilkenfeld
University of Pittsburgh School of Nursing, Department of Acute and Tertiary, PA, USA ARTICLE INFO

ABSTRACT

This paper, in a nutshell, is a plea for community participation in research along with an adapted idea for how such participation should be shaped and understood.

I will give varied examples of the ways in which scientists viewing a perceived problem solely from an external perspective has led to mistakes.

If we do not properly take into account the knowledge and values of people with a condition, we are liable to pursue the wrong sorts of treatments.

In particular, I provide examples of three ways (exemplified in the cases of “female hysteria”, autism, and chronic fatigue syndrome) scientists are liable to pursue treatment of what they perceive to be at least partially mental illnesses that they/we shouldn’t.

I present the idea of deliberative research—the concept is based on that of deliberative democracy.

The idea of deliberative democracy is that decisions should be made on the basis of reasons that would be acceptable to the target population.

I similarly argue that research decisions should be made on the basis of reasons that would be acceptable to the target population, even if it requires other experts to determine how those reasons are best to be respected in the context of a particular project.

Keywords: Pursuitworthiness Standpoint Epistemology Deliberative democracy Inquiry Criticism

 

[Jonathan Edwards]

I am afraid that the argument presented doesn't work very well. It would require research into delusional paranoid psychosis (which my wife suffered from for a while) to make use of reasons acceptable to people with delusional paranoia. That delusional paranoia will include a deep-seated belief that any trying to present them with reasons about their condition will be lying and cheating (paranoia). It just doesn't work.

The reasons for not using psychological treatments in the cases proposed is that there is no evidence they work.

 

[Hutan]

If we do not properly take into account the knowledge and values of people with a condition, we are liable to pursue the wrong sorts of treatments.

From the abstract, I think the argument is a bit more nuanced than 'you can only study things that are acceptable to the target population'. The wording is 'properly take account of'. There is also the 'even if it requires other experts to determine how those reasons are best to be respected in the context of a particular project'.

So, in the case of people with delusional paranoia, it might be taking into account patient preferences in how the research is done e.g. allowing them to choose the music that is played during a procedure (or if it is played at all), asking them about what is comfortable, as well as consulting with a group of people who have recovered from delusional paranoia or had the proposed treatment, and/or loved ones who are caring for the person about more consequential aspects of the treatment. e.g. what information do family members need in order to give informed consent?

The idea is very much in line with current thinking on capacity in health care - 'taking into account' patients' views doesn't mean 'slavishly following' them. I think it's just a matter of tipping the balance a bit toward the patient - listening, considering their views more than has often been the case. The extent to which patient views are followed in the development of the research will obviously depend on the capacity of the patients and the nature of the research.

 

[Kitty]

The extent to which patient views are followed in the development of the research will obviously depend on the capacity of the patients and the nature of the research.

Yep. Patients won't always know what should be studied or how it should be done, but may be clearer about what shouldn't be looked at or what methods shouldn't be used.

There have been so many missed opportunities and uninterpretable studies in ME/CFS because the cohorts weren't matched well enough or selected on tight enough criteria, or the follow-up period wasn't nearly long enough for an illness with long cycles, or there was too much reliance on subjective outcomes.

 

[Sid]

The idea of deliberative democracy is that decisions should be made on the basis of reasons that would be acceptable to the target population.

This approach presupposes that everyone has capacity which is not true. These sorts of arguments are really dangerous because they tend to be used in anti-psychiatry circles to deny the sickest people the treatments that they need.