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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