What is an eMedicine Portal?
A MS eMedicine Portal an idea that has been evolving in my head for several years and comes from my interactions with MSers on this blog, in clinic, email and other forums. I am continuously been asked the same questions about MS and its management. The idea therefore is to start a website that allows you as an MSers to join; unlike patientslikeme this will be a private membership nobody needs to know who you are and why you are there and nobody will see your records unless you allow them access to it.
The eMedicine Portal will be designed to allow you to start a personal MS diary and track your disease with validated outcome measures. The website will also be populated with information to help you self-manage your disease and to give you advice about what to ask your MSologist or MS nurse. The site will also allow you to invite your MSologist or nurse, or anybody else you choose, to particular sections to answer any queries you have that the site is unable to answer via the self-help content. If this advice is generic and applicable to others you can let us, the sites developers know, so that we can include it as part of the site for other MSers in the future. I envisage the site evolving to allow you to upload MRI and other clinical documents as a file repository so that you can keep all your MS-related information in one place. From a research perspective the site will allow us to track your disease using validated outcome measures, in other words we will ask you to fill in questionnaires on an annual basis for this purpose. This component will be voluntary and you could opt out of it if you want.
I would like to know what you think of the MS eMedicine Portal idea? If you like the idea would you use it or at least try it? Please use the current survey to answer this question.
Our problem is that I have already spoken to some developers regarding the costs of starting and maintaining the site and they are not trivial. We are going to need £250,000 up front and ~£50,000-£75,000 per annum to maintain the site. Why are the costs so high? Firstly, we will need a full-time coordinator/administrator to run the site; these projects done run on their own and I don’t have the time to do it myself. We will need a full-time programmer, or team a team of programmers, to set-up and test the site and then their part-time involvement to maintain and improve the site going forward. There are also costs of hosting the site, etc.
So if you know of any IT philanthropists who would want to help please let me know. Another option is to ask one of the technology companies to do this; unfortunately, I don’t know anyone in this field and I am not sure if MS is on their radar.
A MS eMedicine Portal an idea that has been evolving in my head for several years and comes from my interactions with MSers on this blog, in clinic, email and other forums. I am continuously been asked the same questions about MS and its management. The idea therefore is to start a website that allows you as an MSers to join; unlike patientslikeme this will be a private membership nobody needs to know who you are and why you are there and nobody will see your records unless you allow them access to it.
The eMedicine Portal will be designed to allow you to start a personal MS diary and track your disease with validated outcome measures. The website will also be populated with information to help you self-manage your disease and to give you advice about what to ask your MSologist or MS nurse. The site will also allow you to invite your MSologist or nurse, or anybody else you choose, to particular sections to answer any queries you have that the site is unable to answer via the self-help content. If this advice is generic and applicable to others you can let us, the sites developers know, so that we can include it as part of the site for other MSers in the future. I envisage the site evolving to allow you to upload MRI and other clinical documents as a file repository so that you can keep all your MS-related information in one place. From a research perspective the site will allow us to track your disease using validated outcome measures, in other words we will ask you to fill in questionnaires on an annual basis for this purpose. This component will be voluntary and you could opt out of it if you want.
I would like to know what you think of the MS eMedicine Portal idea? If you like the idea would you use it or at least try it? Please use the current survey to answer this question.
Our problem is that I have already spoken to some developers regarding the costs of starting and maintaining the site and they are not trivial. We are going to need £250,000 up front and ~£50,000-£75,000 per annum to maintain the site. Why are the costs so high? Firstly, we will need a full-time coordinator/administrator to run the site; these projects done run on their own and I don’t have the time to do it myself. We will need a full-time programmer, or team a team of programmers, to set-up and test the site and then their part-time involvement to maintain and improve the site going forward. There are also costs of hosting the site, etc.
So if you know of any IT philanthropists who would want to help please let me know. Another option is to ask one of the technology companies to do this; unfortunately, I don’t know anyone in this field and I am not sure if MS is on their radar.
This is a great idea and I would definitely use the site! How long will it take for you to set-up the portal?Why don't you set-up an account so that we can donate money towards its development costs?
I don't know – the costs are very high, could be used better elsewhere (trials, lab tests). I think a similar app is in use in Germany, would be interesting to first find out about adherence after 1 year or so before start-up. In the end it's not technology MSers need but more effective treatment.
If the portal worked well, with good adherence, we could use the portal to recruit for clinical trials and even use the outcomes on the portal to test new drugs. This would reduce the costs of doing trials substantially. Do yo know who is doing this in Germany? The costs of the portal are small in relation to what it costs to develop a drug; $850M per licensed DMT. A single phase 3 clinical trial costs upwards of $50M; I suspect the costs are closer to £100M. A typical research project grant that we apply for that includes EAE work over a period of 3 years costs more than £250K. Unfortunately, research is not cheap and in particular drug development. For example, a grant that David Selwood, MouseDoctor and I have from the Wellcome Trust to take a new symptomatic therapy for MSers through animal toxicology testing is £1.7M. To do the phase 1, or first in man, studies will cost another £1M; this is before we even get the drug into MSers to see if it works. These figure also excludes all the early development work on discovering, developing and testing the drug in our animal model.
Did you know the MS Society Register for MSers cost approximately £500,000 to develop and run?
Re: Do yo know who is doing this in Germany? It's called "MS Diary" an app but I can't access it because I don't use iPhones. It looks like monitoring your MS (mood, progression etc.)It's done by the German MS Society (DGMS) and another society (which has links with Novartis as far as I know called 'AMSEL'). If you go to one of the above mentioned pages you can see it on the main page. Maybe one of your German speaking researchers can access it and look around.
I know about this app. Our portal will provide more than this; it will be used as a learning tool to teach MSers about MS, a self-management tool, a self-monitoring tool, a diary, a data repository, an environment for e-appointments with your MS team, a tool for clinical trials and possibly for pharmacovigilance (track self-reporting of side-effects from medications). This may explain why the development costs seem high!
Would this only be relevant for people living in GB?
No this will be international. The worldwide web has no boundaries. The only hurdle is that the first version will be in English; if successful we would obviously get the resource in place to make it multilingual, with Spanish, French, German, Italian, etc. following.
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Few questions comes to mind: how will the website recoup its initial investment?Is it a proper enterprise or a philanthropic experiment?(I am further interested in the former and may invest seed capital as well)Last, you are using this blogspot for free! and it is working quite well.Have you looked into available solutions like this one:http://www.microsoft.com/en-gb/healthvault/default.aspx
Microsoft HealthVault is a good idea. You will still need the fulltime co-ordinator and IT people but they won't have to build and test the application from ground up. What healthvault is: http://msdn.microsoft.com/en-gb/healthvault/jj128027It has been used to build the type of portal you want. This link has some case studies. http://msdn.microsoft.com/en-gb/healthvault/hh923023
Not sure about recouping profits; although I have been contacted by a health technology company who may want to run this as part of their own portfolio of projects. I am not in this for money, but it would be great if it was self-funding!
This is all we need, another means of quantifying and measuring, rather than fixing the damage done by MS. Reading flimsy concepts like thing sober me to the reality of just how many lifetimes we are away from being able to remedy MS, especially in its progressive forms.If really you want to peruse such avenues, why ask for public money when the greedy pharmaceutical companies you’re friends are loaded with cash surpluses? It’s unfair that our charitable donations to MS organisations are woefully under delivering in terms qualitative therapies.
Why not optimize what's already there and working well i.e. THIS BLOG? I am sure that if this blog would be better known in Europe (by asking the individual MS societies for allowing to put the link on their blogs) you would get a very good result. You need an IT person for creating a space where the FAQ should be added so that you don't need to reply to the same question. Make adjustments (which are cheaper) to this blog – it's really good.
I love this idea. I think it is an excellent concept. Not only would I use it, but I would happily pay to do so…………