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.