Call for Maps: Mapping Science Exhibit, 7th Iteration on "Science Maps as Visual Interfaces to Digital Libraries" (2011)

Background and Goals

The Places & Spaces: Mapping Science exhibit was created to inspire cross-disciplinary discussion on how to best track and communicate human activity and scientific progress on a global scale. It has two components: (1) physical exhibits enable the close inspection of high quality reproductions of maps for display at conferences and education centers and (2) the online counterpart (http://scimaps.org) provides links to a selected series of maps and their makers along with detailed explanations of how these maps work.

Places & Spaces is a 10-year effort. Each year, 10 new maps are added, which will result in 100 maps total in 2014. Each iteration of the exhibit attempts to learn from the best examples of visualization design. To accomplish this goal, each iteration compares and contrasts four existing maps with six new maps of science. Themes for the different iterations/years are:

  * 1st Iteration (2005): The Power of Maps
  * 2nd Iteration (2006): The Power of Reference Systems
  * 3rd Iteration (2007): The Power of Forecasts
  * 4th Iteration (2008): Science Maps for Economic Decision Makers
  * 5th Iteration (2009): Science Maps for Science Policy Makers
  * 6th Iteration (2010): Science Maps for Scholars
  * 7th Iteration (2011): Science Maps as Visual Interfaces to Digital Libraries
  * 8th Iteration (2012): Science Maps for Kids
  * 9th Iteration (2013): Science Maps for Daily Science Forecasts
  * 10th Iteration (2014): Telling Lies With Science Maps

Places & Spaces was first shown at the Annual Meeting of the Association of American Geographers in April 2005. Since then, the physical exhibit has been displayed at more than 175 venues in over 15 countries, including eleven in Europe, plus Japan, China, Brazil, Canada, and the United States. A schedule of all display locations can be found at http://scimaps.org/exhibitions

Submission Details

The 7th iteration of the Mapping Science exhibit is devoted to science maps that serve as visual interfaces to digital libraries. These maps might communicate the

  * quality and coverage of data sets,
  * the structure (ontology, taxonomy, classification hierarchy) of data sets,
  * (semantic) linkages between data sets,
  * the evolution of a data set, or
  * access and usage patterns of data sets.

They are intended to support the navigation, management, and utilization of mankind’s scholarly knowledge and to make it more readily available to researchers, educators, industry, policy makers and/or the general public.

We invite maps that show a visual rendering of a dataset together with a legend, textual description, and acknowledgements as required to interpret the map. Science map dimensions can be abstract, geographical, or feature-based, but are typically richer than simple x, y plots. Scientific knowledge can be used to generate a reference system over which other data, e.g., funding opportunities or job openings, are overlaid or be projected onto another reference system, e.g., a map of the world, but must be prominently featured.
See http://scimaps.org/static/docs/all-maps-1-6.pdf for an overview of the 60 maps already featured in the exhibit.

Each initial entry must be submitted by Jan 30th, 2011 and needs to include:

  * Low resolution version of map
  * Title of work
  * Author(s) name, email address, affiliation, mailing address
  * Copyright holder (if different from authors)
  * Description of work: Scholarly needs addressed, data used, data analysis, visualization techniques applied, and main insights gained (100-300 words)
  * References to publications in which the map appeared
  * Links to related projects/works

Entries should be submitted via email to the curators of the exhibit: Katy Börne (katy at indiana.edu) and the exhibit designer Michael J. Stamper (mstamper at indiana.edu) using the email subject header “Mapping Science Entry”.

Please feel free to send any questions you might have regarding the judging process to Katy Börner (katy at indiana.edu). Please keep subject header (as used here).

This call - with additional details -  is also available at http://scimaps.org/call

FROM: A community mental health context TO: Acute EMR/EHR and other ...

or: Will 21st Century health and social care informatics truly begin on Sunday 10 10 10 ?

I've been a nurse AND info tech / informatics enthusiast since 1981. As an advocate of info-tech as a means to improve the quality, effectiveness and safety of health care - I must confess; I feel I have let down those colleagues purely there to 'nurse'. (Don't worry, I am also a realist and post-therapy!).

After 20+ plus years the nearest we (the team and I) got to a system that answered our questions was a small PICK database and a later MS Access database. These focused on referrals and data capture - demographics, problems, interventions (WHO and what) and outcomes. Although the number of data items was not great, no more than 30 the insights we could glean from queries was surprising. People versed with databases, datasets and research readily appreciate how even small datasets, carefully thought out and planned, can answer a diverse range of questions (and generate countless new ones too!).

I noticed in the mid-1980s to mid-1990s the development of customer management software and recognised that clinicians have a need: caseload management.

Even now the requirement of 'X' visits per day, the number of information systems and lack of integration (health - social care) mean that in many instances there is still no readily accessible caseload manager for the individual practitioner. This is an outcome and amid all the talk around 'engagement' (with a 'E').

Perversely, ironically, paradoxically (take your pick) at a time when Lean is (presented and) needed, there are scarce resources to do the things that should now be embedded (routinised) into the life history of the professional. This includes what the professionals do WITH the patients, carers, data, information ...

I speak to student nurses (and other disciplines) regularly as a nurse mentor and sign-off mentor. Their exposure to health care informatics to me is minimal, adhoc, and when it has happened it has signally failed to strike a cord. A very small (and so non-significant*?) sample admittedly.

Informatics remains an academic 'must do'.

Perhaps 21st century informatics only begins on Sunday -

101010

Whatever:
as it stands informatics is a management pursuit.

Slippage is a fact of project management, but words present their own challenge when target driven 'secondary' uses become 'primary'.

*surely not.

[A version of this post first appeared on the Healthcare Information and Management Systems Society HIMSS group on LinkedIn.]

Keeping Research Data Safe (KRDS) Project

From: Neil Beagrie neil at beagrie.com
To: RECORDS-MANAGEMENT-UK at JISCMAIL.AC.UK

I am pleased to announce the release of a new Factsheet from the Keeping Research Data Safe (KRDS) project on the costs and benefits of digital preservation. The Factsheet is available for download as a PDF from http://www.beagrie.com/KRDS_Factsheet_0910.pdf

If you are attending the iPRES 2010 conference in Vienna next week there will be print copies available on the JISC stand.

The A4 four-page factsheet is intended to be suitable for senior managers and others interested in a concise summary of our key findings. It will be relevant to all repositories and institutions holding digital material but of particular interest to anyone responsible for or involved in the long-term management of research data.

The factsheet covers the following major areas:

• Cost issues in digital preservation (what costs most, impact of fixed costs, declining costs over time);
• Benefits from digital preservation (benefits taxonomy, direct benefits, indirect benefits, near-term benefits, long-term benefits);
• Institutional issues (repository models and structures, key cost variables, data collection levels).

We hope the Factsheet will be of value to the digital preservation and research data communities and plan to release a further KRDS publication later this year (a KRDS User Guide).

The Keeping Research Data Safe studies have been funded by JISC and conducted by a partnership of the following institutions: Charles Beagrie Ltd, OCLC Research, the UK Data Archive, the Archaeology Data Service, the University of London Computer Centre, and the universities of Cambridge, King’s College London, Oxford and Southampton.

Neil Beagrie
Charles Beagrie Ltd
Digital Access and Preservation
Management and Research Consultancy

Website: www.beagrie.com
Blog: www.blog.beagrie.com

Report: Open data, democracy and public sector reform

From: Tim Davies tim@practicalparticipation.co.uk
Date: Wed, Sep 8, 2010 at 2:35 AM

Open data, democracy and public sector reform is a report based on a recent MSc dissertation taking a look at the policy and practice of using open government data from data.gov.uk. It's now up as an online document at -
http://practicalparticipation.co.uk/odi/report/

In looking at how open government data is being used in practice it draws out a number of themes, including:

Data is not just for developers
- there is a tendency to focus on machine-readable data for large scale visualisations and mash-ups; but data can be useful to individual citizens or local citizen activists, finding facts within spreadsheets and campaigning for change locally.

Open government data changes the gatekeepers, and the role of civic actors
- now mainstream media, independent citizens, companies and different levels of government are all afforded the possibility of advancing their own interpretations of data. Government, however, retains some (significant?) gate-keeping power by setting the categories and structure in which data is recorded and released. Debates over the meaning of data become more important - and the capacity of local democratic actors to be part of those debates again needs to be developed.

Open government data can support innovation in public services
- predominantly through improving the 'markets' for public service innovation - allowing social and commercial entrepreneurs to work with government data, and preventing exclusive access to data being an anti-competitive advantage for certain firms. However, the research didn't find cases where open government data was successfully facilitating 'citizen led' forms of public service innovation involving local communities discussing and debating how services operated.

A focus on digitizing government underlies much open government data supply and use, and can lead to concerns of politics, power and justice being under-valued in the development of open government data infrastructure
- and we need more articulation and focus on real-live civic use-cases of open government data to inform the development of open data infrastructures.

All comments and feedback on the report welcome - particularly to help shape thinking about what to do with the research next.

http://www.timdavies.org.uk
@timdavies

Co-director of Practical Participation:
http://www.practicalparticipation.co.uk

My source:
ciresearchers at vancouvercommunity.net

ERCIM News 82: Computational Biology - On the Verge of Widespread Impact

Dear ERCIM News Reader

ERCIM News No. 82 has just been published at http://ercim-news.ercim.eu/

Special Theme: "Computational Biology"

- coordinated by: Gunnar Klau, CWI, The Netherlands and Jacques Nicolas, INRIA, France

- featuring a keynote by Dirk J. Evers, Director, Computational Biology, Illumina, Inc.

Next issue: October 2010 - Special Theme: "Cloud Computing Platforms, Software, and Applications"

(see call for articles)

Thank you for your interest in ERCIM News.

Feel free to forward this message to others who might be interested.

Best regards,

Peter Kunz
ERCIM News central editor

---

Of specific interest to me pages 59-60:

Graph Transformation for Consolidation of Creativity Sessions Results
by Peter Dolog
idSpace

ERCIM News "Computational Science/Scientific Computing - Simulation & Modelling for Research and Industry"

Dear ERCIM News Reader,

ERCIM News No. 81 has just been published at http://ercim-news.ercim.eu/

Special Theme:
"Computational Science/Scientific Computing -
Simulation & Modelling for Research and Industry

- coordinated by: Ulrich Trottenberg, Fraunhofer Institute for Algorithms and Scientific Computing (SCAI), Germany, and Han La Poutré, CWI, The Netherlands

- featuring a keynote by Kostas Glinos, European Commission, DG Information Society and Media, Head of GEANT and e- Infrastructure Unit.

Next issue: July 2010

Special Theme: "Computational Biology" (see call for articles)

Thank you for your interest in ERCIM News.
Feel free to forward this message to others who might be interested.

Best regards,
Peter Kunz

<->

[PJ] This issue includes:

p. 44 A Computational Approach to Patient Flow Logistics in Hospitals by Anke Hutzschenreuter, Peter Bosman and Han La Poutré

p.48 Accurate Reconstruction of Single Individual Haplotypes for Personalized Medicine by Filippo Geraci and Marco Pellegrini

p.56 EXTRA Helps SMEs Assess their Knowledge Management Practices by Sanae Saadaoui and Frederic F. Monfils

p.57 The ACM Digital Library at the forefront of Semantic Technology by Stephanie Parker

Comment on Paul Roemer's "EHR market is ripe for the taking by Google, Microsoft, Oracle"

I read with great interest Paul Roemer's post last month -

EHR market is ripe for the taking
by Google, Microsoft, Oracle

I've a lot of respect for the people working at that other sharp end of health. There are times when they are where I would like to be: not the bleeding edge, but the business edge:

Paul is a healthcare strategist and the managing partner of Healthcare IT Strategy, which helps health care providers solve business problems using EHR, workflow improvement, and change management.

Mr Roemer is out there among the corporations, the deals, the the media frenzy and the stock market's take on health care AND health IT. He is addressing specific audiences and over here in the UK we can hear the debate raging. My problem is that working for the NHS all my career I have been and am cocooned. Even though I try to venture out and get involved, this is the very powerful criticism of long-term public sector employees. While far from totally sheltered from economical and political climate change, we are protected from the worst of the business elements. Despite this, seeing the title of Paul's post and his two rules:

Rule No. 1: Content is king. In cable, it is channels such as HBO and Discovery. In healthcare it is data--patient data, effectiveness data, disease data.

Rule No. 2: The cable/telco model values the businesses based on the number of assets (subscribers--you and me). Each body adds somewhere between $5,000 and $10,000 to the valuation model of a Comcast or a Verizon. Downstream, some valuation will be placed on each PHR subscriber.

- two additional rules sprang instantly to mind. ...

Rule 3: Beware low hanging fruit

I posted in April 2009 Data sharing, privacy, health, citizenry.... "Database State" expressing concern that the sanctity of personal data is being eroded bit-by-bit in the mind of the general public by the media and the sheer ubiquity of information and technology. Peaches, plums, pears are delicious when ripe, but as such they need to be handled very carefully. So too does the Personalised health record amid a variety of threats - the worst of which are often internal. In health care the patient data that Paul identifies in his Rule 1 is central, and a key issue is the demarcation of individual and anonymised aggregated data. Hence, Paul quite rightly points to a regulated market. Personal data can be far more valuable in terms of direct marketing and so the temptations for misuse are profound.

In the UK an NHS consultation has addressed the additional uses of patient data. This concerned the research capability programme and provision of a health research support service; with events to present proposals and debate the various issues that include information governance. The report of that consultation is provided below (care of the NHS-HE Connectivity Project list):

http://www.dh.gov.uk/en/Consultations/Responsestoconsultations/DH_109310

Information governance is not fixed, nor should it ever be.

In Paul's rule 1 content is king and content=data - in this case:

• patient data;
• effectiveness data;
• disease data.

This list of data would surely qualify as being 'broad spectrum' in nature. If its circulation is not very tightly controlled it can damage the (care) environment. If not managed effectively across multifold 'borders' - national, regional/state, corporate, systems, organisations, users, testing, interfaces, legislative, public bodies - this data can mutate markedly despite the insistence upon standards. You see although Google, Microsoft and Oracle may take that ripe fruit, as they pick it they come across -

Rule 4: Whenever and wherever picked,
fruit can be tainted

This might include the odd bug, or one or two tainted fruit items perhaps? It could be problems in the form of parts of the EHR that are difficult to incorporate, with questions of shared access and ownership? (If the fruit is indeed pristine, no blemish, no chemicals, no truly-devoted-insect-kisses: what are the overheads - especially those in the form of corporate responsibility?)

Now don't mistake me: I'm also sick to the gums of flannel and people talking jargon. I've seen medics, nurses and nurse managers waving their arms around stressing the importance of their profession, this action followed by that and pointing to the shrouds (my right index finger twitches as I write). But if Google, Microsoft and Oracle believe they can do an Indiana Jones and just shoot to solve the problem because - as Paul suggests - they have the 'numerics' in the cable/telco model, then they need to take care (even if only improvising).

Microsoft, CSC and many other corporations already know of the complexity that reigns (pours in fact!) from their experience in health IT. Paul highlights Google as a new kid in town. Maybe acquisition does obviate the need to learn quickly (let others learn the lessons). But whatever the point of entry: health care remains a cussed business. And the future mix demands (begs!) the integrated addition of social care, but how and to what level?

It is not enough to counter "let's attack this complexity with simplicity." Health and social care are metronomic. They alternate between complex - simple descriptions (one of which is re-organisation). Plus, that metronome may as well be in a closed box:

Schrodinger's. Care to gamble?

Paul's choice of 'downstream' referring to the eventual valuation of PHR subscribers does lessen the mechanistic clang-clang as the subscription counter falls. There is a space for the person - for the humanistic aspects to shine through. Paul's post is also fascinating since such numbers do count and speak volumes (sorry - but they really do). They will not only reach shareholder's ears, but the general public's too helping erode the cherished sanctity of my personal data. So am I saying that some of the giants of corporative intelligence turn and run screaming, arms raised like surprised Martians in alien territory? No.

Maybe, as I have found -

the real low hanging fruit is the m+del.

Is it as ripe and appropriate in this market as it seems?

Or is it past its sell by date?

Time as ever will tell.

Additional links:

NHS data breaches: the 'cogeography' of who and where?

EHR market is ripe for the taking by Google, Microsoft, Oracle

Paul Roemer (twitter)

Image source:
LowHangFruit.com

=============== Paul's Post Follows ==============

December 17th, 2009

by Paul Roemer
The national EHR market is ripe for the taking by a big three like Microsoft, Google and Oracle. Heck, I'll even go so far as to suggest that when the dust settles in about five or seven years, the National Health Information Network will be a regulated combination of a handful of those firms.

As for the other firms offering or planning to offer PHRs, permit me to suggest the following scenario: Let's say I am in charge of Google's somewhat non-existent healthcare line of business. One of my goals would be to have more users of my PHR than any other firm.

Why does this model make sense? Two ways, both of which come from the cable/telco business model.

Rule No. 1: Content is king. In cable, it is channels such as HBO and Discovery. In healthcare it is data--patient data, effectiveness data, disease data.

Rule No. 2: The cable/telco model values the businesses based on the number of assets (subscribers--you and me). Each body adds somewhere between $5,000 and $10,000 to the valuation model of a Comcast or a Verizon. Downstream, some valuation will be placed on each PHR subscriber.

So, back to the example of me running Google's healthcare offering. (If you don't like Google as an example, insert your favorite firm.) If I'm Google, am I troubled by the fact that other firms are building their own solutions? No, because the difficult part of the business model is adding users, adding subscribers. Why not let a bunch of firms do the business development work for me, do the dirty work to get the users, and then just devour those firms? Once I own them, I convert them to my platform. Do I then get some 'ownership' or right to use the data? That would certainly be the business goal.

One million users valued at $5,000 adds $5 billion in valuation. Ten million adds $50 billion. Ten billion is about 2.5 percent of the U.S. market. Do I stop at the border? Of course not.

By the way, while all this is going on, Google, Microsoft, or some other company will also be creating standards and building or buying up EHR firms.

Review: Tackling Health Inequalities - ten years on

A review (Published: 7 May 2009) of developments in tackling health inequalities in England over the last ten years.

This report reviews developments in health inequalities over the last 10 years across government - from the publication of the Acheson report on health inequalities in November 1998 to the announcement of the post-2010 strategic review of health inequalities in November 2008. It covers developments across government on the wider social determinants of health, and the role of the NHS. It provides an assessment of developments against the Acheson report, reviews a range of key data sets covering social, economic, health and environmental indicators, and considers lessons learned and challenges for the future.

Published by Department of Health, UK

c/o Alex Scott-Samuel The Spirit of 1848 list

GIS a look (and learn)!

Starting work yesterday my colleagues and I had a real surprise.

The boss greeted us as positive, jovial, forward thinking and smiling as ever. Something seemed strange, but as we got to our floor we were handed some note paper and briefed - very briefly - about a "local surprise for you hard-working, dedicated clinicians".

So it was off to the desk and on with the log-in. The surprise came with the provision of a series of maps and questions and exercises. The maps just like google maps, multimaps and other variants provided various views and choices of emphasis; street, satellite and several boundaries: our organization's borders the frontiers of partner PCTs, GP practices, social services. After all these decades GIS had arrived on the clinician's desktop.

There was more to follow though. My mug-shot was there in addition to my colleagues (ah... I'd wondered what that recent (online*) form was for). Drag and dropping this beautiful pic on the map the nursing homes pulsed (as if to confirm that I am alive at least clinically) and changed colour. I know something about drill down, aggregation and such like and there they were: caseload parameters: gender, referral source, diagnosis (if known), drug classes, MMSE. I was getting heady as it was possible to look at clients living at home AND/OR residential care. I nearly flipped when there was more available about the referrers and not just the frequency of referrals but the expected frequencies too. There was going to be quite a compare and contrast exercise there post-2011 Census.

On another map I suddenly thought of 'use the bus Ethel': a carer who when she could went everywhere and also used the trains. Active body : Active mind and there it was - the travel logistics and public transport routes across the patch. This was not just GIS on the clinician's desktop it was GIS for the caseload manager. What proportion of my caseload was within 2, 4, 6, 8 and 10 .... miles of base?

Individual insight aside there was team oversight too, a tool to engage in peer group supervision - with (and get this) tools for the 'integrated health and social care team' to investigate local commissioning and how that factors in geographically. Amazing! Yes there are tools to do all this now, but they are not in the hands of the people they should be. Reports are just for managers? What a waste!!

I was just really getting ready to do that piano-playing-finger-flexing thing that you do when you are about to be extraordinarily creative. I mean I had waited for this, public MENTAL health.... my mouth was dry and here it was - GIS nirvana...

Then it happened....

It was time to wake up and get to work.

I won't stop dreaming though....

*I should have recognised it was a dream at this point.

Additional links:

Welcome to the GIS Files

The 2011 Census: Office for National Statistics

Free Our Data

ESRI

Mapinfo

SCIENCES knowledge domain: GIS resources under 'Health & Social Informatics I, G.I.S., Classification, Coding, Data Sets & Grouping'

Image sources: Ordnance Survey

Crossroads http://www.photochart.com/photo_1189_Crossroads.html
Copyright Olga Dunaeva member of Photochart

Data sharing, privacy, health, citizenry.... "Database State"

In February (2009) I ventured that the degree of sensitivity that members of the public ascribe to their personal data is undergoing quite a change. This change is not without its own chaotic dynamic since the change is one of general laissez faire, until an individual finds themselves 'wronged'. Then watch the litigation flow. That initial laissez faire attitude may please some in government as it makes it easier to introduce yet more data farming, gathering, and harvesting legislation and join up what are usually (or should be) disparate data repositories.

I don't read the gutter press and 'lighter' forms of reading, but the exposé in such publications that include - as per the market 'requirement' - very personal data, information and knowledge must have an influence on how the populous view their own data? For health and social care professionals of course they had better continue to hold 'personal data' in the 'highest of esteem', especially in these digitally conjoined times.

Last month The Joseph Rowntree Reform Trust published a report "Database State" calling in question the legality of several public sector databases. The response to these findings is awaited. ...

Meanwhile the website Statebook seeks to parody and yet make a point about the changing data times we live in. Whilst in response to such a critique there are calls for independent oversight, the difficulty lies in ensuring such bodies are not dentally challenged....

Additional links:

http://www.jrrt.org.uk/

http://www.opendemocracy.net/article/email/the-database-state-were-in

Open Rights Group

Hodges' model: Political domain links

Clickstream Data Yields High-Resolution Maps of Science - PLoS ONE

Johan Bollen, Herbert Van de Sompel, Aric Hagberg, Luis Bettencourt, Ryan Chute, Marko A. Rodriguez, Lyudmila Balakireva

Abstract: Background

Intricate maps of science have been created from citation data to visualize the structure of scientific activity. However, most scientific publications are now accessed online. Scholarly web portals record detailed log data at a scale that exceeds the number of all existing citations combined. Such log data is recorded immediately upon publication and keeps track of the sequences of user requests (clickstreams) that are issued by a variety of users across many different domains. Given these advantages of log datasets over citation data, we investigate whether they can produce high-resolution, more current maps of science.

Read more...

Citation: Bollen J, Van de Sompel H, Hagberg A, Bettencourt L, Chute R, et al. (2009) Clickstream Data Yields High-Resolution Maps of Science. PLoS ONE 4(3): e4803. doi:10.1371/journal.pone.0004803

Editor: Alan Ruttenberg, Science Commons, United States of America

Received: June 25, 2008; Accepted: February 6, 2009; Published: March 11, 2009

Additional links:

Nature: news; Web usage data outline map of knowledge

Arthur M. Sackler Colloquium on "Mapping Knowledge Domains"

Open University: Compendium

Hodges' model SCIENCES domain links (Visualization)

My source: Humanist list

Major survey: Training and education for the developers of databases in research and clinical practice

Dear Colleague,

We are writing to invite you to take part in a major survey supported by the Wellcome Trust and the MRC. The survey is part of a programme to increase the capacity of the UK to support clinical research by exploiting the growing quantity of high quality data held in clinical databases.

The survey can be found at http://www.survey.leeds.ac.uk/eprresearch

The project behind the survey has been funded to develop training courses for researchers and information specialists in the health and NHS research community on how best to make effective and secure links between routine clinical databases and research collections.

It follows on from reports from UK CRC, NHS Connecting for Health and other sponsors highlighting the potential for such linkages but which recognised the considerable technical and organisational barriers.

This survey is a first step in our project. We hope you will spare the few minutes taken to complete it. Apologies if you have received multiple copies of this message which has been widely distributed through numerous channels.

Yours Sincerely,

Dr Rick Jones/Mr Mark Hawker
Yorkshire Centre for Health Informatics
University of Leeds
-----------------------
Many thanks for considering this.

Best Wishes,
Mark Hawker
Teaching Development Officer

Leeds Institute of Health Sciences
University of Leeds
Charles Thackrah Building
101 Clarendon Road
Woodhouse
Leeds LS2 9L

My source: The NHS-HE CONNECTIVITY PROJECT - forum

Datasets: an organisational province?

For over twenty years I have been fascinated by data visualization and yet this remains by and large the preserve of scientists, with many social scientists still to identify the potential applications and benefits let alone reel them in. It isn't that social science can't call upon large volumes of data it can and does. It is having the appropriate forms of representation and display that are sympathetic to people actually working in those fields dominated by the humanities. This is not the only difficulty...

Recently on a community informatics list someone asked about their particular project that includes social inclusion within a community and the availability and sources of data - especially datasets. The brief dialogue that ensued set me to wonder about some new (for me) and recurring questions in informatics:

• the definition of informatics;
• the interdisciplinary and transdisciplinary boundaries of informatics disciplines;
• how these disciplines relate to each other;
• the range of datasets in terms of formal (statutory) and informal - community driven datasets;
• what names (if any?) do we give to these datasets and how do they relate to each other?

Although the purposes may be informal - the datasets required are usually formal. Neighbourhood statistics (UK) clearly has an informal air about it, but this is data from the people, collected by the centre, produced by the centre, used by the centre and available (in anonymised form) for everyone. Public health observatories, councils and related agencies are making local data perspectives and resources available as per:

• Health Profiler - NW Public Health Observatory (England)
• Manchester Community Health Information Profiler (mCHIP)
• NHS geo-health profiler

As communities seek to engage in the political process they will need access to data (information and knowledge) to effect analysis - synthesis and change. How groups can find or generate this data is a key consideration. This may prompt and is no doubt prompting the creation of mashups, combining what are usually disparate formal data in new ways. Given the 'politics of data' which includes:

• personal sensitivity
• legal aspects and duties
  
• confidentiality
• security
• anonymisation
• ...
  

- it is easy to see how dataset players tend to be 'organisations' (I am excluding the emerging 3rd sector players here - but this may be a (big) mistake?). How then can community groups generate data(sets) that can help inform and solve their local problems?

Using the (UK) patient and public involvement (PPI) program as an example, a key part of this important initiative is that statutory health care providers (and commissioners) must ensure there are adequate resources to support PPI in and across the community.

What then of community, urban, mobile health and other forms of informatics? There may be a lot of data washing about in the cyber-community. This may however, be out of reach for those who need the political and evidence-based leverage to be gained from parochial* datasets?

Additional links:

NHS Centre for Involvement

K-Net

Free Our Data (UK)

W3C SWEO Community Project: Linking Open Data

Acknowledgement: Community Informatics list, Andrew R. Clark, and Brian Beaton (K-net.ca).

*parochial - used in the local sense.