Big Data idea

Everyday living
1

Hi All,

So Ive had a thought and was looking for some feedback as to whether people on this board think its useful / viable and as to whether they would participate.

It occurred to me that we all have our own strategies for dealing with MS and the symptoms. Many of us have done our own research, and take a mix of meds / supplements, and have our own mechanisms for dealing with stress.

But …

Its a black art!

So I was thinking about starting an online database which essentially kep a daily diary of:

Peoples diets

Supplementary vitamin intake

Meds

Levels of stress

Levels of fatigue

Symtom levels

Rate of relapse

This could, if uptake was high, and data quality was good, build a very large online resource of MS sufferers habits and be used to spot patterns in behaviour that cause relapse or alleviate symptoms.

Then, for once, we could all use this to best manage the condition to the best effect.

So what I’d like to know is, if this facility was available:

Would you use it?

What do you think would be important to capture?

What issues do you see and how should i overcome them?

What would cause you to recommend this to others?

I see this being quite a big job so would probably have to use advertising to generate cash but this would be a free service to users.

Thoughts please :smiley:

2

I’d thought something along these lines was what the MS Register was going to be all about. http://www.ukmsregister.org/Portal/Home

However, I found it extremely disappointing, because, as the splash page now makes clear, the surveys seem only to be oriented towards how our MS affects us - not looking into trends or patterns such as whether there are common lifestyle factors in people who develop MS, or things (other than the orthodox DMDs) that influence relapse rates etc.

Unless it is planned to be expanded (I thought at one stage it was, to include hospital participation - with patient consent) - I think it’s a really wasted opportunity. I cancelled my account after a bit, because I was fed up with being repeatedly asked if I’m depressed - which I don’t think is cutting edge MS research. If I’d truly understood that the remit was only: “To increase our understanding of living with it”, I’d probably never have signed up in the first place.

So, if I was going to contribute to any similar data collection it would have to be good (much better than just asking how I feel all the time), it would have to be scientific, and it would have to be very, very large - enough to produce statistically meaningful results. For the last reason alone, I probably wouldn’t use or recommend a website set up by a private individual (sorry!)

To work properly, it really needs the hospitals involved. Not to force patient participation, but certainly to reach the widest possible audience. Almost everyone with MS will be on the books of some hospital, somewhere, so they really need to be in on the act, to ensure recruiting the large numbers necessary to make it viable.

Tina

3

Thanks Tina,

Good points,

What I want to do is build something on behalf the MS community, not on behalf of a corporation / public body that may have an agenda.

However, I think I could get buy in from bodies like the MS Society to get the exposure, any thoughts of other routes? Maybe companies like Holland & Barrett who could see results confirming that supplements do indeed help.

And yes - I want to avoid the feel of a private website as this would not get wide by in.

I agree, my thoughts are to get enough data to make it meaningful else it would be a pointless exercise.

D

4

Hmmm.

I think sponsorship from supplement manufacturers is a big no-no, as that could never count as “independent” research, and might be seen as promoting a commercial product - obviously, if they were to stump up money towards it (and it’s a big IF), they’d expect the payback to be that participants would buy their products, or at least that they’d be permitted to advertise on the site.

Also, there is already bias in your project, if you’re expecting it to confirm that supplements help. With the exception of Vitamin D, I don’t believe there’s any evidence they do - and in most cases they are a complete waste of money.

Obviously, part of the purpose of the database would be to support or refute that, but for it to be accepted as valid science, you’d have to go into it with an open mind, and not with a project sponsor who expects a result showing their products are brilliant. If you do the latter, you’ve immediately thrown away all pretence at neutrality, and the results (IF they come out in favour of supplements) simply won’t be believed. Everyone will say: “What a surprise: this was paid for by Holland and Barrett!”

Furthermore, I’m quite sure the MS Society won’t touch it, if it’s clear you’re in partnership with a supplement manufacturer. They can’t appear to endorse a particular, brand, or even a generic supplement, if there’s no evidence it’s effective. So you’d have to choose who to cast your lot in with from the start, as you won’t get both! So do you go with a commercial enterprise (who have plenty of money, but totally undermine the impartiality of your study), or do you try to enlist the Society? They would need a good business case, and proof you have a good understanding of the scientific method (from your talk of involving Holland and Barrett, and already anticipating the results before you’ve started, it’s fairly clear you haven’t), and the necessary expertise - e.g. in IT, statistics etc. to pull off something on this scale.

Do you have all that? I don’t know anything about your background - possibly you do have experience of large IT projects, but do you know anything at all about health-related research? Or do you have access to consultants who do?

Tina