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How would you feel about going on a database holding names of everyone with MS?

The question’s in the title really. If the NHS was to set up a database containing names and disease details for everyone diagnosed with MS, would you want to be on it? It would enable tracking of MS outcomes and treatments, it would make it easier for doctors to find patients who want to be part of trials. There would be a cost to the NHS in doing it and, it seems to me, no database is completely secure. Also the MS Society has got something like this underway (don’t know what’s happening about that).

Please let me know what you think - all replies appreciated.

Having just thought about this, and with all the scammers and dishonest people out there, I wouldn’t like to knowingly be on any database unless the producer of the database guaranteed it was 100% secure …with assurances that any breach would mean major financial compensation for those ON the database!!

Dom

I can’t see a problem to have my name and medical details on a database. If my contact details were linked to my GP and any contact was through him.

Can someone out there enlighten me as to why it wouldn’t be a good idea and why I shouldn’t do it.

Jan x

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I’m already on the NHS database which is supposed to link my health details to my GP, hospital and dentist according to what I originally agreed when they proposed the data sharing scheme. Surely they can just run a search function for certain conditions and get the data in that way? Why would they need a separate one for MS when we are all on their books anyway (or should be)?

As for security, there is no such thing as a foolproof system these days. Scammers are constantly working out new ways to hack into the systems. All we can do is be vigilant when a stranger contacts us and be sure that we are dealing with a legitimate person before giving any further information. We should all be vigilant with our bank accounts too, check regularly for fraudulent transactions and alert the bank promptly.

Tracey x

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Hmmmm, no I would definitely not agree to this!

Moira

hiya

i thought there was something already set up in scotland?

http://www.msr.scot.nhs.uk/

ellie

That’s a great idea…But ‘they’ only estimate our number as 90,000-100,000.There were 80,000 of us in 1958.There are 250,000 people with ME and some of the medics won’t even admit it exists.ME has no drug regimen so is very very cheap , hence there’s no reason not to release the numbers.MS isn’t at all cheap ,and a TRUE figure would show the under-spending for decades and the lack of progress by neurologists in 80 years.

When I win the lottery I’ll be getting a law firm to place a request under the Freedom of Information Act.In this day and age how can the number of diagnosed MS cases be an estimate. Every PCT must know how many diagnosed cases they’ve got.The MS society could place the request,but that would really upset all their friends.

Laters, Wb

I’m not sure why it would need names? If it would be used for research, including tracking treatments and outcomes, surely the patient’s name would irrelevant? A unique identification number, similar to those used for exams, should be sufficient. And of course they would need some basic information such as age and gender, as this might be significant in determining what works best for which groups - a 20 year old girl and a 60 year old man might not respond the same way.

I voluntarily joined the MS Society one, but withdrew after a time. Not over confidentiality issues, but because the research seemed to consist of repeatedly trying to gauge whether I’m depressed, and not to be interested in much else. I don’t believe I’m depressed, but it is a tad depressing if someone keeps asking! I am interested in research into the causes of MS, and factors that influence severity and progression - not repeated probing into my psychological state. If I ever thought they were going to do a mass analysis of lifestyle, medical history, and environmental factors in a quest to spot previously unknown patterns in the development of MS, I’d participate gladly, but if all they’re going to come up with is conclusions like: “The prevalence of depression is underestimated in MS” - sorry, I don’t really care! Maybe the not caring is a sign of a depressed person talking, but honestly, I only want to participate in research that strikes at the very core of MS: What causes it? Who is most at risk? Are there early predictors? That sort of thing. I’m really not interested in completing a self-assessment for depression every few months. I’m not saying depression is trivial, BUT I’d be far more willing to participate in research that probes underlying causes of MS, rather than focusing on one specific problem. I’ve already taken part in a genetic study (as have many here, I’m sure), and think that is of much higher scientific value than attempting to measure depression.

Tina

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Hi,

I don’t have a problem with it, I don’t think there would be anything on the database that isn’t already disclosed to the necessary organisations such as DVLA or insurance companies. If it helped to focus some attention to the condition it would be a good thing.

Jackie

I wouldn’t be bothered if my name was in a database. I’m sure there are far more than the “official” 100,000 people in the UK with MS. Maybe would increase funding to our support services (but I wouldn’t hold my breath). As has been noted above there is probably a way to do a database query (or queries on disparate systems) that will bring up the number of patients diagnosed with MS that are already in there.

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No problem - happy to oblige.

Good. Your number is 000001.

In this day and age, there is nothing Big Brother doesn’t already know. And this is especially true if you have ever contributed to an online resource such as this website!

The planet is flooded with data ‘crawlers’, out there finding any number of character strings within any form of media, from simple text like this very post, all the way up to rich media like audio and video. This, combined with CCTV facial recognition, global pin pointing of SIM cards in mobile devices and the recording of www access gained through your IP address (whether via proxy or not), mean that those who want to know, will know.

Of course, leaks and hacks occur and we all gnash our teeth over the Daily Mail headlines which report that the sky is falling… but what of the truly professional hackers… the ones who go undetected so that you might continue to contribute to their data banks of information?

I would have no problem with my identity being added to yet another database… especially one created to supposedly be of benefit.

Yes, no problem for me with that.

MS is so confusing, anything that helps to bring clarity would be good.

So another very old thread come back to life.

Now think about this:

If the Government (any Government) required every neurology department to produce a summary (list) of all those patients with MS,(age, gender, type of MS, treatment [if any], length of condition), we would know exactly how many MS victims there are in this country.

Since no Government has done this, we must assume that no Government wishes to know.
So now you know just how important your condition is to the powers that be,

Geoff

4 Likes

To be fair, it’s not just us they don’t care about…

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I have no problem with being on a database. I am registered with the MS Tissue bank so I can donate my brain and spine following my death, and have signed up to a few trials and surveys, one in which I gave a sample of my DNA, but did so only after very careful consideration of the possible drawbacks and consequences, and have refused to take part when I felt that any benefit gained was too little compared to the risks.

I would have to look at the details of such a database before deciding.

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Echoes my views. I have never heard of an MS tissue bank. As I can’t give blood while I’m alive, I find the idea that my leftover bits might do good after I’ve gone rather appealing… Must look into that!

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Here’s a link for anyone interested:

https://www.mssociety.org.uk/ms-research/get-involved-research/ms-tissue-bank

They are also interested in people who don’t have MS, so they can compare

Jo x

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It makes me very happy to see a thread I started a while ago come up again. With this one, I believe pwMS should take some responsibility to get the number of people with the condition in this country on the record.

To do this, go to the MS register - it’s at https://ukmsregister.org/Portal/Home - and register yourself. Get any friends you have with MS to do the same. Don’t complain that no one cares if you can’t be bothered to do this. Earlier in the thread, someone said that the MS register data is confidential and I assume that’s true.

I’ve been on the MS register for a while (two and a half years, judging from the age of this thread) and it is interesting to see how my physical condition has changed over that time. Not all for the worst, strangely enough.