We know we have a problem with Long Term Conditions- there are around 2 million people with one or more LTCs in Scotland, around 40% of the population.
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.
The project has taken a novel approach- it could have encouraged people to do their own thing locally, ...
... or gone for one national database.
We might call ALISS a national local directory, because it lets people collect and manage their own local information resources, but as part of a national collection. And sometimes we just call it a 'big index' because, technically, that's what it boils down to. But I'm going to call ALISS a 'curation engine', and explain what I mean by that.
ALISS supports a similar process. The ALISS engine collects short descriptions and links to useful resources, either by people submitting things, or by getting them electronically from other systems in various ways. Once a resource is in the ALISS index, people with accounts can add keywords or more information, like sticking a post-it note on. We call that curation, meaning collecting information and labelling it in ways that make it more useful and easier to find. This means devolving control over content, which is not only in line with the ethic of self management but also more sustainable as it means no resources going to centralised administration. But, it’s not a free-for-all. All content is moderated, and you can filter it so you only get information from sources you trust. ALISS data can be published and searched by any other computer systems- the data is open and accessible across the web.
This means useful resources which might be scattered across lots of different systems, or not online at all, can now be indexed in one place which we call the ALISS Engine. The Engine can then be accessed by any system across the web. So it can feed other web sites, practice systems, libraries, advice centres, right across Scotland.
ALISS aims to make useful information easier and quicker to find- but what kind of information are we talking about?Questions like ‘what is diabetes’ or ‘what are the treatments for diabetes’ need quality assured information, provided by NHS Inform and other reputable sources.But other questions, like ‘what do I do now’, ‘who can I talk to’, ‘what will it be like’, or ‘how will I cope’ are local and personal.
We know people access all this information ...
... from a huge range of sources.
ALISS focusses on this middle section, helping people identify what is useful.
to fix this sort of problem, typically someone has to go back to the original resource, and add in all the possible tags they can think of. ALISS uses a different approach.
This strange looking beast was once a lion, gifted to the King of Sweden in 1731, and when it died, the skin and bones were given to a local taxidermist. But like most people in 18th century Sweden, he’d never seen a lion. So he did his best, and this is the result. And that’s our problem here, that we’re presenting something which is innovative and not been done before. Our vision is that it will lead to huge improvement in participation, and promoting localism, using emerging technologies to tackle our changing demography. We’re describing the ALISS Engine, but we don’t know what it looks like – it will link data but you won’t see it.
Making Self-Management Support more findable
Topic MenuSome things about ALISS: • Where did the idea come from? (a.k.a. policy context) • What’s the general approach? • Some key technical concepts • Technical ‘architecture’ • Quality-assured information • Accessing ALISS data across the web • What’s it like in practice? • Workshops and asset-mapping • GPs and local community resources The Local Context: • What do you want to do? • When do you want to do it/them?
2 millionin Scotland living with a long term health condition40%of Scotland’s population
15 min per month = 3 hours per year Copyright 2004 FreePhotosBank.com
ALISSresources for self-management of long term conditionsS c o tG o v ‘B e tte r H e alth , B e tte r C are ’: i d e n ti fy & m ap e x i s ti n g lo c al • s u p p o rt s ys te m s fo r s taff & p u b li c •I m p ro vi n g q u ali ty C re ati ve , i n n o vati ve , c o n n e c ti n g • 5
what’s the problem? • Massive amount of information – all disconnected • hard to find – no matter how useful • hard to collate and publish • public and staff not able to easily share their useful information • Useful support is local, hard to capture, often informal, no web presence
What to do? - ALISS Visiondesigning the engine• improve existing processes• designed by people who are going to use it• local control• sustainable• distributed control, not centrally managed• easy to use, think of health literacy
what kind of information?• what is diabetes? quality assured• what are the treatments?• what do I do now?• who can I talk to? local & personal• what will it be like?• will I cope? 19
the range of health information Centrespam experience resources quality assured
the range of providers Centrespam experience resources quality assured
ALISS focus is self management Centre ALISSspam experience resources quality assured
ALISS and quality-assured infoa local walking groupPartick Walking Group IndexWhether you are an experienced walker or haven’twalked in a while, our walks are a great way to keep fit,get to know your local area and meet new people.All walks are free - and there is no need to book - justturn up!However, if you are attending for the first time, t title: Partick Walking Groupplease arrive 10 or 15 minutes before the walk is due tobegin to fill in a registration form with the walk leader. text: Whether you are anDon’t worry, this only needs to be done once.Each walk lasts an hour and begins and ends at the experienced walker or...locations listed below.Partick Annexe Healthy Living CentreWalks leave from locations: G11 5PE9A Stewartville StreetMondays, 11am-12pm (gentlehealth walk). Walk leader: JaneThursdays, 2-3pm. Walk tags: walking, exerciseleaders: Jane and Angielocations: G11 5PEtags: walking, exercise 23
Search second-guessing user interests in the Partick Walking Group “I w an t e x e rc i s e ”P arti c k + e x e rc i s e ✔ “I ’m g e tti n g o ve r a h e art p ro b le m ” h e art p ro b le m ✘ “I w an t to g e t o u t w i th m y p artn e r w h o ’s i n a w h e e lc h ai r” w h e e lc h ai r ac c e s s ✘ 24
How curation helpsALISS adds curations from people with particular interests R e s o u rc e Ind ex P arti c k W alk i n g W h e th e r yo u are an e x p e ri e n c e d w alk e r o r h ave n ’t ti tle : P arti c k W alk i n g G ro u p G ro u p w alk e d i n a w h i le , o u r w alk s are a g re at w ay to k e e p fi t, g e t to k n o w yo u r lo c al are a an d m e e t n e w te x t: W h e th e r yo u are an p e o p le . All w alk s are fre e - an d th e re i s n o n e e d to b o o k - e x p e ri e n c e d w alk e r ju s t tu rn u p ! H o w e ve r, i f yo u are atte n d i n g fo r th e o r... fi rs t ti m e , p le as e arri ve 1 0 o r 1 5 m i n u te s b e fo re th e T h e g ro u p o ffe rs a Ctu o n t w alk i s d u e to b e g i n to fi ll i n a re g i s trati o n fo rmCC u rai o ra i o n i ran g e o f w alk s ... w i th th e w alk le ad e r. D o n ’t w o rry, th i s o n ly n e e d s u ra t n to b e d o n e o n c e . E ac h w alk las ts an h o u r an d b e g i n s an d e n d s at th e S o m e w alk s are lo c ati o n s li s te d b e lo w . w h e e lc h ai r ac c e s s i b le ... P arti c k An n e x e H e alth y L i vi n g C e n tre W alk s le ave fro m 9A S te w artvi lle S tre e tM o n d ays , 1 1 am -1 2 p m lo c ati o n s : G 1 1 5 P E (g e n tle h e alth w alk ). W alk le ad e r: Jan e T h u rs d ays , lo c ati o n s : G 1 1 5 P E 2 -3p m . W alk le ad e rs : Jan e an d An g i e tag s : w alk i n g , e x e rc i s e , c ard i ac , re h ab i li tati o n , tag s : w alk i n g , w h e e lc h ai r ac c e s s , m e n tal h e alth e x e rc i s e ac c o u n ts : 83d 5 f, 2 847 f, 02 d 4j, ... ac c o u n ts : 83d 5 fe , 2 847 fg , 02 d 4j, ... 25
Distributed collaborative curation the sum is greater than the parts C u ra ti o n↑ q u ali ty: m o d e rati o n & ac c o u n t fi lte ri n g Cu ra ti o n ↓ c e n tral c o s t d e vo lve d ad m i n C u ra t↑ s u s tai n ab i li ty ion 26
Filtering outputs from ALISS: search A Practice example: just our own resources local group library Our practice local group Local community p rac ti c e p rac ti c e Local practices Local NHS Citizens Advice p rac ti c e local groupp le - c li e n t s i d e to o ls c an s e arc h AL I S S h o w e ve r th e y li k e 27
Filtering outputs from ALISS: searchA Practice example: trusted local community resources local group library Our practice local group Local community p rac ti c e p rac ti c e Local practices Local NHS Citizens Advice p rac ti c e local group 28
Filtering outputs from ALISS: searchA Practice example: search accounts with NHS flag GGC local group NHS service library Our practice local group Local community p rac ti c e p rac ti c e Local practices Local NHS Citizens Advice p rac ti c e local group 29
ALISS technology status two development phases, implementation now starting d e ve lo p m e n t o f arc h i te c tu re an d• p ro to typ e - S e p 09-M ar 1 0 w o rk i n g m o d e l• - N o v 1 0-M ar 1 1 i m p le m e n tati o n n o w h o s te d b y L T C AS• - e n g i n e ti c k i n g o ve r s i n c e p h as e 1 - b as i c s 80% c o m p le te - to o ls 1 0% 30
Aliss across the webA range of ways to access ALISS data:• ‘Gapp’: social prescribing support for Glasgow GPs • Living well @ the Library: below the radar local community collaboration • A ‘powered by ALISS’ search box • Latest screencast re tech