Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

Andy

Andy

Retired committee member
I've been sent this by the researcher himself. It looks 'reasonable' but obviously I'd encourage anybody considering taking part to read all the detail provided, including the files attached to this post.
The aim of this study is to determine how people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (referred to for the purposes of this study as ‘ME/CFS’) might use new sensor technologies to gather data that enables them to reflect on their condition. The study aims to understand how people make use of new sensors which enable them to log data about themselves to promote helpful self-reflection.

To do this, participants with ME/CFS are being asked to use a smartphone with an application that integrates data from a Fitbit Versa and a NeuroSky MindWave headset over a three week period. The application will present this data in the form of graphs and charts of daily recording sessions as well as notifying users about data which they might find interesting based on insights derived from statistical analysis of their data. The application also provides the ability to further search the data using queries.

It is expected that this will take place between August and October 2019. All of the study activities are being undertaken as part of a PhD in Computer Science at the University of Bath. Participation in the study requires that you are diagnosed with ME or CFS, be over the age of 18, be willing to take part in all the three parts of the study (a pre-study briefing, three week period using the mobile app, and a post-study interview), and have sufficient internet access / mobile data to allow synchronisation of data.

At the end of the three week period using the devices you will be asked for your feedback by way of recorded interview. The interview questions will aim to determine if the application was suitable for your intended use. The post-study interview can be carried out in-person, or remotely (e.g. Skype, Messenger, telephone) as required by you.

If you choose to take part in the study, you will be provided with the required hardware to participate. A pre-study briefing will take place to help you get to grips with the hardware and to explain how the application is intended to be used. During the three week period you will be asked to make daily recording sessions and try to explore and make sense of the recorded data. After the three-week period of using the hardware and software, a post-study interview will be conducted to understand your experiences with the application and gather feedback about the way in which you’ve used the devices.
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For further details and contact information see the attachments, Participant Information Sheet - Summary gives an overview, Participant Information Sheet gives more in depth detail.
 

Attachments

Jonathan Edwards said:
I don't understand what makes this academic research rather than market research for some electronic devices of no known medical validity. The brain wave device looks complete quackery.
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I think this is a group who are studying how people interact with technologies and the different interaction styles that work for people with different abilities. Its an important area of work in terms of getting new styles and designs of how people work with computer systems and how this can changes as new technologies happen. There is a degree of cognitive science here in terms of trying to match the interfaces to peoples mental processes and models (or that is how I understood it from someone who worked in the area).
 
Adrian said:
Its an important area of work in terms of getting new styles and designs of how people work with computer systems and how this can changes as new technologies happen.
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Well the chap in charge has on his personal page:

We aim to deliver next-generation project dashboards and data visualisations that can identify potential project issues, improve productivity, and improve the management of aspects such as intellectual property, risk and cost.

I can see a value in doing this for something of medical value but does it stretch to widgets that give nonsense outputs?

Won't recruiting people who want to play with widgets just indicate how much they like playing with widgets?
 
Jonathan Edwards said:
Well the chap in charge has on his personal page:

We aim to deliver next-generation project dashboards and data visualisations that can identify potential project issues, improve productivity, and improve the management of aspects such as intellectual property, risk and cost.

I can see a value in doing this for something of medical value but does it stretch to widgets that give nonsense outputs?

Won't recruiting people who want to play with widgets just indicate how much they like playing with widgets?
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In general terms data visualization is becoming a big reseach topic as we collect more and more data it is hard to present it in ways that are easy for people to understand and pick out useful information or judge trends. Often it is about presenting high dimentional data in ways that people can easily visualize.

The importance is not to have nonsense output but to look at what people are understanding from various views on data and how long it takes them to see and understand the important things.
 
Sarah94 said:
Don't trust anything Me/cfs-related coming out of Bath.
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It is a different department - this is from the computer science. Universities are not very joined up institutions so different research groups can have very different views and ideas (and even compete!). Look at Oxford where Sharpe is but also Karl Morton who is doing very good research.

I know nothing more about the research than what Andy has put here.

I would also point out that Crawley is Bristol University but works out of a Bath NHS hospital as a doctor.
 
Adrian said:
The importance is not to have nonsense output but to look at what people are understanding from various views on data and how long it takes them to see and understand the important things.
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But what is they see and think they understand what is important but in fact none of it is important!! Who decides whether they have understood what is important?
 
Jonathan Edwards said:
But what is they see and think they understand what is important but in fact none of it is important!! Who decides whether they have understood what is important?
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Off hand there are two things of importance. The first is where we have large datasets from which data scientists spend a lot of time pulling out information and trends can we make that quicker and easier and allow people without technical skills in data manipulation to see the information. The other way is to use visualisation techniques to pull out new information from data - in my world of computer security this can be important (and validated) in that analysts spend time looking at log files of what is happening and if they can find previously unknown attack patterns this becomes very important. And the attacks can often be validated once found by a more careful examination of the data. But here we are talking about situations where millions of events and terabytes of data are recorded.

But this is taking the thread off topic
 
The framing of how patients would use the data is bizarre. There is very limited usefulness. This kind of data is useful for research when gathered under a strict and reliable protocol. For patients, not so much. Odd.
 
Going to stick my head above the parapet here...
I've participated in this trial. I've been using my Fitbit to help me with trying to keep my activity below the threshold that triggers PEM for a couple of years and was interested in whether the addition of another sensor could help with identifying which activities are more effort than others (mentally). I didn't consider looking into the science of the sensor. There was nothing to lose as meetings were held via skype, so no travel, and wearing the headset and using the app could be built into what I do day to day anyway.
At the end I was asked questions that related to the usefulness of the data, combined in their app, for monitoring my symptoms and seeing if there were any correlations to activities and how I felt.
I had a couple of conversations with the researcher and I don't believe there is any other agenda than the interest in how the sensors could be used.
 
ringding said:
I had a couple of conversations with the researcher and I don't believe there is any other agenda than the interest in how the sensors could be used.
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Fair enough but the mention of 'industrial partners' makes it pretty clear that this is being financed by the manufacturers.

I have no doubt the researchers would like to think they are being helpful but then this is the problem with the therapists at Bath - and they like to think they are being helpful. If the 'brainwave sensor' is complete nonsense then I do worry.
 
Jonathan Edwards said:
If the 'brainwave sensor' is complete nonsense then I do worry.
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A lot of the questioning revolved around how much trust I had in the sensor readings and it's accuracy. To which the responses were 'low' and 'don't know'. Couldn't really comment on accuracy as unless working at the extremes (meditating versus concentrating hard on a conversation) then it was difficult to distinguish what the results were trying to say. It's possible that with better processing of the data, and correlating against the other metrics, some meaningful trends could be pulled out.
I hope that their intentions are genuine, even if motivated by a Commercial one. In my view anything that can help an individual understand their symptoms and how that maps on to PEM, crashes etc. would be useful in helping ensure that energy thresholds aren't exceeded.
 
From the participant information sheet linked in the opening post:
The brainwave data is converted into a variety of metrics or measures:

Alertness, Appreciation, Attention, Cognitive Preparedness, Creativity, Familiarity, Meditation, Mental Effort, and Mood.

These metrics are described as follows:

Alertness : Your level of alertness or vigilance. Higher values indicate a state of focus, lower values indicate a relaxing state of mind.

Appreciation : Your level of enjoyment or appreciation towards an external stimulus e.g. video, music, etc.

Attention: How focused you are at the moment, i.e. how much your attention is focused on a single thought or object.

Cognitive Preparedness : Your capacity for optimal cognitive performance on a relatively complex task i.e. your brain's capacity for
higher level cognitive functions.

Creativity : Your underlying level of creative cognition. High values indicate stronger brainwave activity promoting innovation and creative thinking.

Familiarity : Your learning progress while practicing a new skill. It gives an indication of the "learning curve" while acquiring a new skill.

Meditation : How calm or clear-minded you are at the moment.

Mental Effort : The mental workload experienced during a task. The harder your brain is working on a task, the higher the value.

Emotion : A combination of your emotional (pleasant, neutral or unpleasant) response and the intensity of that emotion toward an external stimulus.
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I am skeptical as to whether this 'Neurosky MindWave' and the apps are actually able to measure all those things.

Also, I find it strange to describe "how calm or clear-minded" someone is as 'Meditation'.

Further quotes from the information sheet:
This is not a medical study, none of the devices used are medically certified, and the study does not aim to offer a treatment or cure for ME/CFS.
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7. What are the possible disadvantages and risks of taking part?
[...] it may be that through the use of the devices, for example for pacing activities, that you interpret the data in such a way that suggests that you have more energy than you feel you do.
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This is followed by the advice:
You should not take any risks that you would not usually take in daily life and stick to your own feelings rather than doing what the device might suggest if you do not feel able. The main priority is your health, and should remain so during the study. You should not take any additional risks that you would consider being outside your normal day-to-day activities.
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Could be well intented, could also be mainly intented to get the ethic committee's approval.

I didn't find information about how the trial is funded.

Edited for clarity.
 
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ringding said:
I hope that their intentions are genuine, even if motivated by a Commercial one. In my view anything that can help an individual understand their symptoms and how that maps on to PEM, crashes etc. would be useful in helping ensure that energy thresholds aren't exceeded.
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My worry is that people like yourself might actually think that the mind wave measurer had some sort of scientific basis and could actually measure something. The sort of equipment I think being used cannot possibly indicate anything about brain function. It is a bit like using a volume readout on an audio amplifier to tell whether the person speaking is telling the truth, or reciting Shakespeare. It is complete nonsense - to the extent that I think it is misrepresentation. It will bear no relation to creativity, activity, meditation or anything.
 
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