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Access to local information to support self Management
[‘Living Well with a Long-Term Condition: Finding Local Supports’]
An Elevator Pitch…Nov ‘09
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Why bother? The changing profile of Scotland’s population
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The original Brief:‘Better Health Better Care’ Action Plan
“A self management framework is required in each area to identify existing support systems and provide a map for staff and the public. It will include
– details of the different kinds of support available • in a particular area, • or for a particular condition at each stage of the patient
journey,
– details on group activities, condition specific and generic self management programmes, mental health services, motivational coaching; carer and family support and telecare support.”
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We needed to start somewhere:a scenario
You’ve been diagnosed with a Long-Term Condition…(e.g. rheumatoid arthritis)– Got the pamphlet about the disease and how worried
to be about it
• You’re minded to try ‘self-management’ of the condition– Got the general advice about living with it
• Which suggests you need to go & find out some stuff….
• What help d’you commonly find?
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How about this?
Yes, maybe a start, but what if
I want local info??
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Or these? Useful as far as they go, but they do rather tend to stick with static info like service HQ, or buildings.
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Or this?
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Meantime,what about these?
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…Which can generally be found in places like this
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Our take on all this:
"When I see things available to me locally, I need to know if I can do it on a Thursday afternoon, which is the only time my caring responsibilities allow. And I need to know if I can get a bus there - I don't have a car”
– So the general phone number for the Centre, or worse the organisation’s HQ, doesn’t really help enough?
– If institutions could really help, they would be doing it already, surely??
– …There seems to be a problem.– Time for a different approach??
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We think…
• …that this sort of specific, fluid, information is what we want to help develop.
• That it can best be:– Gathered– Sorted & made sense of– And made available where you are…
….Socially!
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How we’ve approached this
In summary:– Early rehearsals
• ‘Being patient’ – ethnography in south Edinburgh
– Health Literacy work• With adult learners in Pilton & Sighthill
– Other scoping:• ICT Architecture and Design• Involving schools and students• Open Innovation process
More…
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Our Approach 1/4What might people find useful?
• Early rehearsals– ‘Being patient’ –
ethnography in south Edinburgh
• Health Literacy work– Two groups of adult
learners with a range of LTCs
– Constructing their own experiences within a Learning process
– Tutor pack, videos, etc. for use elsewhere, to come
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Our Approach 2/4Technology architecture (outline)Information capture:
• Harvesting via search
• Social book-marking
• E-form
• Photo & upload
• Etc.
Sense-making, organisation, and storage:
• Semantic mark-up
• tagging & cataloguing
• etc.
Information availability:
• API
• Feeds
• etc
Information presentation:
• Browser
• Mobile
• Clinical system
• Blog
• widget
• Etc.
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Our Approach 3/4Involving schools and students• Thus far we’re approaching:
– ‘Curriculum for Excellence’ frameworks • health & well-being, social science, technology, etc.
– Learning exercises to support CfE ‘experiences and outcomes’ within each framework
• for school students– E.g. Search & find, sense-making, upload to web, garnering
patient experiences, crisp telephone manner when speaking to service-providers, class projects on web-application development, etc etc.
– Intending to work with • local secondary school and feeder primaries• Teacher networks• …to create a series of ‘exemplars’ with which to inspire
other teachers, hopefully
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Our Approach 4/4An open innovation processModels include:• Social Innovation camp• ‘user-centred design’• Open Ventures Challenge
We’re planning to meld these:• Recruit via
– LTC Alliance member organisations– ‘Geeks with Heart’ networks
• Run a series of warm-up workshops for both communities• Run a camp – but phase the event so that people with LTCs can
make a real contribution at the time• Broker support from wider ICT and Change communities for the
range of prototype applications and business plans that we hope will result
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Open Innovation processDraft Outline Innovation Process Timeline – to be improved, and ‘subject to change’...
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What about consolidation & follow-through?
• Governance development• Storage development• Directory Provider engagement
– Data– Sense making & curation– Presentation– Etc.
• Software/business development• CfE & adult literacies consolidation• Work to scope the ‘infointentionaction’
process of engagement
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What might success look like?
• A bit early to say…but
• Where one might look for signs– Clinical consultations– NHS24 call-handling– The intermediaries’ (librarians/pharmacists/…)
response– When a friend Googles on your behalf– A growth in mashups
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Links:
• ALISS Project Blog, – at http://www.aliss.scot.nhs.uk/ – ‘Being Patient’ – – early rehearsals for finding local information, at http://inthelongterm.wordpress.com/
• Current information provision, shining examples:– Active Scotland at http://www.activescotland.org.uk/ – Brown Book at http://www.brownbook.net/ – Grampian Care Data at http://www.grampiancaredata.gov.uk/ – Health in Hand at http://www.bordershealthinhand.scot.nhs.uk/ – NHS24 (Support Groups directory) at http://www.nhs24.com/content/default.asp?page=s46
• Better Health Better CareEnsuring better, local and faster access to health care
(& The Self Management Framework) at http://www.scotland.gov.uk/Publications/2007/12/11103453/5
• The Long Term Conditions Collaborative ‘Improving Self management Support’Chapter 3: Better access to information, advice and support, at http://www.scotland.gov.uk/Publications/2009/06/02153313/4
• Innovation:– Social Innovation camp (Scotland) at http://scotland.sicamp.org/ – Open Ventures Challenge at http://ovc.mo.jo/
• LTCScotland delicious tag cloud – at http://del.icio.us/LTCScotland
(please add it to your network!),
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contact
“The Access to Local Information to Support Self Management ( ALISS) project is using new and emergent mobile technologies to empower people with long term conditions to support each other by easily accessing, co-creating and sharing information.”
christine.hoy-at-scotland-dot-gsi-dot-gov-dot-uk