What is an eMedicine portal?

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.  

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