21/09/2009 1

Bowling TogetherAccess to Local Information to Support Self Management[‘Living Well with a Long-Term Condition: Finding Local Supports’]

engagement, innovation, co-creation, mutuality…“It’s OK to be exciting…but not too exciting”

Presentation to BCS Health Scotland Conference ‘Empowering Patients to gain more from eHealth’21st. Sept 2009

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On the menu today

• Context – Demographics; policy; the concept of ‘self-

management’• Our take on the context

– Looking at what’s available just now• What we’ve been up to so far • A bit more on the informatics

– [if time allows: more details on other work-streams ]• Next steps – as far as we can see • What might success look like? • Finish

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What this is all really about

…engagement, innovation, co-creation, mutuality…and informatics…

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Why bother? The changing shape of Scotland’s population

Demographic change for population aged 65+ ScotlandPotential impact on emergency bed numbers 2007-2031

0

2000

4000

6000

8000

10000

12000

14000

16000

Y/E Mar 2007 Projected2011

Projected2016

Projected2021

Projected2026

Projected2031

Year

Be

ds

9%24%

41%

61%

84%

Calendar year ’07 estimate

P Knight Scottish Government

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The original Policy Brief A ‘Self management framework’

‘Better Health Better Care’ Action Plan:

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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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Clinicians view of Self Mgt

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15 min per month

= 3 hours per year

Copyright 2004 FreePhotosBank.com

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People are already ‘self managing’

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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 these?

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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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…So just for example you could get this sort of thing…

Try a mental ‘search & replace’ of ‘Tube Station’ with ‘condition management class’?

This working model was built in less than 48 hours…by a team of enthusiasts

…as well as making the info pop up in clinical systems, support NHS24 call-handling, appear in directories, etc

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How we’ve approached this

Thus far, in summary:– Early rehearsals

• ‘Being patient’ – ethnography in south Edinburgh

– Finding out what might be helpful• Health Literacy work with adult learners

– 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 [video ]

• 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 in adult learning 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.ALISS Beyond ALISS

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Our Approach 3/4a Involving schools and students

Thus far we’re approaching:– ‘Curriculum for Excellence’ frameworks

• health & well-being, social science, technology, 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 3/4b Involving schools and students

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.

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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 subsequent 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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For more details on what we’re up to

In summary:– Early rehearsals

• ‘Being patient’ – ethnography in south Edinburgh– The blog; the video

– Health Literacy work – Other scoping:

• ICT Architecture and Design • Involving schools and students • Open Innovation process

More…

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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, SME involvement, etc.

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Health literacy as context

Ensure prototype specification is informed:

• by experience of people who are disadvantaged by poor literacy skills

• by experience of people living with long term conditions

More…

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A definition

“the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”

US Dept of health and Human Services

More…

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Why health literacy?

• Vital to consider literacy when developing national programmes on access to health information

• AMA found health literacy is stronger predictor of health status than income, employment status, education level, race or ethnic group

• People with poor literacy skills have poorer health status, less knowledge of self management and health promoting behaviours

More…

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One of the Adult learners groups we joined in with

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Material for decoding by the group

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Some ‘critical thinking’ in progress

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What did we learn?• Information about local support to self

manage is often there but hard to access• People do not always expect quality

assured information• Seems like everyone has a phone and

TV?• Local means really local!• People get info from untraditional sources,

huge amount of social networking / informal sharing

More…

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Literacy – basic questions of any information

• Authorship– Who are they, are they qualified to provide the info, what are their

affiliations?

• Attribution– Does it look reliable, is it referenced in any way?

• Audience– States intended recipients & targets?

• Currency– Info up to date/dated at all?

• Disclosure– Who owns/sponsors the info, do they have a vested interest?

• Double check– Use more than one source, and where possible in co-operation with a

health practitioner[With thanks to PIF]

More…

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The ICT eco-system: Information capture

• Harvesting via search

• Social book-marking

• E-form

• Photo & upload

• …

More…

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Typical data for capture More…

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Can we build on publicly available data?

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Would this information be enough to convince you to go along? What more might do the trick?

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Sense-making, organisation, and storage:

• Semantic mark-up

• tagging & cataloguing

• …

More…

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Sense-making

And ‘Science behind the news’-style semantic mark-up

More…

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Information availability:

• API

• Feeds

• …

More…

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Information presentation:

• Blog

• Browser

• Clinical system

• Mobile

• widget

• ...

More…

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Try a mental ‘search & replace’ of ‘transport’ with ‘condition management class’?

This working model was built in less than 48 hours…by a team of enthusiasts

Pop-up in clinical systems, support NHS24 call-handling, appear in directories, etc??

More…

21/09/2009 46

Open Innovation processDraft Outline Innovation Process Timeline – to be improved, and ‘subject to change’...

More…

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Links:

• ALISS Project Blog, – at http://ltcsignposts.wordpress.com/

• ‘Being Patient’ – – early rehearsals for finding local information, at http://inthelongterm.wordpress.com/

• 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

• 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

• Curriculum for Excellence Experiences and Outcomes– http://www.ltscotland.org.uk/curriculumforexcellence/experiencesandoutcomes/index.asp

• Innovation:– Social Innovation camp (Scotland) at http://scotland.sicamp.org/ – Open Ventures Challenge at http://ovc.mo.jo/

• The Long Term Conditions Action Plan– http://www.sehd.scot.nhs.uk/mels/CEL2009_23.pdf

• 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

• LTCScotland delicious tag cloud – at http://del.icio.us/LTCScotland

(please add it to your network!)

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Acknowledgements:

• Lawn Bowls at Alloa Bowling Club– http://www.wee-county.org.uk/bowling/

• Mark Duman for his 6 points on (health) literacy – see this topic at the Patient Information Forum: – http://www.pifonline.org.uk/index.aspx?o=1106

• Open Ventures Challenge– http://ovc.mo.jo/

• Partnering in Self-Management Support: a tool for Clinicians (Institute for Healthcare Improvement)

– http://www.improvingchroniccare.org/index.php?p=Self-Management_Support&s=39 • Robert Putnam’s book ‘Bowling Alone’:

– http://www.bowlingalone.com/ • Social Innovation Camp

– http://scotland.sicamp.org/ • [Tantalising glimpse of] ‘The Science behind it’ (a web application built “in less time than it takes

to have the meeting about whether to do it or not”) that enables you to parse a web page for its intrinsic structures. Currently withdrawn for an upgrade.

– http://thesciencebehindit.net/ • Young RewiredState:

– Emma Mulqueeny’s own reflections on YRS: http://mulqueeny.wordpress.com/2009/08/24/young-rewired-state-it-happened/

– Useful overview & links at the Public Strategist blog: http://publicstrategist.com/2009/08/yet-more-rewired-state/

– YRS site: http://rewiredstate.org/young

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To re-cap

• The demographic ‘supertanker’• Mainstream directories useful but not quite

there, really• The importance of health literacy as a context• A loosely-coupled information architecture

– It’s not so much about building something as setting out an eco-system that others can explore

• Schools, educational experiences & outcomes, & hunter-gathering

• Innovation & ‘appreciative enquiry’• Everyone can (well, must) join in, in some

way.

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For more information

“The Access to Local Information to Support Self Management ( ALISS) project is using new emergent and mobile technologies to empower people with long term conditions to support each other by easily accessing, co-creating and sharing information.” 

Contact:christine.hoy-at-scotland-dot-gsi-dot-gov-dot-uk

ALISS Project Blog:http://ltcsignposts.wordpress.com/