Aliss At Bcs Health Scotland Sept 09
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The document discusses the ALISS project which aims to empower those with long-term conditions by making local support information easier to access, create, and share. It does this by developing an information architecture and open innovation process to gather, organize, and present local health resources. The goal is to move beyond traditional static directories and engage various groups like schools in contributing to a more fluid and socially driven system.
![Bowling Together A ccess to L ocal I nformation to S upport S elf 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’ 21 st . Sept 2009](https://image.slidesharecdn.com/alissatbcshealthscotlandsept09-090929072502-phpapp01/85/Aliss-At-Bcs-Health-Scotland-Sept-09-1-320.jpg)
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Aliss At Bcs Health Scotland Sept 09
- 1. Bowling Together A ccess to L ocal I nformation to S upport S elf 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’ 21 st . Sept 2009
- 4. Why bother? The changing shape of Scotland’s population
- 5. Calendar year ’07 estimate P Knight Scottish Government 9% 24% 41% 61% 84%
- 6. The original Policy Brief A ‘Self management framework’ ‘ Better Health Better Care’ Action Plan:
- 8. Clinicians view of Self Mgt
- 10. People are already ‘self managing’
- 13. Or these? Useful as far as they go, but they do rather tend to stick with static info like service HQ, or buildings.
- 14. Or these?
- 15. Meantime, what about these?
- 19. … 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
- 32. One of the Adult learners groups we joined in with
- 33. Material for decoding by the group
- 34. Some ‘critical thinking’ in progress
- 38. Typical data for capture More…
- 39. Can we build on publicly available data?
- 40. Would this information be enough to convince you to go along? What more might do the trick?
- 45. 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…
Editor's Notes
- Robert Putnam’s ‘Bowling Alone’ focused anxieties on the decline in collaborative social activity – the loss of ‘social capital’ that this creates. He shows “how we have become increasingly disconnected from family, friends, neighbors, and our democratic structures…” We’re trying – in a very small way – to promote collaborative activity and contribution to shared ‘capital’. So that’s why the rather laboured cross-reference to RP is included in the presentation title. The quote about being exciting is a paraphrase of a suggestion by one of the project sponsors recently.
- The picture is of Alloa bowling club, enjoying Bowling Together, and creating social capital while they do this. But in future, about half the people in the picture will have direct experience of a Long-Term Condition… I felt a bit of a fake talking to an informatics conference about a project that is really only partly about informatcs. It’s really much more about the other words on this slide.
- Note the ‘bulge’ moving through the age profile of the overall population starting in 1951, resulting in the ‘supertanker’ appearance projected forward to 2031. This relative preponderance of older people vis-à-vis those of working age will not necessarily last for ever, but will have significant societal effects for 20-30 years or more. The challenges that this changing age profile will be likely to represent, amongst other demographic aspects of the prevelance of long-term conditions and associated problems, is discussed briefly in the Long Term Conditions Action Plan (see http://www.sehd.scot.nhs.uk/mels/CEL2009_23.pdf ) which text is replicated also in the ALISS Project blog at http://ltcsignposts.wordpress.com/about-this-project/the-demographic-backcloth/ This slide and the next are borrowed from a presentation given to hi-heid-yins in the NHS and Local Authorities in May 2009. And the material has been shared in a variety of planning and policy contexts since.
- Keeping NHS and care service activity patterns the same, and projecting this scenario forward, as illustrated here, shows what the outcome might be: A trend of year on year rising demand for hospital beds in our acute hospitals. Specifically, we would anticipate by 2016 a 24% rise in beds occupied by older people admitted as emergencies – that’s around 1800 more beds, which equates to three more Wishaw General Hospitals! ( http:// www.wishaw.scot.nhs.uk / ) Extending this further to 2031, the scenario would require more than 6000 extra hospital beds. That’s more or less a new District General Hospital needed every three years. Quite apart from the money and other resources and processes needed to accomplish this, where would the staff come from, to run them all?? This potential extra demand for acute hospital beds underscores the need to take action – both upstream to reduce the need for hospital admission in the first place – and, where emergency hospital admission has occurred, by reducing length of stay through improvements such as effective discharge co-ordination.
- Policy Context: BHBC suggests each Health Board should implement a Self Management Framework, the envisaged scope of which is represented here in the diagram. But what might such a relatively high-level description of a Framework look like on the ground?
- BHBC went some way towards outlining what a Self Management Framework might include, in its text (p. 43), which this slide paraphrases. It begins to look as though something like a Directory of Services was envisaged. Were Health Boards in the middle of doing something along these lines locally? If they were, it would behove the SGHD not to suggest that they embark on what they were part way towards already. But first, a little more on ‘Self Management’…
- 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.
- People are already self managing – the idea of the range of activities that people do being grouped under one label is a very institutional world-view. People’s needs are very variable. Some may need more intensive face to face support for instance people with learning disabilities or mental health problems, some may need longer or shorter appointment times, sometimes a telephone call is all that’s needed, or signposting to support organisations, leaflets, website, buddying, swimming classes. Telecare solutions are becoming an important means of people maintaining their independence in their own homes. All these sources of support may be available but you need to know it’s there and how to access it.
- We set up a mock-clinical encounter between our Project Manager (a Practice Nurse in real life) and our researcher, who was then sent off out into his local community to see what he could kind, to help him live well with his circumstances. Besides being ‘recently diagnosed’ with rheumatoid arthritis, the researcher was also told that he needed to loose some weight, and be aware that he would be likely to ‘feel rather low about all this’ (we did not want to go any further towards identifiable mental health problems). In practice the response from community information-intermediaries was markedly different when approached about ‘feeling low’. Almost everyone immediately signposted our researcher direct to health resources. Whereas for rheumatoid arthritis, the range of potentially relevant resources seemed much easier for them to discuss, and to advise upon. Our researcher blogged about his search on ‘Being patient’ (see links). It should be noted that this ‘ethnography’ in no way attempted to appreciate the broader physical, mental and emotional implications of undertaking such a search while actually having a combination of LTCs – what we were after at this earlier stage was some understanding of the information considerations. Interestingly though, when our researcher did himself fall ill over the summer, he did indeed experience some of the broader implications of trying to find out about his condition while distinctly ‘under par’ and exhausted.
- Back at base, we used the same scenario to inform a search on available resources – specialist/portal, mainstream Health Board sites, and other types – to see what a reasonably literate member of the public could turn up. Not a great deal, as far as we could see. This and the following few slides show selected examples of the sorts of resources we could find without too much difficulty.
- It seemed plain that our institutions were doing as best they could, on the basis of the tried and tested institutional model, where a database is set up somewhere centrally and is thereafter maintained by reminding those with entries in it that their information has fallen due for renewal. But there doesn’t seem much of a link between that administrative process, and the actual various aspects of the business of service provision. As a result, the searcher is left with a lot of legwork to do, which needs a good deal of persistence. Which you may not have, if you are feeling unwell and ‘low’ about your circumstances generally.
- We thought that it was worth exploring the potential for more of a community approach – a sort of ‘LTCs Wikipedia’ if you like. Whether the information was complete, or accurate, would be a shared responsibility rather than a purely institutional one. The NHS in Scotland strongly emphasises ‘mutuality’. We would attempt to put this into practice.
- We came across this website by chance – it was one of the finalists at the autumn ’08 Social Innovation Camp in London. This discovery was one of those ‘mental search & replace moments’ Here’s how it works: ‘ Official’ information e.g. the location of the tube station is made publicly available (as in ‘free our data’, etc.) The creators of the accesscity application ‘mash’ this up together with publicly available functions, to make it possible for members of the public to: Rate the facilities (upper right) Share feedback (middle right) using various media (text message, email, Youtube video with a link pointing to it, etc.) Also a community (of sorts) becomes available – see the avatars above the Youtube image. The name below each one is clickable, enabling communication within the community. And people beyond it can ask what it’s like. Not shown on this screenshot - but technically easy to add – is an RSS feed. So if you have an interest of any kind in the facility (user, owner, emergency engineer, ‘Friend’ (as in Friends of’) etc.) you are thereby alerted to subsequent postings. Handy if you are the organisation responsible, should someone use this facility to point out a problem that’s recently occurred. Or if you are a user, you could be alerted to a temporary closure, diversion because of a staircase being under repair, etc. It seemed that this sort of facility could be as useful for any form of group, as for the users of a transport facility.
- Subsequent slides (‘Our Approach’ 1-4) outline what’s on the list here.
- Our early ethnographic rehearsals have already been referred to. Meantime we wanted to learn more about how people with low literacy skills obtained, processed and understood information to support themselves in their own communities. We were less interested in information about particular health conditions (which will be provided by the National Health Information Support Service/NHS Inform), and more focussed on questions like “how do you find out about the nearest exercise class” and “what time does it start?”, “will I need to wear lycra?”, “what do others think about it?”. Our key aims for this work were : engage with disadvantaged communities who are at higher risk of poor health outcomes use this knowledge to inform development of prototype (technical architecture workstream) develop a methodology and learning materials which can be re-used by other adult literacy groups and programmes share findings with literacy, education, health and social care groups add to intelligence on national approaches to health literacy contribute to highlighting the link between health literacy and health improvement We were lucky enough to make links with an Adult Learning project locally. CLAN ( C ity L iteracy a nd N umeracy), a partnership project based in Edinburgh and funded by the Scottish Government, agreed to collaborate with project staff, which included representatives from Long Term Conditions Alliance Scotland (LTCAS), CLAN and the Long Term Conditions Unit of the Scottish Government. 12 adult learners, already enrolled in a programme established by CLAN, were asked for their help with the project. Learners had a variety of reasons for enrolling, which included dyslexia, poor health including sight problems and negative school experiences. It was noted that, despite their young age, all participants had a long term condition or cared for someone with a long term condition. The ages of learners varied between 24-50. The aim was to capture during one week, the experience of adult learners as they looked for information about local sources of support. An important part of the exercise was to gather feedback on “does it all make sense?” in terms of obtaining, processing and understanding information. We were also lucky that Adult Literacy workers were already collating ‘Learning is Good for your Health’, and awareness-raising and training pack on literacies, for health staff.
- This is unpacked in a little more detail later on in the slide-deck. For now: We se this as an ‘eco-system’ rather than as an application; If there are publicly available applications that support parts of what we need – for example if delicious.com supports the sort of social book-marking that we want to incorporate – then we aim to use that rather than construct our own. Not only because it’s cheaper, more because more of the people whom we wish to engage with are already familiar with it – why should they have to learn an institutional equivalent? We see Information (re-)presentation as beyond ALISS’ scope. Here we have accepted the ‘Power of Information’ line of argument, which suggests that large institutions should leave presentation to the imagination and fleet-footed capabilities of small institutions and individuals. So we intend to make the data freely available, and encourage others to come up with exciting and engaging things to do with it. We see the process of designing and building a series of prototypes that make up this eco-system as primarily an engagement project, rather than a technology one. It is not about building a prototype application. If we wish to engage Scottish people in running and using this, we need to start be engaging with them in building it.
- Our intention to involve schools and students works at two levels: First, as individuals and groups who stand to be right in the forefront of dealing with the ‘demographic supertanker’ referred to earlier, we want to contribute to their having an opportunity to consider the potential implications, for themselves, as early as possible. Second, we are well aware that community information eco-systems like the one we’re proposing don’t populate themselves by themselves – While we can harvest what’s already on the web, we do need to kick-start the local processes of fleshing out locational information, checking it, keeping it up to date, etc etc. That’s where the image of school visits to museums came to mind – school children are always being told off to go out and find out things, bring the information back and make sense of it in class later on. Meantime, institutionally, we have the once-in-a-generation opportunity that the introduction of Curriculum for Excellence represents (see links). If we can help some teachers create a range of teaching exemplars that support elements within the new curriculum, then we hope that this work-stream will become a self-sustaining part of ordinary school life.
- A wide range of potential learning experiences come readily to mind as soon as you begin thinking about this. We’ve listed a few (here) and some more are available in a separate file. The ‘Young RewiredState’ poster on the right of this slide is a cross-reference to an obviously enjoyed event for 16-18 year-olds in London (see Links) which we think could act as a model for higher-end school-student involvement – in the ICT at least.
- As suggested earlier, if we seek to draw people in to a collaborative approach to the eco-system, it seemed to make sense to start as we meant to go along, with the process of designing and building the eco-system itself. So we looked around for examples of open innovation processes. It should be noted that we won’t be slavishly following the examples listed here. When we reflected upon the experience of attending SI Camp Glasgow in the summer, it was readily apparent that the camp process (Friday evening to Sunday afternoon) would effectively exclude people with family commitments and others with long-term conditions who might not have the stamina for intensive work over such an extended period. We need to develop a process that will enable people of all types to be able to make their own various contributions – so although our current thinking is outlined in the draft timeline on slide 46 , we know this will unfold as we go along!
- This is a signposting slide for more (optional, depending upon interest and time available) detail on our various activities. In Powerpoint it allows you to hyperlink directly to the sequence you are interested in.
- This and the next slide are the final two at the ‘summary overview level - the ones following unpack our activities in a little more detail This slide is simply a quick list of things that we know we’ll have to tackle, once we’ve got some prototypes under our belt. The final (info intention action) item refers to some follow-on work that even now we know needs to be properly scoped and addressed. There’s not too much point in providing people with better information about what’s available to help them live well with their condition, without you also do the work necessary to engage them with actually doing something about it (turning information into behaviour, is another way of putting it). More to come on this.
- Here are some hostages to fortune…We acknowledge a certain amount of wariness towards two things: looking for any straightforward capabilities to define and measure clinical outcomes in the self-management domain generally; Being hoist with traditional formulae for Benefits Realisation. ROI (as in ‘Return on Interest’) is a lively topic in social media development circles - but no conceptual or other connection has as yet been made with the algorithms used in eHealth, as far as we are aware.
- Slides 29-36 unpack our activities thus far in Adult Health Literacies. We plan to publish a report on these soon.
- ‘ Critical thinking’ lies at the heart of what a lot of adult literacy work seeks to promote. And there’s evidence to suggest that the best context to provide health information in, if you want to shift behaviours, is an educational/ learning one, where people are making sense of the information they are accessing. Making sense of information is not just question of being able to understand the detail of what a pamphlet contains. Why does one information resource look the way it does, and why does another look different? - the presence/absence of advertising, for example, can usefully underpin a whole session. There are lots more beneficial learning exercises and experiences that can be built upon health and living-well information.
- We were lucky to avoid simply presenting people with information and asking them what they thought of it. The process of letting people ‘start from where they were’ with their own experiences and circumstances was a much richer one than it might have been - though at the time it felt more untidy! We were able to depart - at least somewhat - from the ‘pamphlet frame of reference’ that still seems to apply to much of health information activities and product, currently
- Some things that anyone can check out, to some extent, to make sense of any piece of health information
- This sequence of slides (37-45) unpack our early ideas for the ALISS Architecture and Design, a little. Each main aspect of the model (information Capture; Sense making and storage; information availability, and representation) are mentioned afresh, along with some pointers as to what we might mean by them.
- Typical information sources might include: Physical pamphlets; ‘ dead-end’ databases Existing web resources Web resources that are themselves derived (the South Edinburgh Calendar example here). The process of creating and refreshing instructions for a web crawler, and assessing the results, could be the focus for a series of collaborative, social and learning processes.
- In this example, a very useful nation-wide database of where activities take place, sometime goes into a little more detail of what takes place (see next slide) but at other times doesn’t. Can this be built upon by local ‘hunter-gatherers’? We hope that we can negotiate this!
- Most information won’t come already tagged - at least not with the tags that will help people find it within the context of long-term conditions. So some form of social book-marking, within communities of geography or interest or both, has potential for this essential sense-making, we think. Meanwhile, the application of semantics to straightforward web pages has further considerable potential to support the application of meaning (sense) and findability in our context. We’re keen to explore this, a little, especially the social process aspects.
- Less to say about storage options and data availability, beyond the API, Feeds headings.
- ‘ Official’ information e.g. the location of the tube station is made publicly available (as in ‘free our data’, etc.) The creators of the accesscity application ‘mash’ this up together with publicly available functions, to make it possible for members of the public to: Rate the facilities (upper right) Share feedback (middle right) using various media (text message, email, youtube video with a link pointing to it, etc.) Also a community (of sorts) becomes available – see the avatars above the Youtube image. The name below each one is clickable, enabling communication within the community. Not shown on this screenshot - but technically easy to add – is an RSS feed. So if you have an interest of any kind in the facility (user, owner, emergency engineer, ‘Friend’ (as in Friends of’) etc.) you are thereby alerted to subsequent postings. Handy if you are the organisation responsible, should someone use this facility to point out a problem that’s recently occurred. Or if you are a user, you could be alerted to a temporary closure, diversion because of a staircase being under repair,etc.
- What it says on the tin (title) especially the ‘subject to continual improvement aspect.
- NB. a Supertanker is not a timebomb (as in ‘demographic timebomb’). We’ve no intention of being determinist. Even though it may take 19 miles to stop…you can influence a supertanker. You do have to be determined about it though.