A techno-spiritual world with agnostic needs

Whatever our own personal beliefs
we live in spiritual times.

Agnosticism
is a frequent and ongoing subject of debate in
the philosophy of religion, science and ideas.

It also features - duly tempered for purpose -
in other fields notably technology.

In the early days of IT and ICT those buying information systems grew tired and wary of being locked-in to particular platforms, with consequent dependency upon vendors. This also put the technology to the fore, with the risk of relegating business requirements to 'out of hours'. While many business relationships did undoubtedly prosper, the market soon recognized the need for standards and the need for technology to be agnostic, increasing freedom and choice in the marketplace.

Among the retinue of central tenets in medicine, health, social care and nursing is the need for unconditional positive regard and a non-judgemental approach. So caring is most definitely not without beliefs and values. In the same way that vendors to companies and academia want to be free and determine their requirements around their business and needs, so too there is a perceived need for the health care 'industry' to be agnostic. Re-framing a bullet list in a 'lost' post elsewhere: ''Increase knowledge innovation and manage technology change' agnostic in a health context becomes:

1. As per the need for evidence-based x, y, z... fully research your status, direction and tools not only before you adopt them, but also while you’re using them*;
2. Don’t get emotionally attached to a particular assessment, planning, intervention (therapy) or evaluation toolset;
3. Continuously research (horizon scan* - look over the fence) at other research possibilities and alternatives;
4. And as Lucas McDonnell make clear: Don’t build yourself into a corner*.

*Of course, that last point is hypercritical - since there are at least four corners!

This is where Hodges' model comes into play, (not quite with underpants on the outside, but certainly with utility belt firmly in-situ).

Hodges' model - as a model to support and integrate care - is agnostic in the following ways:

DISCIPLINE: unless its origins prejudices its case, Hodges' model can be applied by any and all disciplines. This is crucial in times when multidisciplinary and even transdisciplinary team work is needed.
THERAPEUTICS: whether physical, social or biopsychosocial - Hodges' model is agnostic regards particular therapy interventions. It is not married to gene therapy, cognitive therapy, primary nursing, family therapy, gestalt therapy.
PHILOSOPHY: 'care- nursing- ward- philosophy' is probably a much misused term, but once again Hodges model is philosophically neutral - unless it is deemed that its generality - pantological aspirations - is itself a philosophical stance?
SUBJECT: in being person-centered the model is agnostic in respect of the individual using the model or who happens to be the focus of the model. This is quite critical at present with the engagement of patients in education, self-care and individual budgets in cases of long-term medical conditions.
AUTHORITY: Although disciplines with their professional legacies and politics can and do (justifiably) lay claim to authority and legitimacy Hodges' model can negotiate this divide.
SOCIO-TECHNICAL: this form of agnosticism for Hodges' model is not given the credence it should be afforded. Being context sensitive and situated the model can perform a definitional volte face appealing to a socially or technically oriented user-base, or both.
CULTURAL: Finally, it is essential that our tools are not 'tainted' from the perspective of a particular community or ethnic group. Apart from the structure of the model with its historical (mythic) iconographic associations, the model is open and not directly allied to any specific ethnic group, set of cultural or religious beliefs. Ideologically AND practically then the model provides a neutral ground upon which values and beliefs can be shared.

Additional links:

Becoming a Technology Agnostic, by davidleeking (My primary source through twitter)

Technology-agnostic approach to Service Oriented Architecture: back to the essence of SOA?

Oh dear! I forgot to ask the nurse (doctor)....

Hodges' model introduction II:

The view from the other side of the fence

Have you ever been to see the doctor or nurse and shortly after leaving the surgery, or clinic you've remembered something? These days - very sadly - many people go to the doctor to seek help for their memory, but for others this is a fact of that frustrating mix of vital questions and issues to raise amid recognition that the time of nurses and doctors is very precious.

This post introduces a framework that can help people to prepare for a consultation and maintain a record of just where their care situation is up to. The framework in question is called Hodges' model. It is named after a retired Senior Lecturer - Mr Brian E. Hodges who lives in Sheffield, England. Brian Hodges created the model to help nurses and community staff ensure the care they deliver is holistic. Holistic in this sense means covering all the essential aspects that contribute to health and well-being, so that includes physical, emotional and mental and even spiritual health.

If you need to go into hospital you do not want to be treated like a faulty machine. Of course, in an emergency those machine-like things we do like heart beat, respiration, temperature regulation are of central importance. Should you ever need emotional care for a severe mental health problem then you would also expect that your physical needs are taken fully into account. Amidst these aspects of care the health care team must also pay attention to culture, equality, diversity and access to services.

Although the model was developed in the 1980s its relevance and potential increases in all the time. This is because of the following:

* health care and medicine is increasingly complex;
* people may have long term and multiple chronic problems;
* education is essential to 21st century care management - as people are expected to 'self-care';
- people may also be managing their own care budget and so need information and 360 vision;
* policy makers stress the need for 'patient choice';
* high quality health and social care is very expensive;
* as people live longer and may have several relationships spanning cultures and belief systems the notion of a health career is the career.

Hodges' model builds on two basic facts of life (and death):

From your point of view and that of any health or social care professional your health is about you - an INDIVIDUAL.

Your health affects other people - most significantly your family. Rather than you being ill, you may of course be a carer having to look after a relative. Also affected are work colleagues, the wider community through to whole GROUPS of people.

We now talk about medicine, well-being, and health in terms of global health since the population of Earth is so tightly linked and interdependent.

In order to maintain health there is a need to diagnose and intervene - or assess, plan, intervene and evaluate. Here the model can also take into account ethnic and transcultural aspects of health. Diagnosis and intervention in Western medicine is frequently MECHANISTIC and this is balanced (remember that HOLISTIC part of the model) by the need for HUMANISTIC interventions. This is what we mean by 'bedside manner' and people being 'caring'. The ability to empathise with others and develop a therapeutic rapport after physical and emotional trauma is a great gift - that while often innate can also be learned and honed.

Once Brian Hodges had identified the following dimensions of care:

INDIVIDUAL - GROUP and HUMANISTIC - MECHANISTIC

he considered the types of knowledge that health and social care workers need to not only do their job safely, effeciently and effectively, but also help people to help themselves. This led to the FOUR CARE or KNOWLEDGE DOMAINS, each covers a key aspect of care:

SCIENCES: e.g. anatomy, physiology,healing process, drugs, risk, diagnosis...

INTRAPERSONAL: e.g. mood, thinking, beliefs, communication, education, learning, coping...

SOCIOLOGY: e.g. relationships, roles, meaning, groups, resources

POLITICAL: e.g. choice, consent, autonomy, policy, legislation, finances

Students - young and mature - who decide to study health and social care can use the model to help them reflect on critical events in their training and learning. The model can help them gain some insights in completing essays and case studies integrating knowledge and experience. When you think about it: if it essential that care professionals are able to have an effective dialogue with patients and the public then they should also be capable of having an effective 'dialogue' with themselves.

Members of the public can also be taught the model to help them appreciate the factors involved in their care programs, solutions and ongoing management if required. Hopefully this brief explanation sheds some light on the model's mantra:

Hodges' Health Career (Care Domains) Model: h2cm
h2cm: help 2C more - help 2 listen - help 2 care

Hodges' model is no universal panacea it is just a tool; but while services stress the need for person-centered, integrated, value-for-money, high quality services ... built on respect, dignity, trust and choice - YOUR health career matters.

h2cm can help pull the many threads together....

<>

On the website's homepage there are four introductions based upon the care domains. Each one addresses a particular audience: learners (SCIENCES); patient (INTRAPERSONAL); carer (SOCIOLOGY) and policy maker / manager (POLITICAL). They all need updating (re-writing?!).

If you would like to contribute to this exercise please contact me through twitter or at h2cmng at yahoo.co.uk

The Science Collaboration Framework (SCF)

My attention was drawn today (by Robert Douglas) to The Science Collaboration Framework (SCF) that is based on Drupal.

Here are some details from the SCF website:

About:

Interdisciplinary research programs at Harvard and elsewhere naturally tend to be distributed geographically, across campuses and departments. Effective collaboration for these programs requires the ability to bridge distance, which in turn implies digital collaboration, and therefore abilities to publish and discuss on-line content such as articles, news, and perspectives; to provide semantic context to on-line content for more powerful interactions within multiple sub-disciplines and to integrate as well as distinguish the individual contributions of many scientific workers.

The Scientific Collaboration Framework (SCF) is reusable software that can be used to develop web-based, collaborative, scientific communities. The framework is designed to support interdisciplinary scientists in publishing, annotating, sharing and discussing content such as articles, perspectives, interviews and news items, as well as assert personal biographies and research interests – the basics of any online community. These web materials can then be linked to external, heterogeneous knowledge repositories of life science resources such as genes, antibodies, cell-lines or model organisms. SCF, thus supports structured “Web 2.0” style community discourse amongst researchers, makes various data resources available to the collaborating scientist and captures the semantics of the relationship among the discourse and resources.

Our framework is based on Drupal – a popular content management system that is highly extensible and has a thriving ecosystem of contributed modules. SCF includes new modules for managing publications, interviews, member information, news items, announcements, and biological entities (e.g., genes). The framework is freely available as a Drupal distribution; however the modules can be used a la carte as well.

SCF is a project of the Initiative in Innovative Computing at Harvard University in collaboration with the Harvard Stem Cell Institute. The first instance of SCF is being adopted by StemBook (stembook.org) – a comprehensive, open-access collection of original, peer-reviewed chapters covering topics related to Stem Cell Biology. A joint project with Michael J Fox Foundation (MJFF) to develop a community site for Parkinson's researchers is under development. SCF is also being evaluated by several other communities.

Publications:
Sudeshna Das, Tom Green, Louis Weitzman, Alister Lewis-Bowen & Tim Clark. Linked Data in a Scientific Collaboration Framework. 17th International World Wide Web Conference (WWW2008), Beijing, China.

I am particularly interested in SCF since as noted above "the modules can be used a la carte as well." The potential of putting this together with the Drupal Education distribution is really exciting. I still believe that SVG (or similar) has a role to play for my plans. In the meantime though back to Drupal version 6.9....

Additional links:

Alzforum

Patient or Customer?: Caring under a panoply of words

Through twitter I came across a blog post 'Should patients be treated as customers' at Kevin MD.

I posted a comment and this post develops the thoughts there....

There is a panoply of words we apply in the various contexts covered by health and social care. Those associated with patient are subject to ongoing debate...

I use the word 'panoply' on purpose because individuals and services can hide behind words - or jargon - as we all do, using words as a defensive shield.

Panoply struck me with its multiple meanings. As definitions reveal the word suggests an abundance of something - 'flags'! Panoply also suggests something covered. A need to protect as per the meaning applied to armour.

A friend - a retired nurse - recently had an in-patient experience that proved rather shocking in terms of the past 3-4 decades of nursing theory and practice. During this time of course the nursing literature has espoused the need for individualised nursing care. All that effort according to my friend's particular patient experience or customer journey suggest that nursing has not moved on.

Perhaps there is a perpetual policy irony (PPI?!) that sets wiser heads rocking to-and-fro: the more something is in vogue - written and talked (flagged) about - the less it really applies in reality?

Which brings me back to KevinMD's post. There is and needs to be a tension between patients as passive players in the sense of them being (allowed to be) patients; and patients as members of the public with experience to translate into service improvement and change. Patients are also citizens - taxpayers and many of whom have a desire to push up the quality and accessibility of health and social care services.

The first stumbling steps of PROMS (patient reported outcome measures) is now under way to gauge quality and outcomes.

'Patients' will tend to be viewed as 'customers' when the systems used to collect their 'satisfaction ratings' of the 'patient experience' are adapted from existing CRM applications: re-engineered - tinkered and tailored - to suit another industrial commercial niche or market sector.

This is not to be cynical, it is being realistic about the commercial realities in which health and social care is practised.

There's a dated concept in nursing theory (and medicine) patiency. When does patiency begin? When does it end? Perhaps it is time to revisit this from an informational perspective?

If the public is engaged as per the Patient Public Initiative then (idealistically) they can 'shop around' before they extend their health career reach to the mobile paramedics (strategically sited around the community) and possibly on through to A&E. Then the public has acted politically and socially prior to their need to engage in the actual care processes themselves.

<>

Here's the post on the 'public' and the sanctity of records which includes some additional links...
(Confidential) Letter to self - and you, and you, and you... ?

http://hodges-model.blogspot.com/2009/02/confidential-letter-to-self-and-you-and.html

Reprise: Hodges' model introduction

Developed in the UK during the early 1980s, Hodges’ model (h2cm) is a conceptual framework that is person-centered and situation based. In structure it combines two axes to create four care (knowledge) domains (as illustrated on the website). Academics and practitioners in many fields create models that help support theory and practice (Wilber, 2000). Models act as a memory jogger and guide. In health care generic models can encourage holistic practice directing the user to consider the patient as a whole person and not merely as a diagnosis derived from physical investigations? Exposure of h2cm is limited to a small (yet growing) cadre of practitioners; several published articles (Hinchcliffe, 1989; Adams, 1987; please see the bibliography on this blog). In addition to a website (Jones, 1998) there is a blog and an audio presentation both first published in 2006.

The best way to explain h2cm is to review the questions Hodges originally posed....

To begin, who are the recipients of care?

Well, first and foremost individuals of all ages, races and creed, but also groups of people, families, communities and populations. In this way the potential scope of Hodges' model is personal and global.

Then Brian Hodges asked: what types of activities - tasks, duties, and treatments - do nurses carry out?

They must always act professionally, but frequently according to strict rules and policies, their actions often dictated by specific treatments including drugs, investigations, and minor surgery. Users who adopt Hodges' model find that the model transcends the purely task-based perspectives of care and intervention. Hodges' model also encompasses beliefs, attitudes, motivation, self-awareness, and values. Nurses do many things by routine according to precise procedures, the stereotypical matron - machine-like efficiency? If these are classed as mechanistic, they contrast with times when healthcare workers give of themselves to reassure, comfort, develop rapport and engage therapeutically. This is opposite to mechanistic tasks and is described as humanistic; what the public usually think of as the caring nurse. In use this framework prompts the user to consider four major subject headings or care domains of knowledge. Namely, what knowledge is needed to care for individuals - groups and undertake humanistic - mechanistic activities?

Through these questions Hodges’ derived the model depicted on the website.

Initial study of h2cm on the website has related Hodges’ model to the multicontextual nature of health, informatics, consilience (Wilson, 1998), interdisciplinarity, and visualization. H2cm says nothing about the study of knowledge, but a great deal about the nature of knowledge is implied in the models structure and knowledge domains. This prompted two web pages devoted to the structural and theoretical assumptions of h2cm. Although the axes of h2cm are dichotomous, they also represent continua. This duality is important as for example an individual’s mental health status is situated on a continuum spanning excellent to extremely unwell. There are various states in-between affected by an individual’s beliefs, response to stress, coping strategies, epigenetic and other influences. H2cm was created to meet four educational objectives:

1. To produce a curriculum development tool.
2. Help ensure holistic assessment and evaluation.
3. To support reflective practice.
4. To reduce the theory-practice gap.

Since h2cm’s formulation these objectives have grown in relevance. The 1980s may seem remote, but these problems are far from archaic as expansion of points 1-4 reveals. Education is now preparation for life-long learning. Curricula are under constant pressure. Despite decades of policy declarations, truly holistic care (combining physical, mental and pastoral care) remains elusive. The concept and practice of reflection swings like a metronome, one second seemingly de rigour, the next moment the subject of web based polls. H2cm can be used in interviews, outlining discussion and actions to pursue, an agenda - agreed and shared at the end of a session. The model is equally at home on paper, blackboard, flipchart and interactive whiteboard. Finally, technology is often seen as a way to make knowledge available to all; the means to bridge theory-practice gap through activities such as e-learning, governance and knowledge management. The digital divide cannot be bridged by idealism alone.

The axes within h2cm create a cognitive space; a third axis projecting through the page can represent history; be that an educational, health or other ‘career’. It is ironic, that an act of partition can simultaneously represent reductionism and holism. Reductionism has a pivotal role to play, which h2cm acknowledges in the sciences domain. What h2cm can do is prompt the user that there are three other pages to reflect and write upon.

Should you be interested I can f/w two papers on Hodges' model published 2008 and 2009: please contact me at h2cmng at yahoo.co.uk. Much of the material on the website is in need of update, or removal - if you would like to help please let me know. The time for partnership in spreading Hodges' model is now....

REFERENCES:

Adams, T. (1987). Dementia is a Family Affair. Community Outlook, Feb, pp. 7-8.Hodges E. Brian (1989). Hodges health Career Model, IN, Hinchcliffe, S.M. (Ed.). Nursing Practice and Health Care, [1st Edition only], London, Edward Arnold.
Wilber, K. (2000). Integral Psychology: Consciousness, Spirit, Psychology, Therapy. Shambhala Publications.
Wilson, E.O. (1998). Consilience: The Unity of Knowledge, Abacus.

See this blog's bibliography for references and the blog labels (tags) for additional resources.

The 'Health Career' - records and symmetry breaking: Admin vs Clinical needs?

In my nursing career to date and over the past 18 months I've been involved in some complex clinical cases involving profound physical, mental and social aspects of care.

Such complexity given the rise of long-term chronic medical conditions, multiple diagnoses and an ageing population is not uncommon. What is more remarkable is simultaneously reading on the records management and other informatics mail lists questions regarding the retention of specific types records within health care, social care, schools and the human resource departments of other organisational settings.

From the perspective of Hodges' model and the notion of a health career you wonder about the efficiency of administration - and legislation - versus the potential future utility of 'archived' clinical records. Clinical records from 20 years ago and less have frequently been destroyed and you are left to consider the possible relevance of that information to the care delivered in the here and now? This is particularly acute for reasons of the following:

• the increase in dementia and an individual's capacity to account for their past care;
• the increase in fractured family histories;
• the likelihood of significant past care episodes and medical events relevant to future episodes: 1) cancers; 2) psychological problems; 3) negative life experiences;
• the use of the medical record (health career) to inform someone's life story (and not just as a 'therapeutic intervention').

Is there an argument for a re-appraisal of retention schedules? Factors to consider might include:

• the shift to digital collection, storage, archiving and ever improving retrieval technologies;
• the use of semantic search - and intelligent (context - discipline-based) applications;
• the ability of the individual to decide on the longevity of their records;
• the advice of specific patient groups - Alzheimer's; Multiple Sclerosis; HIV / Aids...;
• the transition of an individual record to an item of historical interest;
• the ongoing emphasis upon collaborative care, self-care and personal health records;
• Archiving - shift from paper-centric to inclusion of digital media?

What do you think?

Additional links:

DoH Records Management - Information Policy

DoH (2006) Records management: NHS code of practice

Personal Health Record

Good things come to those who wait...:

Being interested in astronomy I've used this theme in quite a few blog posts. Hodges' model cannot only act as a repository for a constellation of ideas - the model is up there in the constellations - in several forms including - The Southern Cross, Crux.

I thought about the Milky Way, but was disappointed about the scope for finding Hodges' model there on two counts:

1. we (and more especially our children) can hardly see the Milky Way such is the light pollution;
2. the Milky Way does not reflect Hodges' model - which axis would it be?

Then I realised:
One day, there will be two bands of star dust across the night sky (c/o APOD):

Milky Way Galaxy Doomed: Collision with Andromeda Pending
Illustration Credit: NASA, ESA, Z. Levay and R. van der Marel (STScI), and A. Mellinger

It just goes to show you... good things come to those who wait...

 
Image source: The Southern Cross  

Additional links: International Year of Astronomy Kepler Star Wheel

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. Local statistics (UK) 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 Profiles

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:

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.

Source: by Peter Jones, Welcome to the QUAD 2009

One mind, many minds - ONE PLANET. One need, many needs - ONE PLANET: what price stability?

Hodges' model
a gyro for the
Mind and Planet

One mind or many more than ever we need to think OUT of the box and IN it.

Gyroscopes.org
The Incredible Genius Of Eric Laithwaite

Images - source: Photobucket
Thanks to David McKendrick for the inspiration.

Book chapter: Substance Misuse and Mental Health

With the chapter on socio-technical structures within Hodges' model due to appear very soon there is news of an exciting further project - a different publisher with a more purely clinical and social care focus.

Between now and 1 May I have accepted an invitation to produce a chapter addressing the holistic aspects of substance misuse and mental health. More to follow and a deadline to work to ....

Millennium Development Goals - Progress and Prospects c/o The Communication Initiative Network

Here c/o The Communication Initiative Network is Drum Beat 479 which addresses progress and prospects of the Millennium Development Goals (MDGs).

Publication Date: February 9, 2009

This issue of the Drum Beat explores communication-centred thinking and action designed to address the Millennium Development Goals (MDGs) - 8 goals set in 2000 to be achieved by 2015 that respond to what some consider to be the world's main development challenges. In 2005 and 2006, The Communication Initiative (The CI) published a series of Drum Beat issues focused on communication intersections with each of the MDGs, as well as a "year in review" issue at the end of each series. As we enter 2009, having passed the halfway point in the quest to accomplish the Goals, the selections below examine progress by highlighting just a sliver of the statistics, interventions, and strategies drawing on communication to make a real impact.

1st KT-EQUAL Workshop: Enabling people with dementia and their carers through the use of new technologies

As you will know the mantle of SPARC is being passed to KT-EQUAL. This new EPSRC initiative is determined to ensure that older people, disabled people and society benefit from the nation's investment in research by making sure that research knowledge is transferred and used by those many stakeholders with an interest in the wellbeing and quality of life of older and disabled people. It will take a while for KT-EQUAL to be fully up-and-running, as staff have to be recruited and resources aligned to its special mission, however we do plan to run plenty of workshops in the months to come.

I am pleased to tell you that the first workshop, convened by Professor Gail Mountain, Enabling people with dementia and their carers through the use of new technologies will take place on 16th March, at Reading Town Hall (very near the railway station).

Dementia is an area of significant policy concern, demonstrated through the forthcoming publication of the National Dementia Strategy. This will identify targets for early diagnosis and improved interventions to promote better care. This workshop will provide participants with illustrations of best practice from existing and current research with a focus upon use of technologies which can promote enablement and quality of life for people living with dementia and their carers.

The workshop is free but places are limited, so please register your interest as soon as possible via the SPARC website www.sparc.ac.uk and follow the links.

Stop Press there are two new interviews with researchers available on the SPARC website: Dr Meredith Shafto talks about her research into those annoying tip of the tongue lapses which seem to become more familiar with advancing years, and Dr Maria Wolters discusses her research into improving computerised speech used by automated call centres, lifts, sat navs and other devices. These can be found on the audio interview panel on the right hand side of the home page. There are now 20 interviews available about a broad range of SPARC projects. Also, the SPARC web site has executive summaries of most of these projects.

Best wishes

Peter Lansley

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Professor Peter Lansley, BSc, MSc, PhD, MCIOB, FCOT
Director, SPARC - Strategic Promotion of Ageing Research Capacity
School of Construction Management and Engineering, URS Building,
University of Reading, Whiteknights, PO Box 219, Reading, RG6 6AW, UK
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

"Digitize This Book!" book review: follow-up

Following the post from last Tuesday January 27 of a review of Gary Hall's Digitize This Book! the dialogue below took place and focuses upon accessibility.

From: Claude Almansi
To: Peter Jones

Hi Peter,

Thanks for the link (on xmca list) to your very detailed review of Gary Hall's book. As you are also an advocate of computer accessibility, may I ask if Hall's text mentions the accessibility of digitized works?

For instance the works offered by Google Books and The European Digital Library texts, with the exception of public domain ones, are presented as images of text that are mute to the screen readers used by blind people. So are all newspapers archives using Olive ActivePaper software.

This use of text images - apparently motivated by a "wish to protect copyright - is not only a barrier to blind people: it makes such "digitized" works very clumsy to use for research, and for reading on a portable device with a small screen. It also means that they are difficult to find with a search engine*. And the paradox is that these applications do use a plain text version, but hide it, only offering these images of text.

I wrote about this problem in:

http://innovateblog.wordpress.com/2009/01/22/unhide-that-hidden-text-please/

where I quote Gabriele Ghirlanda's description of how he did get his screen reader to read the content of such a "text image" article in an ActivePaper powered archive:

"With a screenshot, the image definition was too low for ABBYY FineReader 8.0 Professional Edition [optical character recognition software] to extract a meaningful text. But by chance, I noticed that the article presented is made of several blocs of images, for the title and for each column. Right-click, copy image, paste in OpenOffice; export as PDF; then I put the PDF through Abbyy Fine Reader.
[...]
For a sighted person, it is no problem to create a document of good quality for each article, keeping it in image format, without having to go through OpenOffice and/or pdf."

Rather frustrating to think that this archive is powered by a hidden plain text...

Best

Claude Almansi

On 1/29/09, peter jones <h2cmng @ yahoo.co.uk> wrote:

> Hi Claude,
>Thanks very much for these points. I've checked and 'accessibility' does not feature in the index.

(Claude Almansi) Interesting. When the archives of the Journal de Genève were announced last december, I first objected on the mailing list of the Swiss Internet User Group (SIUG) to the claim that they were "in free access" , in spite of their "text image" presentation made worse by scripts preventing full download (etc: see my post on the Innovate blog). Now SIUG is very committed to accessibility. During the revision of the Swiss copyright law, we lobbied for maintaining the exceptions to the interdiction of circumventing DRM, stressing that these exceptions were fundamental for blind people using screen readers [1].

Nevertheless, the first reactions were on the line of don't rock the boat: no other Swiss paper offers non-paying access to their archives yet, and if we are too critical, even this might be withdrawn. So I first submitted the post for the Innovate blog to Norbert Bollow, SIUG's chairman, and he OK'd it, as I had put the issue in a wider context.

Sure, a digitized text image is better than no digitized text at all. Yet real text is so much better for everybody [2].

Peter Jones) As you may have noticed I have HCI accessibility resources on links I.

(Claude Almansi) Yes, I did: that's why I sent you the question about accessibility in Gary Hall's book.

[1] For instance, I recorded an interview on DRM and assistive tech with Luca Mascaro, a computer accessibility specialist, posted it in:

http://noimedia.podspot.de/post/luca-mascaro-drm-e-tecnologie-assistive/

added the transcript in

http://noimedia.wikispaces.com/tecnologia_assistiva_e_DRM

and the English translation in

http://noimedia.wikispaces.com/assistive_tech_and_DRM

- then Norbert Bollow, SIUG's chairman, translated in German (see

http://siug.ch/URG/interview-mascaro-2007-05-09.html

and sent it to the members of the Judicial Commission, all within a few hours: because the content producers (IFPI, etc) had announced that they would exert the utmost pressures to have these exceptions to the interdiction of circumventing DRM removed from the law. Other groups lobbied for the exceptions from different view points (consumers' rights, open standards, culture) and in the end the exceptions were maintained.

[2] An interesting example of good digitizing:

"e-codices - Virtual Maniscript Library of Switzerland <http://www.e-codices.unifr.ch/en>.

They too give text images, but then how many sighted people can decipher a medieval or Renaissance MS, apart from scholars? So this is compensated by the fact you can switch at any time from the image view of a MS to its text description, written in simple language, with interesting details linked to the images various pages of the MS. Only issue: the descriptions are not translated in all 4 languages of the site - but then that's Switzerland :D

Entirely done with Open Source software: see
http://www.e-codices.unifr.ch/en/info/webapplication

Hi Peter,

About digitizing books: the forward is the second message of a discussion, with the first one under it, on the A2K [=Access to Knowledge] mailing list. The article amply quoted in the first message is "Google & the Future of Books" by Robert Darnton, New York Review of Books, dated Feb 12, 2009 but already on line at - <http://www.nybooks.com/articles/22281>. Archived at -
<http://www.webcitation.org/5e6Qtv7Xs> in case the NYRB removes stuff from their site after a while.

BTW, the A2K list members send very good info about copyright, copyleft and culture. Pity the list archive doesn't have an RSS feed or a search engine of its own, but as the archive is public, you can find relevant messages in a search engine by adding A2K to the search words.

Best,
Claude

To: Peter Jones, Claude Almansi
From: Gary Hall
Subject: Re: Review of Digitize This Book!
Date: 29 January 2009 20:39:39

Dear Claude, and Peter,

Actually, this is an area that Steve Green, who set up the CSeARCH archive with me, and who is also one of the co-founders of the Culture Machine journal I co-edit, is very interested in. One of his issues with the new design of Culture Machine - we recently moved over to Open Journal Systems as part of Open Humanites Press (http://www.openhumanitiespress.org), which is something else I'm also involved in - is that the text size, even at the highest option, is actually quick small, which might make it difficult to read for some people with poor vision. Also the fonts and colours can't be selected. Steve and a colleague are currently giving the new version of Culture Machine an accessibility audit for us. I'll let you know the results when I have them.

In the meantime, I've also raised the issue with my colleagues at Open Humanities Press, just to make certain we address it there, especially with regard to the open access book publishing strand we are in the process of establishing.

As far as Digitize This Book! is concerned, I'm afraid I don't mention accessibility in terms of the screen readers used by blind people there, no. I did have plans to include a chapter critiquing the notion, frequently heard within open access debates, that making academic research available online OA means they are available for everywhere, for everyone, for ever. My intention was to do so partly in terms of political economy (not every can afford access); partly in terms of language (what happens about translation issues and costs); and partly in terms of the geopolitics of academic publishing (whereby there are a few nations at the centre of this world who are exporting, and in effect universalising, their knowledge, a whole host of other nations outside the centre of the academic and publishing networks who may be able to import ‘universal’ theory, but who don’t have enough opportunities to publish, export or even develop their own ‘universal’ theory to rival those of Foucault, Derrida, Deleuze, Mouffe, Agamben, Badiou, Butler, Latour, Negri, Rancière et al). However, I must confess that in the little work I'd done on this chapter, I hadn't addressed the issue you raise regarding the use of text images.

(I'm aware that Google Books and The European Digital Library use images of texts, but I hadn't made the connection to the screen readers you mention.)

In the end the chapter I had planned didn't make it into Digitize This Book!, for reasons of time and space. But I may include it in the book I'm working on at the moment. If I do I'll certainly endeavour to address the issue there.

Thanks for bringing it to my attention. I'm very grateful.

My best to you both,
Gary

13 Feb (update) Additional links (c/o Deborah Elizabeth Finn - Information Systems Forum):

http://www.tacticaltech.org

(Confidential) Letter to self - and you, and you, and you... ?

Hi PJ,

I'm wondering if you can help with something that's been troubling me a bit...?

You know that as a nurse (and future patient!) confidentiality (which increasingly relies on the security of ICT systems) is of course vital to your profession and professionalism both in theory and practice. Quite rightly take this for granted and you could be in serious trouble, with your job in jeopardy.

I’ve been wondering about the way that Jo-public views their personal health information and clinical record and how these views have evolved over the past decade and how they will change in the next 5, 10 .... years? A change that will have major implications for definitions and the meanings of record, access, sharing, personalised, and professional. This is also one of those slippery slopes; since it will be very difficult to get that emerging genie back in the bottle. The clinical record even with new consent models will increasingly make it a currency for exchange within a *wider* community given the rise of electronic and personal health records, Health 2.0, 3.0…. By 'community' I mean one not just restricted to health and social care organizations, but one that could be much more extensive.

There are a lot of tools out there in the public domain that enable the creation of new portals, services to which other agencies can add value. This is not a problem: 'value-added services' is one definition of progress.

The problem is the pace of change and the extent.

Health has always been commodified. Recently on the news I heard that a kidney is probably worth 1.5 million dollars (https://www.newkerala.com).

Perhaps for the ‘professions’ given the sanctity of clinical records this is the ultimate trip?

Any thoughts or directions to references…?

Many thanks and best regards,

'Your other half'
P.S. People had better be careful when they mix personalised and professional - that's quite a potent concoction. I wonder if you can sell it?

Additional links / reading:

Viewpoint Paper
A Research Agenda for Personal Health Records (PHRs)
David C. Kaelber, Ashish K. Jha, Douglas Johnston, Blackford Middleton and David W. Bates
Journal of the American Medical Informatics Association, Volume 15, Issue 6, November-December 2008, Pages 729-736.
Abstract:

Patients, policymakers, providers, payers, employers, and others have increasing interest in using personal health records (PHRs) to improve healthcare costs, quality, and efficiency. While organizations now invest millions of dollars in PHRs, the best PHR architectures, value propositions, and descriptions are not universally agreed upon. Despite widespread interest and activity, little PHR research has been done to date, and targeted research investment in PHRs appears inadequate. The authors reviewed the existing PHR specific literature (100 articles) and divided the articles into seven categories, of which four in particular— evaluation of PHR functions, adoption and attitudes of healthcare providers and patients towards PHRs, PHR related privacy and security, and PHR architecture—present important research opportunities. We also briefly discuss other research related to PHRs, PHR research funding sources, and PHR business models. We believe that additional PHR research can increase the likelihood that future PHR system deployments will beneficially impact healthcare costs, quality, and efficiency.

From the above:

Markle Foundation http://www.markle.org

Robert Wood Johnson Foundation http://www.rwjf.org

Considering something ‘ELSE’: Ethical, legal and socio-economic factors in medical imaging and medical informaticsPenny Duquenoy, Carlisle George, Anthony Solomonides
Computer Methods and Programs in Biomedicine, Volume 92, Issue 3, December 2008, Pages 227-237.
Abstract:
The focus on the use of existing and new technologies to facilitate advances in medical imaging and medical informatics (MIMI) is often directed to the technical capabilities and possibilities that these technologies bring. The technologies, though, in acting as a mediating agent alter the dynamics and context of information delivery in subtle ways. While these changes bring benefits in more efficient information transfer and offer the potential of better healthcare, they also disrupt traditional processes and practices which have been formulated for a different setting. The governance processes that underpin core ethical principles, such as patient confidentiality and informed consent, may no longer be appropriate in a new technological context. Therefore, in addition to discussing new methodologies, techniques and applications, there is need for a discussion of ethical, legal and socio-economic (ELSE) issues surrounding the use and application of technologies in MIMI. Consideration of these issues is especially important for the area of medical informatics which after all exists to support patients, healthcare practitioners and inform science. This paper brings to light some important ethical, legal and socio-economic issues related to MIMI with the aim of furthering an interdisciplinary approach to the increasing use of Information and Communication Technologies (ICT) in healthcare.
 
Situation-Based Access Control: Privacy management via modeling of patient data access scenariosMor Peleg, Dizza Beimel, Dov Dori, Yaron Denekamp
Journal of Biomedical Informatics, Volume 41, Issue 6, December 2008, Pages 1028-1040.
Abstract:
Access control is a central problem in privacy management. A common practice in controlling access to sensitive data, such as electronic health records (EHRs), is Role-Based Access Control (RBAC). RBAC is limited as it does not account for the circumstances under which access to sensitive data is requested. Following a qualitative study that elicited access scenarios, we used Object-Process Methodology to structure the scenarios and conceive a Situation-Based Access Control (SitBAC) model. SitBAC is a conceptual model, which defines scenarios where patient’s data access is permitted or denied. The main concept underlying this model is the Situation Schema, which is a pattern consisting of the entities Data-Requestor, Patient, EHR, Access Task, Legal-Authorization, and Response, along with their properties and relations. The various data access scenarios are expressed via Situation Instances. While we focus on the medical domain, the model is generic and can be adapted to other domains.

Picker Inst. http://www.pickereurope.org/