The Scottish Government's Aliss project is aimed at providing websites with a reliable index of online material on health self-management
Long term conditions are a serious problem in Scotland, where about 2 million people, or two-fifths of the population, live with a chronic disease. The government has acknowledged that self-management can play a major role in dealing with conditions including epilepsy, asthma, diabetes, emphysema and chronic bronchitis, but it requires the right tools and information.
The internet is often the place where people start, but accurate and localised information can be difficult to find. Meanwhile, it is expensive to provide printed advice, which cannot be reused and goes out of date.
A 2007 report from Audit Scotland, Managing long-term conditions, stated there was "considerable progress to be made to provide cost-effective, community-based care" and suggested there was a demand for up-to-date and freely available information.
Aliss (access to local information to support self management) is an attempt to make Scots better managers of their own health by ensuring local information can be found easily online. It was created towards the end of 2008 in response to a policy pledge by the Scottish Government to develop directories of regionalised resources, and provides a specially built index for official health information.
"We thought about it and decided that what we don't want to do is produce a another website, because there is masses of information already out there," a Scottish Government spokeswoman says. "The real problem is that people can't find what is useful, but there isn't a lack of places for finding and placing their information about support."
"The lives of those living with long-term conditions can be significantly improved by greater self management - it puts them in the driving seat and allows them to make informed decisions about their care while retaining the support of health professionals," adds Michael Matheson, minister for public health.
"Projects such as Aliss can make a big difference to the lives of people living with long terms conditions ensuring they have vital information about local resources which can support them to lead healthier and more independent lives."
Aliss does not itself provide a website or a search facility for patients, but indexes and points towards information already published by public bodies, including libraries, GP practices and community centres. This is combined with knowledge from local people, submitted through their own personal accounts and tagged with the areas and conditions to which it applies.
The resulting interlinked data will then feed search engines on public sector and other sites signed up to use Aliss, using an API to offer a richer, deeper pool of localised health results to a national audience. The idea is that health information previously locked up in internal databases, printed as leaflets or on a wide range of little-used websites is much more visible and useful.
"What Aliss will hopefully do is provide a more relevant dataset for people who search and then present through their services," says Andy Hyde, a freelance consultant working on the project. "What we're hoping is that it can enhance and help other people to provide better information services through their own site, powering it away in the background, without knowing that Aliss is behind it." All information is moderated and can also be filtered so users can find relevant information from people they trust.
Development of Aliss has centred around users in local communities. During 2009 and 2010, the team worked in Edinburgh with secondary school Trinity Academy and the Clan Edinburgh literacy and numeracy project to raise awareness of how localised health information could help. Although participants' knowledge of the benefits of health self-management improved significantly, it again showed the problems of finding information.
Aliss, which is open source and therefore has no licence fees attached to it, has already been successfully tried in Renfrewshire's libraries and with Grampian Care Data, with data from the two organisations providing far more localised results.
Hyde has tested the system by tagging relevant content that he finds on the web and believes he can already see the benefits. "On a personal level, it's great when you find something on the web and you think that would be helpful, and you pop it in there and it becomes part of your collection. And it could be a picture, it could be a poem, it could be a place – it doesn't have to have a health label on it."
In the future, Aliss will be managed by Long Term Conditions Alliance Scotland, a charity funded by the Scottish Government and encompassing more than 200 bodies supporting people with long term conditions. They will all be encouraged to contribute information to the Aliss engine.
"Placing it with a particular health board or with a Scottish Government department wasn't part of the ethos of Aliss and the grass roots approach we've taken," says the Scottish Government spokesperson.
"We're reached a stage now where people are really interested and think this is something that could be very valuable, particularly in primary care, because they are at the hubs of all communities. If we can make it useful for them, it will work."
The system is now fully functional and being populated with content, which is likely to take six to 12 months. The team is also developing widgets and apps software designed to make it easier to contribute information. They believe that, if people contribute widely, the project has the potential to connect people with long term conditions to services that can help improve their lives.
This article is published by Guardian Professional. Join the Guardian Healthcare Network to receive regular emails on NHS innovation.
Read the complete post at http://www.guardian.co.uk/healthcare-network/2011/sep/27/scotland-web-resources-chronic-conditions-aliss
Sep 27 2011, 04:32 AM
Healthcare Network | guardian.co.uk