The document discusses the SHINE-y ALISS project which aims to improve access to information to support self-management of long-term conditions. It does this through a collaboration between various health organizations and by taking a distributed approach to curating information from a variety of sources and making it accessible via an online platform and intermediaries. The project uses both technology and social processes like co-design to achieve its goals.
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ALISS at the SHINE (Scottish Health Information NEtwork) Annual Study Day 31 March 2011
1. SHINE-y ALISS A ccess to L ocal I nformation to S upport S elf-Management Working towards better access to information to support self management of long term conditions. A collaboration of the Scottish Government, NHS Scotland, and the Long Term Conditions Alliance Scotland…and ever so many other organisations…and people…
50. Work with learning communities Lesson-planning Engage a Generation Project
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Notes de l'éditeur
Scotland’s population is constantly changing. This chart will be familiar to many of you. It visually demonstrates the way Scotland’s population structure has changed over the last 100 years and how it is projected to change – from the pyramid of 1911, to a supertanker by 2031. The important issue for us is the way the population is projected to change over the next 10 years and beyond. I will demonstrate here why this has particular resonance for all of us involved in the delivery of health and social care; and why we need to put this firmly on our agenda now and not simply hope that everything will just turn out right by chance.
This slide and the next are included to point up the impression that what ‘self management’ is rather depends on your institutional perspective (if you have such a thing in the first place). Here, it can be noted that from the clinicians point of view, the concept of SM seems to be firmly centred upon the patient visit to the clinician (activities are framed either before, during or after this event). Whereas the visit may not play that big a part in the patient’s year…
We know from public feedback that managing alone without proper information or support is a difficult struggle. This picture shows how little time is spent with health professionals. A person with, for instance diabetes, or asthma or epilepsy will see a health professional for about 15 – 20 minutes per month, and actually - this would be pretty generous in some surgeries. This adds up to just 3 hours per year of professional contact. And this is why it is so important to promote the ethos of self management.
This is a screen shot from a prototype that was built in the early stages of the project to demonstrate that by indexing the AGC URL and giving it some simple metadata which included a text summary describing the content, and latitude, longitude and used Yahooʼs Where On Earth Identifiers which allowed us to describe services that are area rather than point based.
Traditionally, public sector and voluntary organisations have collected information about groups and activities to create printed or online directories. Scotland has a good number of excellent aggregation services. All of these services are great but they are often not linked, silos of info that constantly re-invent the wheel and duplicate effort. These services have a number of common challenges: Keeping data current • It's a full time job to maintain accurate records • Services need to regularly contact organisations, log their activities, update the record and then supply the information in a meaningful way to people • This is a lot of work Reflecting smaller, less visible services • useful self management support may be provided on a small scale, for instance just one person who organises a walking group, a carer support network at a church hall. • This is difficult to discover and unlikely to have an extensive web presence, if at all. • These are less likely to be reflected in directory services and poorly indexed by the general search engines. • Learning from those living with the conditions • People living with conditions often have the best inside knowledge, know the best places to go, people to see and networks to tap into. • Information about self management support is richer and more useful when it allows contribution from, and curation by, service users. • Individuals need the means to contribute. Reusability of data • Directory services traditionally create silos of information that require us to visit them in order to access the data. this useful locked up information is hidden from the major search engines.
the location of the ACG classes in Carnoustie and Montrose were noted and returned in a search of the engine. Through the development of the Engine, we can provide advice and tools to improve what is available to search engines. Paradoxically, the ALISS project could improve the Google rankings of the sites weʼre aiming to index • This doesnʼt matter because our aim is to make self management resources more findable • In the example of the Angus Cardiac Group - they have one place to submit the information and those seeking that information have one place to find it. Info providers that currently have a directory of local services can make their data available to the Engine, making the info more widely available than if theyʼd just published it on their own web site.