Collecting data from users

[daisybell]

It seems the app is now available.
This thread has more info
Smartphone app and specialised clinic for chronic fatigue patients
Discussion in 'General ME/CFS News' started by melihtas, Today at 1:15 AM.

 

[optimist]

Not time to read all messages in full yet, but generally a good idea. It is likely to suffer logistical problems, notably the phenomenon of providing more questions than answers, as is often found in surveys (e.g. the first one on Hip's list). What name/s do we use for supplements, what do we do in the case of overlaps (e.g. whole extracts vs. individual ingredients), what do we do about timescales of outcomes (look at short- and long-term outcomes? defined how?), allowing for editing/correction (like a Wiki?), how do we define outcomes (symptoms, blood results...), what about diagnostic criteria, etc. Not saying that the obstacles are insurmountable by any means, but it is likely to require a huge amount of work and discussion, unless this has already been done and some of the existing databases are good. Not time to look at them at present.

Sorry if I have repeated anything others have already said!

• What name/s do we use for supplements: I suppose as general names as possible. I am now taking Vitamin-D3 drops that comes from the fat in the wool of some animal. I suppose in that case we could list "Vitamin-D3 drops (organic)". The user will then have the ability to register amount and frequency.
• What do we do in the case of overlaps (e.g. whole extracts vs. individual ingredients): I think it would be best if the user could extract the amounts and register them individually...
• What do we do about timescales of outcomes (look at short- and long-term outcomes? defined how?): I believe regular reporting would be very beneficial vs. one time feedback. How? dunno yet
• Allowing for editing/correction (like a Wiki?): I suppose you mean the supplements list, descriptions, treatments and the like? That could be both a good and a bad thing. If everyone are allowed to edit, I am afraid the quality of that data could easily become a mix of good and poor. It would perhaps be the best if people proved themselves first to be knowledgeable enough before being allowed to edit the database. Perhaps the changes/additions should be reviewed by another user too, before it is included?
• How do we define outcomes (symptoms, blood results...): I didn't get that question?
• What about diagnostic criteria: This I touched briefly in a previous post. I believe each profile should be required to registerd if they are self diagnosed, or by professionals, and what diagnose (criteria) if so

I am not sure if there exists any open/free databases about supplements and such? I know there are a few for food and nutrition.

 

[Leopardtail]

@MeSci @optimist

• What name/s do we use for supplements: I suppose as general names as possible. I am now taking Vitamin-D3 drops that comes from the fat in the wool of some animal. I suppose in that case we could list "Vitamin-D3 drops (organic)". The user will then have the ability to register amount and frequency.

Agreed
We must use the generic name whenever possible, but might need also to include brand, that would cover a few issues. We could then use drill down -> effectiveness of supplement -> effectiveness of brand

• What do we do in the case of overlaps (e.g. whole extracts vs. individual ingredients): I think it would be best if the user could extract the amounts and register them individually...

Not sure on this one, could get terribly complicated and many supplements don't declare things with exactitude.
This seems more viable for 'pharmaceuticals.
There would be a similar issue for 'compound supplements' e.g. XYZ energy mix. b-complex, multi-vitamins.

• What do we do about timescales of outcomes (look at short- and long-term outcomes? defined how?): I believe regular reporting would be very beneficial vs. one time feedback. How? dunno yet

I am inclined to reporting every six (variable fatigue) or twelve months to pick up concrete measurable improvement, or beginning and end of therapy.

• Allowing for editing/correction (like a Wiki?): I suppose you mean the supplements list, descriptions, treatments and the like? That could be both a good and a bad thing. If everyone are allowed to edit, I am afraid the quality of that data could easily become a mix of good and poor. It would perhaps be the best if people proved themselves first to be knowledgeable enough before being allowed to edit the database. Perhaps the changes/additions should be reviewed by another user too, before it is included?

Much depends here on what we are talking about.
Supplement details need to be stable & reliable and not duplicated because they are shared - there may be a need for 'approval'. Personal symptoms should be editable, but nor from six years ago (too much chance of bad data.

For some things such as metabolites in test panels, some form of admin function is likely needed.

• How do we define outcomes (symptoms, blood results...): I didn't get that question?
• What about diagnostic criteria: This I touched briefly in a previous post. I believe each profile should be required to registerd if they are self diagnosed, or by professionals, and what diagnose (criteria) if so

I am thinking on this one, it would be complex, but we might be able to calculate which criteria a member meets from the symptoms. That is unlikely to be a phase one function though.

Regarding outcomes, if the users queries supplements for symptoms, use symptom as metric.
If user queries treatment for metabolite (eg. low T3) then use lab results.

not a considered response just my instinctive one.

I am not sure if there exists any open/free databases about supplements and such? I know there are a few for food and nutrition.

Come back to us on that please, not something I had considered.

 

[optimist]

http://catalog.data.gov/dataset/usda-national-nutrient-database-for-standard-reference

USDA National Nutrient Database for Standard reference
The USDA National Nutrient Database for Standard Reference, Release 25 (SR25) is the major source of food composition data in the United States and provides the foundation for most public and private sector databases. SR25 contains nutrient data for over 8,100 food items and up to 146 food components, such as vitamins, minerals, amino acids, and fatty acids. It replaces the previous release, SR24 issued in September 2011.

 

[Leopardtail]

Just something to throw into the pot here. All of this hinges on being systematic, accurate and consistent about recording symptoms. All else flows from them.
We need to consider how to record them, if good quality existing standards are available etc.
Eg. athens sleep scale, but for bowels, immune system etc etc...

 

[optimist]

I hope we could find similar databases as the one above for other things like suplements and medicine

 

[Leopardtail]

@Ema
I was hoping you might weigh in on any academic methods for precisely describing severity/pattern of the various ME symptoms here.

 

[Leopardtail]

@Hip @Radio
I would love your inputs on this thread, particularly the point I addressed to Ema

 

[optimist]

I guess it could also be possible to write to different organizations that already has such data if we could connect to their API or just get a copy of the data...

 

[optimist]

What about structuring our ideas in a mind-map? Get's kind of difficult to keep track when posts get so plentiful...

Found this one, looks good. It's free (Open Source) and it has collaboration abilities.
http://www.wisemapping.com

 

[Hip]

@Hip @Radio
I would love your inputs on this thread, particularly the point I addressed to Ema

One issue is that it can be difficult to gauge changes in the severity of your condition from week to week, or month to month, mainly because of the brain fog and memory problems — ME/CFS patients often cannot remember what they had for lunch yesterday, let alone how they felt last month. So measurement of symptomatic improvement is not that easy.

I discuss this issue in the first post of this thread: How to best gauge levels of brain fog & fatigue

 

[MeSci]

• How do we define outcomes (symptoms, blood results...): I didn't get that question?

Can't spend much time here and brain not properly awake, but some examples:

• What scales should be used for the different symptoms? Do we use a known scale and give 'before' and 'after' results?
• When talking about sleep, there are numerous aspects to sleep - quality; quantity; speed of getting (back) to sleep; depth of sleep; whether refreshing or not; if broken, by what (e.g. need to urinate, restless legs, pain?) Or would there be a simple 'better', 'worse', 'no change' scale?

I am not sure if there exists any open/free databases about supplements and such? I know there are a few for food and nutrition.

There is this ongoing survey linked earlier by @Hip (created by @tandrsc I think)

Since it was started, despite it being well-thought-out and created, some of the problems referred to here started arising, for example supplements containing multiple ingredients. And this is just a simple survey!

Another issue - not sure if it has been mentioned - is dosages. Supplements come in different dosages, and are taken at varying frequencies.

If this is going to be really good it is going to take a lot of work. If people are prepared to do this for free, it would be great.

 

[Ema]

@Ema
I was hoping you might weigh in on any academic methods for precisely describing severity/pattern of the various ME symptoms here.

I'm very flattered that you thought of me but I am afraid I am not going to be any help. Nothing comes to mind immediately unfortunately. So sorry!

 

[Leopardtail]

Can't spend much time here and brain not properly awake, but some examples:

• What scales should be used for the different symptoms? Do we use a known scale and give 'before' and 'after' results?
• When talking about sleep, there are numerous aspects to sleep - quality; quantity; speed of getting (back) to sleep; depth of sleep; whether refreshing or not; if broken, by what (e.g. need to urinate, restless legs, pain?) Or would there be a simple 'better', 'worse', 'no change' scale?

There is this ongoing survey linked earlier by @Hip (created by @tandrsc I think)

Since it was started, despite it being well-thought-out and created, some of the problems referred to here started arising, for example supplements containing multiple ingredients. And this is just a simple survey!

Another issue - not sure if it has been mentioned - is dosages. Supplements come in different dosages, and are taken at varying frequencies.

If this is going to be really good it is going to take a lot of work. If people are prepared to do this for free, it would be great.

With respect to the symptoms in general, we would probably have to roll one symptom cluster at once for two reasons:

1. users need not to be overwhelmed by filling in too much info at once
2. we will need to define a clear scale for responses to each question that's numeric (a distinct bell type scale for each) - we might be able to recruit ME support groups to assist with that. Most obviously we need a clearly defined 'top' from very severe suffers of a symptom a 'bottom' that compares our minimum with the general population.

Phoenix probably has members semi-expert in most things to make this happen by divide and conquer.

@Dr.Patient do you have any ideas re existing academic formal scales for the purpose of tracking symptom severity across the range of symptoms?

 

[Leopardtail]

I guess it could also be possible to write to different organizations that already has such data if we could connect to their API or just get a copy of the data...

Which data are you referring to here?

 

[Leopardtail]

One issue is that it can be difficult to gauge changes in the severity of your condition from week to week, or month to month, mainly because of the brain fog and memory problems — ME/CFS patients often cannot remember what they had for lunch yesterday, let alone how they felt last month. So measurement of symptomatic improvement is not that easy.

I discuss this issue in the first post of this thread: How to best gauge levels of brain fog & fatigue

Agreed any measures need to be simple, concrete, and based upon what's 'normal'... we would be looking for symptomatic equivalents of 'the bell scale' here.

 

[Leopardtail]

What about structuring our ideas in a mind-map? Get's kind of difficult to keep track when posts get so plentiful...

Found this one, looks good. It's free (Open Source) and it has collaboration abilities.
http://www.wisemapping.com

If we can present the mind-map here in the thread, I would be more than happy to try it. I am also in the process of putting together a 'requirements document' that pulls the points together from this thread and the smart-phone one.

 

[optimist]

Which data are you referring to here?

It was a continuation of the post I made before this one. I posted the link to a free database for nutrition values in food. Hopefully we could find similar databases for supplements and medication.

 

[optimist]

If we can present the mind-map here in the thread, I would be more than happy to try it. I am also in the process of putting together a 'requirements document' that pulls the points together from this thread and the smart-phone one.

I have not tried it too much, but I believe it is possible to share a link with only viewing permissions here on the forum.

 

[optimist]

I checked - it is very possible!