Key learning points: 1. Linking data can also mean connecting people with others 2. Be aware of the need to take a step-wise approach to the development of linked data 3. Consider supporting services and community building, not just technology !!! Intro: • Scottish Gov funded project • Acronym ALISS • But advertised as Access to Local Information to support better health • Weʼre working with the title and the scope all the time - hopefully will become clear why • The other S will be explained • Small team in Edinburgh • To describe the project Iʼm going to give you some background on the problems weʼre trying to address • The Engine - the idea - should point out that it has been prototyped and currently in the process of being built.
Challenge 1 - LTCs • At the heart of the ALISS project lies the growing challenge that long term health conditions present • LTCs range from diabetes, chronic lung disease, heart disease and cancer. Heart disease, MS - the well known - to maybe less thought of as LTCs eg. depression, - to less well known rarer diseases. • The World Health Organisation (WHO) defines long term conditions (also called chronic conditions) as health problems that require ongoing management over a period of years or decades. • In Scotland around 2 million people ca 40% of the population live with a LTC • According to the Department of Health Over 15 million people in England currently live with long-term conditions • They represent 55% of GP appointments, 68% of outpatient appointments and accident and emergency (A&E) attendances, and 77% of inpatient bed days. • In total, they account for around 70% of NHS spend • The predicted huge rise in the numbers of people living with long term health conditions in the coming years is a challenge to health systems worldwide.
SELF MANAGEMENT • Living with a long term condition can impact on many aspects of life including mobility, social interaction, self-confidence, mental health, employment, education and financial stability. • Medical management is only part of the story and equipping people to live well with their condition goes beyond providing information about particular conditions. • Self management is an approach encouraged to enable people to manage the effects of such conditions on daily life. • Self management is a person-centred approach in which the individual is empowered and has ownership over the management of their life and conditions (1). Living well with a long term condition requires confidence which is gained by having clear understanding, information, advice and knowledge of local and national support networks. • Support for people diagnosed with a long term condition is provided by health and social services and voluntary organisations. Some are set up for specific conditions, others address generic needs, such as walking groups, buddying, providing information, emotional support, complimentary therapies. • Examples: lifestyle management classes, exercise classes, social groups, carer support, ..... Through to choirs and stand-up comedy • This is about a support not necessarily health info • Prevention of long term conditions and promoting self management is a major goal in national policy and service development . To be confident self managers, people need good information, advice and support networks.
Back to the title ALISS - the last S is to support self management So thereʼs a big social challenge here - lots of people who need helping support to develop good self management. Helping people to help themselves to live better with their conditions...
But we&apos;re faced with a problem. How do people living with long term conditions find out about the range of activities and support that may be on their doorstep?
Much of the support that is provided is at a local level, often dispersed around the community - in church halls, community centres - delivered by charities and community groups. Can range from national groups to small teams with limited budgets. How do they get the word out about their services? - they have to use a range of channels - posters, newsletters, leaflets, local papers and increasingly the web. And there are a range of places we might go to find out whatʼs available - libraries, GPs, pharmacies, local papers, the web .... So there are lots of people out there trying to keep up to date with whatʼs happening locally.
You&apos;ll often find good examples of support on your community centre or library notice board.
We did some early discovery work which confirmed that a search of the web missed the vast amount of local support available. Imagine trying to find the information on your community centre notice board online. In addition people have for years been trying to aggregate this stuff on the web.
Traditionally, public sector and voluntary organisations have collected information about groups and activities to create printed or online directories. Scotland has a good number of excellent aggregation services. All of these services are great but they are often not linked, silos of info that constantly re-invent the wheel and duplicate effort. These services have a number of common challenges: Keeping data current • It&apos;s a full time job to maintain accurate records • Services need to regularly contact organisations, log their activities, update the record and then supply the information in a meaningful way to people • This is a lot of work Reflecting smaller, less visible services • useful self management support may be provided on a small scale, for instance just one person who organises a walking group, a carer support network at a church hall. • This is difficult to discover and unlikely to have an extensive web presence, if at all. • These are less likely to be reflected in directory services and poorly indexed by the general search engines. • Learning from those living with the conditions • People living with conditions often have the best inside knowledge, know the best places to go, people to see and networks to tap into. • Information about self management support is richer and more useful when it allows contribution from, and curation by, service users. • Individuals need the means to contribute. Reusability of data • Directory services traditionally create silos of information that require us to visit them in order to access the data. this useful locked up information is hidden from the major search engines.
The web is changing • using the web to find useful local resources is a challenge and traditional approaches of creating online directories don&apos;t reflect how people seek and use information. • Many of the services assume that people will &apos;go to&apos; a site and are searching for this information. Assuming they want lists of things.... • our work suggests that they want info about whatʼs happening but they also want to connect with people and services that can help them to access support - they would benefit from knowing about the experiences of others - and from learning about something that they werenʼt searching for.... • Weʼre moving beyond a web of pages, towards a web of data. This makes it possible to access information through multiple channels to multiple devices without the need to search in the traditional way. The social web provides new ways for people to share their experiences, recommend resources, connect with and support each other. • In the future we need to build infrastructure that allows people to find the information in the way that works for them, this isn&apos;t necessarily via a search box. So, we reckon that the current experience of finding support self management looks something like this
The Engine: the ALISS project takes a different approach. Wouldnʼt it be great if there was one place for the people providing the services to put their information - and then one place for those looking for it to get that information? It sounds radically simple and, of course, people have been aiming to do this for a long time – but… ALISS won&apos;t be another web site - but an index of links - At the heart of the project is the ALISS Engine - an underlying web infrastructure that will improve the contribution and findability of data, indexing links to a diverse and dynamic set of resources relevant to self-management support. • Our aim is to link existing data, making this wider collection openly available via an API, allowing new opportunities for consumption and new types of contribution, enhancing, not replacing current information services. We want to explore how the Engine can deliver better, more tailored, more local information - making stuff more findable
Hereʼs an example: • many sites not well indexed by search engines • can&apos;t tell Google how to index your stuff - or at least the people that are creating many of the web sites weʼre interested in arenʼt doing that much to help... • Example - Angus Cardiac - Google vs Capturing in the Engine A good example is a group weʼve been working with - the Angus Cardiac Group. They provide support and self management classes for people with cardiac disease in the Angus region. Their web site is developed and maintained by an enthusiastic volunteer whose aim is to give the group a web presence - not be an SEO expert.
Searching for the Angus Cardiac Group on Google is successful - but if someone who lives in Carnoustie (where ACG have a class) searches for Carnoustie Heart Group - they wonʼt find it - even though the ACG site mentions it....
This is a screen shot from a prototype that was built in the early stages of the project to demonstrate that by indexing the AGC URL and giving it some simple metadata which included a text summary describing the content, and latitude, longitude and used Yahooʼs Where On Earth Identifiers which allowed us to describe services that are area rather than point based.
the location of the ACG classes in Carnoustie and Montrose were noted and returned in a search of the engine. Through the development of the Engine, we can provide advice and tools to improve what is available to search engines. Paradoxically, the ALISS project could improve the Google rankings of the sites weʼre aiming to index • This doesnʼt matter because our aim is to make self management resources more findable • In the example of the Angus Cardiac Group - they have one place to submit the information and those seeking that information have one place to find it. Info providers that currently have a directory of local services can make their data available to the Engine, making the info more widely available than if theyʼd just published it on their own web site.
Hereʼs the proposed architecture of the Engine: Data in • Taking in links to existing data in larger amounts - Working with existing directory owners • Or people can submit it themselves - maybe a web form on a charity site or a form you fill in at the library or community centre? - just a link, a short description, location and tags Submission of links to new individual resources - links to sites that havenʼt been picked up by the directories &gt;&gt; events, tweets, pictures, people, services • We can draw info in directly from sites • Sprints and community sourcing - developing online tools and processes that enable resource discovery and submission. Data handling Identifiers • We can use resources with stable URIs from other national systems, for example activescotland.org.uk with its database of facilities and groups. • Or we can provide a stable ALISS URI to resources that may be hard to find online, or are liable to have ephemeral URLs of their own. We’re feeling our way with this - need to learn - ALISS can stabilise - can use URI to reference Moderation • One of the first issues that arose was ʻquaity assuranceʼ of the information - the ALISS engine aims to make information more findable not act as a quality filter - however, we can build in moderation and flagging mechanisms that will help to make the info relevant Example: A local group submit some information on a group they run via a ʻsubmit to ALISSʼ form. The group are not ʻknownʼ to the Engine, and so any data they submit is not immediately trusted. It is flagged as ʻfor moderationʼ and stored in the Engine, but will not be made available to any queries to the Engine. A community that have an account with the Engine that allows them to moderate resources then review this resource and flag it as fit to publish. That resource is then available to appropriate queries to the Engine. The community also tag the resource as being relevant to particular LTC topics, for example using terms like ʻarthritisʼ, ʻpain managementʼ, and ʻmoderate exerciseʼ. In this way, the community act as a filter for content, making it easier for queries to retrieve useful resources. How it will be built Not going to discuss it but will mention opensource on Github... 3. Data out API Key features - • support a reporting (feedback) mechanism, so that resources that are considered harmful or inappropriate can be reviewed. • to include a method of versioning, and allowing different levels of detail in the data returned. We will use JSON and/or XML as partners prefer ??? • Additional (sets of) metadata A partner directory service could therefore add its own curated (assured) structured metadata to a resource, manage that metadata, and retrieve it via the API. So a partner service could query the Engine for any resources relating to ʻarthritisʼ which also have attached metadata belonging to that service. The service effectively has its own data within the Engine, collecting it and managing it, while publishing it to the world. Search Weʼll build in search functionality that allows existing services to query the Engine either integrated with their own search or perhaps as a ʻpowered by ALISSʼ option - the added value here is that they can return information that is related to the original search, drawing from much larger body of information that their own database might contain. For info providers such as libraries this could reduce the number of places that people have to search to find what theyʼre looking for Additional info - could be a powerful added value to include quality assured info about conditions along with self management activity info - so for example a charity site for cardiac rehab might deliver heart condition info from NHS 24 Widgets One of the areas that weʼre interested to explore is the use of widgets to deliver additional layers of information. For example - comments about self management classes / tweets? The ALISS Engine as part of a linked data ecosystem ALISS can play three roles: 1. Using resources with stable URIs from other national systems, for example activescotland.org.uk with its database of facilities and groups. 2. Providing a stable ALISS URI to resources that may be hard to find online, or are liable to have ephemeral URLs of their own. 3. Linking resources in useful ways, for example linking a local exercise class with user experience of the class on an online forum.
Not all about the tech Remember this is a blueprint - it doesnʼt actually exist yet • this is a rather technical picture - but our lesson during the process has been that it is important for us to concentrate not on the technology but actually understanding social processes and what people might want to do with information once it is made available... • Want to share a little of how we got to the blueprint: In order to respond to the information needs of a diverse community, we needed to understand what they are and who is involved. • We involved potential users of ALISS in the design process. We tested ideas for the Engine by asking people living with long term conditions, and providers of information services, to imagine and describe services that would improve living with their condition. • We created a series of workshops bringing together people with living with long term conditions, practitioners, researchers, managers, web developers and information providers. • We worked with service designers to create an environment that fostered new ways of thinking, • we gained some fantastic insights into what was really important, such as problem of social isolation, boosting confidence, connecting with other people, sharing experiences and helping each other. • Ideas developed around time-banking, buddy networks and information services for those newly diagnosed with a condition.
Throughout the process we continually asked ourselves, what would these ideas for potential services need from the Engine and what could they contribute to it?
Our process culminated in a 2 day event where ideas were developed in more detail and finished off by teams presenting a &apos;business plan&apos;.
One of our goals was to explore the idea that, with an ALISS Engine in place, we could develop an environment where people with long term conditions and others would be enabled to develop their ideas into working services, small businesses or social enterprises. People living with long term conditions are an untapped resource, they have great ideas about how they can collaborate to help themselves and each other to live well. We tested the concept of the ALISS Engine with some excellent examples of self-management support that people really want.
What next? Weʼre in a collaborative development phase - by which I mean weʼre working with others to build it so that we fit with their needs. The plan is to build the engine to be completed by March 2011- Weʼre going to build it in conjunction with the community - looking at : • Data Exchange - how will the Engine be used by different aggregators using different platforms? • Additional indexing layers - who will be best placed to add metadata and curate the information within the Engine? • Presentation of associated health information - how can links be made to serve up related information from trusted sources to add value to indexed links? • Moderation & resource flagging across distributed networks - who and how will moderation be best achieved? • Reputation levels - can &apos;trusted&apos; providers / moderators/ referrers earn credits for their contributions? • Development & use of API and Widgets • Dealing with duplicates - what happens if the same resource is submitted from different sources?
ALISS as a service and Platform for innovation Two exciting thoughts for the future: • Firstly, having got all of these people together to talk about what new services might look like we realised that we had developed a new network - informal meet-ups and collaborations have happened and we see this as a great potential for future collaboration - we see ALISS as a set of services bringing together people who want to make a difference in self management. • Secondly having brought together a national set of links to self management resources, we can start to encourage people to develop ideas of new services that draw from it. We see ALISS as being a platform for innovation...The range of possible client applications cannot be predicted, and the point of the ALISS architecture is to encourage new uses and users - staying flexible to respond to unforeseen requirements. Summary • Rather than creating another website or single solution, we&apos;re developing an infrastructure that allows existing information services to be linked and better utilised. We want to make self management information more findable. • The ALISS Engine could be a central hub of a linked data ecosystem • Using resources with stable URIs from other national systems • Providing a stable ALISS URI to resources that may be hard to find online, or are liable to have ephemeral URLs of their own. • Linking resources in useful ways, for example linking a local exercise class with user experience of the class on an online forum. • This isnʼt just about the tech - Think about the reasons behind linking things up – Linking data can also mean connecting people with others. Every individual is both a source and consumer of information and the ALISS project seeks to recognise this. This will create an ecosystem where people living with long term conditions and those providing resources for self management can manage linked resources and create new services that draw from this new national set of data. • Itʼs important to consider supporting services and community building, not just technology