Recruitment for studies

[Wyva]

I thought it might be worth starting a thread on what might be problematic or unethical with regards to recruiting people into studies. Especially but not exclusively in social media.

What actually prompted me to do so was a psychologist who started to recruit people in a LC group I'm a member of. The study is aiming to rehabilitate the "neuropsychological functions" of pwLC through VR and art therapy. It means verbal fluency, memory issues, psychomotor coordination, attention problems, reaction time etc but also "affective" components. And in the description of the study on the website it is stated that a big percentage of pwLC have psychiatric symptoms, depression, PTSD, panic attacks, OCD, anxiety etc.

However, her call presented this mostly as an opportunity to participate in free therapy to improve cognitive symptoms. It was mentioned in the text that this was also a study, but it sounded like some less important side info, barely noticeable. The emphasis was clearly on free therapy.

And it didn't really sound right to me.

(Unfortunately I don't have the exact text anymore, as either the mods or she deleted the post. The mods were very suspicious of her and asked for more details. This is actually one of the post-covid studies financed by the Hungarian Academy of Sciences, they got roughly 80 000 in euros.)

 

[Kitty]

And in the description of the study on the website it is stated that a big percentage of pwLC have psychiatric symptoms, depression, PTSD, panic attacks, OCD, anxiety etc.

This seems to be the nub of it.

If it asks whether a proportion of patients have these symptoms, and passes thorough ethical review, and recruits its subjects with full informed consent, and pursues the question using validated techniques, and reports its findings transparently, it qualifies as science.

But if it starts from a set of assumptions for which it provides no evidential basis, it doesn't. It looks like another bunch of people being paid salaries to propagate their lazy and discriminatory belief system.

 

[Andy]

A study should clearly state that it is a study. I assume that the particular requirements will differ from country to country, but I believe general principles dictate that if you are going to experiment using people, then the people being experimented on need to know this and clearly accept it i.e. give informed consent to the experimentation.

 

[Wyva]

@Kitty Well, they say they base this on follow-up studies. This is the description from the website of the university:

Google translate:

According to follow-up studies, the majority of patients who have been infected with COVID-19 present at least one long-term psychiatric symptom from anxiety, depression, PTSD, panic disorder, obsessive-compulsive disorder or sleep disorders. In terms of neurocognitive functions, deficits in executive functions, verbal fluency, language comprehension, and memory impairments (verbal memory, working memory), orientation and attention difficulties, motor planning disorders, psychomotor coordination disorders, information processing disorders and increased reaction time. The main focus of the present study is the measurement of the affective components and neurocognitive functions of patients with COVID-19 infection, as well as their development with innovative methods

The description of the study on the website of the Academy when it was awarded the research grant (Google translate + me):

Renáta Cserjési, the leader of the research to be conducted at Eötvös Loránd University, points out in the short summary of her research entitled Innovative rehabilitation of the neuropsychological functions of post-COVID patients that the COVID-19 infection does not only cause cognitive and affective psychological problems in the acute phase of the disease, since for most of the patients these disorders persist even after the infection subsides, making their everyday life and their ability to work significantly more difficult. In their research, they want to provide assistance to people suffering from post-COVID syndrome with innovative, non-verbal methods, such as virtual reality-based rehabilitation and art therapy, which help with gamification, emotional involvement, maintaining motivation, and strengthening social support, which help the improvement of problematic brain processes and the treatment of mental disorders. Their aim is to assess the effects of these innovative interventions on the changes in the patients' neuropsychological functions and quality of life.

(These are not what was posted in the LC group.)

 

[Wyva]

One of the LC mods gave me a screenshot of what was posted, this is the actual picture:

Google translate:

Do you have residual complaints after a covid-19 infection?

The E-mind Integrative Neuropsychology Research Group of the ELTE PPK Institute of Psychology offers a free psychological development program for people between the ages of 18 and 85 who have been infected with covid-19!

We look forward to your application if you experience any of the following symptoms:

- Memory disorder, forgetfulness
- Attention problems
- Language difficulties
- Slowed thinking or movement
- Dejection, malaise
- Anxiety, depressing thoughts
- Fear of breathing

The content of the program:

- preliminary assessment
- 6-week weekly psychological development: individual virtual reality-based cognitive development or group art therapy
- follow-up examination at the end of the program and 3 months later

Application: posztcovidkutatás@gmail.com​

It is not mentioned at all in the picture that this is a study, you only notice it if you see the email address, which means "postcovidresearch@...

So it is not fully hidden information but otherwise this is presented as a free therapy program for long haulers and I believe they should absolutely include the information that this is only investigative and experimental. People may even misunderstand the email address and believe this to be some therapy proven or deemed promising for good reason by the researchers, if there is no further explanation.

Now she also added her own short comment to this photo, however I know this group well and that a comment (the length of about one sentence at least) is required otherwise the algorithm will not let the post out. So I don't know if that is the reason why it was added or not.

Dear Group Members! The Integrative Neuropsychology Research Group operating at ELTE offers a free art therapy or virtual reality-based cognitive development program to people struggling with post-covid complaints as part of a research. Our next art therapy group starts on May 8, the virtual reality-based development can be started at any time. You can apply or inquire at postzcovidkutatás@gmail.com.
​

This is better as here it is mentioned that it is part of a research, however, it is still presented as some opportunity to participate in some free therapy. But my main issue is that this is not included in the photo itself, which may (probably will) get shared without the comment in social media.

 

[NelliePledge]

Clear communication is even more important when dealing with people who might have cognitive difficulties.
Informed consent requirement should be the highest priority whereas this material is prioritising marketing.

 

[bobbler]

This seems to be the nub of it.

If it asks whether a proportion of patients have these symptoms, and passes thorough ethical review, and recruits its subjects with full informed consent, and pursues the question using validated techniques, and reports its findings transparently, it qualifies as science.

But if it starts from a set of assumptions for which it provides no evidential basis, it doesn't. It looks like another bunch of people being paid salaries to propagate their lazy and discriminatory belief system.

Good point on skewing the sample by basically advertising free therapy for those with psychiatric symptoms- you can’t really claim you’ve recruited anyone other than ‘people with psychiatric symptoms who also happen to have x,y,z ‘

which isn’t the same as saying you’ve studied ME/CFS

 

[bobbler]

One of the LC mods gave me a screenshot of what was posted, this is the actual picture:


Google translate:

Do you have residual complaints after a covid-19 infection?

The E-mind Integrative Neuropsychology Research Group of the ELTE PPK Institute of Psychology offers a free psychological development program for people between the ages of 18 and 85 who have been infected with covid-19!

We look forward to your application if you experience any of the following symptoms:

- Memory disorder, forgetfulness
- Attention problems
- Language difficulties
- Slowed thinking or movement
- Dejection, malaise
- Anxiety, depressing thoughts
- Fear of breathing

The content of the program:

- preliminary assessment
- 6-week weekly psychological development: individual virtual reality-based cognitive development or group art therapy
- follow-up examination at the end of the program and 3 months later

Application: posztcovidkutatás@gmail.com​

It is not mentioned at all in the picture that this is a study, you only notice it if you see the email address, which means "postcovidresearch@...

So it is not fully hidden information but otherwise this is presented as a free therapy program for long haulers and I believe they should absolutely include the information that this is only investigative and experimental. People may even misunderstand the email address and believe this to be some therapy proven or deemed promising for good reason by the researchers, if there is no further explanation.

Now she also added her own short comment to this photo, however I know this group well and that a comment (the length of about one sentence at least) is required otherwise the algorithm will not let the post out. So I don't know if that is the reason why it was added or not.

Dear Group Members! The Integrative Neuropsychology Research Group operating at ELTE offers a free art therapy or virtual reality-based cognitive development program to people struggling with post-covid complaints as part of a research. Our next art therapy group starts on May 8, the virtual reality-based development can be started at any time. You can apply or inquire at postzcovidkutatás@gmail.com.
​

This is better as here it is mentioned that it is part of a research, however, it is still presented as some opportunity to participate in some free therapy. But my main issue is that this is not included in the photo itself, which may (probably will) get shared without the comment in social media.

Absolutely agree. This is not upfront and given its psych stuff surely should particularly be a major ethics issue.