In April, we listed quite a number of online support groups for people coping with a wide range of illnesses, though Rareshare is the only one that we are aware of that purely focuses on rare diseases.

Connecting

The main place for the interaction between users is in the discussion forums that are the central focus of every community. Rareshare smartly kept these forums very basic and focused on usability over features.

Besides joining communities and getting involved in the discussion forums, there does not seem to be a way for users to send messages directly to each other on the site yet.

User profiles are very much what one would expect from a social network, with the added bonus of being able to import an RSS feed for a users' blog. This would be especially interesting for somebody who is already blogging about a certain disease. One area where Rareshare might be able to add features would be to give users the option to start their own blog on the site.

Sharing Information

While Rareshare's basic idea is to form support groups around these diseases, it also collects some of the more basic information about the diseases such as symptoms, proven and experimental treatments, long term prognoses, etc.

For most diseases, a lot of this information is still missing and even when it exists, it is often rather basic. Users who are subscribed to a group can start adding this information using a very simple text editor. Thanks to its simplicity, adding information and making changes to the site should be very easy, even for those who are not very tech-savvy. At the same time, though, these are not wikis, so there is no way to easily revert back to earlier edits or see who made specific changes.

It would be nice if Rareshare pre-populated some of the information with links to information on other sites like the Rare Diseases Clinical Research Network or even just Wikipedia.

Verdict

Rareshare is, of course, one of those sites where one wishes it didn't have to exist. However, it definitely looks like it could become a great resource for those who have to cope with a rare disease and don't have a local support network, or those who are looking to expand their local network into a world-wide support network. While there are already a number of online support groups in existence for specific diseases, Rareshare looks like it's the only one that is trying to build a more comprehensive network of communities under one roof.

"I was particulary impressed with the Vitals layout. I have seen many of these ratings site but none are as comprehensive as the data shown on Vitals. Also, this is the only ratings site that allows physicians full control to update their data and respond to comments."

"Medicine 2.0 ?

The current state of the art in medicine 2.0 of today is the automated online CDSS (Clinical Decision Support Systems ). A doctor in a physician in rural clinic could upload medical data , such as lab tests, patients personal infos (age, ethnicity, alcohol consumption, smoker, etc,...) and so forth. These medical data are queried the CDSS from a central server somewhere to give diagnosis (specific cases only and not general) of the situation based on the patient's data which has just been sent thru.

Another type of unstructured medical data is if a suburban clinic with a facility for MRI medical imaging, EEG & ECG readers, etc,... could just take scan the patient and upload those images or EEG/ECG to query the CDSS to give a diagnosis of the current image/EEG/ECG that has just been sent thru based on similar images/EEG/ECG signals that have been stored & index by the CDSS.

CDSS is not new, it has been adopted in clinics and major hospitals over the last 30 years or so, but this time, it is moving into the internet, ie, automated diagnosis anywhere at anytime. CDSS is frequently covered in certain issues of the Journal of Artificial Intelligence in Medicine.

I am currently developing a small CDSS for automated EEG/ECG diagnosis, using DSP (digital signal processing) & machine learning algorithms (this is my hobby). This app is to be deployed at Auckland Hospital's Liver Clinic Unit, for internal use only and not web-enabled. If the staffs at the clinic find it useful, then perhaps I will look to further develop it for commercial use, where I will include MRI image diagnosis (image retrieval classification) system and other specific diseases. There are tons of publications in these areas.

I agree that medicine-2.0 is on the horizon where it will be widely adopted."

I was particularly interested in the story of Dr Jay Parkinson, a Web-savvy doctor. He has an impressive website, where he describes himself as "a new kind of physician".

"People don’t understand that I use the internet to communicate, not diagnose. I communicate with my patients via the internet and see them in their apartments."

That suggests that we're still at the early age of Web-enabled healthcare, if it's still focused on enhancing communication and not delivering healthcare via the Internet. Still, it's encouraging -- check out Bertalan's presentation below to see how the Web is currently being used in the world of medicine. The activity in Second Life is quite advanced, including "virtual experiments"(!)

See also the Medicine 2.0 blog carnival of web 2.0 and medicine, which has loads of links to check out.

Medicine is a space with a whole lot of data and a whole lot of money and while I won't claim enough domain expertise to judge the merits of this company relative to other ventures in medical information - I do think they are doing some things that anyone in tech could find interesting.

Though the use of structured data is unsurprising in medicine, one thing we've always questioned here is whether it's viable to expect users to create the structure for their data. On one hand semantic-savy applications sometimes require too much extra effort by users in order to assign semantic metadata. On the other hand, complex data sets (in medicine, for example) can require that long and inflexible forms be filled out in order to create structure.

Acesis takes a different approach. Their desktop AIR app lets users (clinicians) fill out forms created in response to patient web input, create forms on the fly and extend upon forms with input turned to XML on the fly. They say it's a smart (responsive) document authoring system and that seems an apt description.

The forms present users with one question at a time and branch out subsequent options based on their replies. CEO Kevin Chesney told me that the company integrates five different licensed vocabularies from different fields and ties them together using XML. Users can rearrange or pull in fields at any point in the process. Individual fields can be given different security and permissions and the user experience on a tablet PC looked good.

A similarly sophisticated, yet usable approach is fun for me to imagine in the consumer world. It's the kind of paradigm that I could imagine serving professionals well in a wide variety of industries.

Using AIR for Serious Apps

I was particularly intrigued by the company's use of Adobe's Flex and AIR platforms. Chesney's previous work brought these same technologies into the Real Estate market - so don't assume that colorful microblogging desktop apps are the only AIR apps coming to market.

Chesney told me that after years of pushing AJAX to its limits, the rich libraries available for Flex let them take the interface to a whole different level. It also allowed one code base to be used on the desktop by physicians, a substantial number of whom I was surprised to hear are Mac users, and across any browser with no AIR download thanks to the browser compatibility work that Adobe has already done.

I think there are some interesting things going on at Acesis that people in a wide variety of markets could appreciate thinking about.