Rare Disease Day 2012 - reflections using h2cm

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Is it ironic that ‘I’, this ‘self’ becomes an expert of my condition by virtue of it being rare? Is it also rare because so few must live with the emotional consequences? Yes, personalised medicine holds great promise, but please don't forget - me: this person : I don't want to be left here.	Being that expert I may even know the ICD-10 … codes for my condition. I know the symptoms very well. I know the 'current' evidence and may also be able to tell you about the gaps in the knowledge base.  My family physician learns with me. Supported by policy and united as a group what might citizen science deliver?
Your carer may be the expert because for you this rare disease means you cannot readily self-advocate. We all need to know we are not alone. If there is a role for social media here it is: "Rare but Strong Together"	For those people with rare diseases we have to help them unify in order to shout, wave and raise awareness. After all: WE seek global health don't we? Being rare is there investment in funding for research? Must there be a market first to bring forth drugs / treatments? We know about individual motivation, whither the corporate drive - social responsibility.

My prompt and thanks!: Stu Young, Royal College of Nursing Students

Take II: Awaiting an appt with Nd:YAG

Two years ago in 2010 and post-cataract surgery I was literally full of the light and colour of a new year:

"2010" definitely not - future vision is 20:20!

Working in health you know not to take anything for granted, to live for today and what side effects and outcomes can follow clinical interventions. So, over the past six months I've noticed reduced vision in my left eye. Now I've no focus at all. Here's the situation across the four care domains:

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

It is frustrating to have difficulties again, but always sobering to be reminded of what being 'sighted' means. As I drive and also convey others I constantly consider the safety question. The extent of the deterioration is scary. My vision is still brighter than before the intraocular catarct surgery. Being a 'bloke', or plain stupid (what does medical sociology have to say about that?) I've put off addressing this, but time now to act mechanistically and get this fixed.

For some 6-9 months I have experienced blurred vision in my left eye. Now I cannot see distance or read with glasses. Flaring is starting in the right with headlights at night when driving. Problem: posterior capsular opacification. Solution: treatment using a Nd:YAG laser - neodymium-doped yttrium aluminium garnet; Nd:Y3Al5O12. Future side effect includes increased floaters, but my vision should be markedly improved and balanced once more.

It will be very good to have both eyes 'online' again. I've 3-4 days of leave left, and will head to the Lakes next month. Time to walk, run and pick up Drupal again. It is a reminder of the past going back to Wigan, the hospital where I did my general nursing.

Recognising I had a problem and the likely cause, I by-passed the opticians and went straight to my family doctor and asked to be referred to the hospital - Wigan RAEI where the initial surgery took place. The 'systems' including Choose and Book ran smoothly apart from instructions on telephone numbers to contact me.

Whether or not my vision will be '20:20' or better, I will just be grateful to be able to see as well as I possibly can.

Image source:
Rakesh Ahuja, MD

Mental health follow-up II: Drupal ScienceCamp Cambridge 20-21st Jan 2012

After the birds of a feather (BoF) session in Cambridge last month I spent an hour chatting to Beatrice and Matthew Taylor who share my interest in mental health and Drupal.

Since that Sunday morning I've exchanged emails with them both and am sharing some points here raised by Matthew. ...

Matthew:
There are lots of things that I'd like to talk to you about. I've been browsing your pages on the Hodges' Model and I'm really impressed. You've done a huge amount of work.

PJ:
Thanks for that! A lot of the content in the website is quite dated and the HTML & styling reflects this, but positive feedback is always very welcome and I also greatly appreciate your bringing the repeated paragraph in the Michel Serres paper to my attention (corrected now).

Matthew:
It seems to me, on first reading, that you're looking at things from within an institutional setting and that I'm on the outside. However, I can see that there are ways in which the two perspectives could overlap and that the technology now exists that can facilitate the testing of the fit between different health models (and their creation in the first place).

PJ:
Yes, I'm looking at things from an institutional setting in terms of working within the NHS (with regular social care contact), being on the service side of the nurse education system, and working amid a mechanistic medical system that also seeks to be (psycho-)social in orientation. H2cm - Hodges' model however, helps to provide flexibility in the perspectives we can adopt.

In that respect I left the 'institution' in 1985 to work in the community. Your point Matthew is a very useful reminder about not taking things for granted and to what extent is 'community care' free of the institution? What has the institution (of old) become?

I suppose the other side to this is that you are not on the outside. Instead of pushed into the nooks and recesses of individual minds, we need positive mental health to be pushed into the open. The community, the commons, society. We need an infusion of insight to combat stigma and a misalignment - holistic asymmetry - in physical and mental health education and delivery.

Matthew:
As you probably gathered, the direction that I'm coming from is that of personally managed mental health care records. Here are some of the websites that I'm using as guides:

http://indivohealth.org/
http://ontology.buffalo.edu/smith/

PJ:
These website are well worth knowing about - thanks very much. I'll explore them in more depth. Making enquiries (seeking guidance) on my research aims it was suggested to me just before Christmas (c/o Wolverhampton University) that my work seems to be more about ontology than a literature search. I've realised this for quite a while. Key attractions of Drupal include its RDF functionality and the examples provided by specific modules such as Neologism.

Matthew:
I'm currently building an ontology for mental health (from a virtual world perspective) using OBO edit http://oboedit.org . My objective is to embed the ontology in a Drupal website http://www.playsthething.org.uk/ that also exists to promote a conference on well-being.

PJ:
I'm clear that I'm not about to create a mental health record system, truly fascinating a project as that may be (especially in some sectors). There are proprietary and open source solutions out there. I'm also aware of problems with the uptake of Google's, the NHS's and Microsoft's respective attempts to engage with the self-maintained and managed e-record. Drupal's appeal for me also lies in e-learning and using Drupal educationally.

If you've a specific objective in mind Matthew then that immediately cuts through my concerns and that's excellent. I'm lost in my own bag of potential users and requirements. The thought of embedding a health ontology into Drupal is an exciting prospect. I wonder if there is a basic ontology that could fit with h2cm (as one or more conceptual spaces)?

Matthew:
I've been asked to guest edit a section of ArtsProfessional magazine, coming out in May, that will be focused on arts and well-being. I'm going to use it as the opportunity for launching the 'Moonshot for Mental Health' that I touched on at the Cambridge Drupal conference.

If you'd like to write something for the magazine/website on the theme of arts and well-being (and why we need a moonshot for mental health) then just let me know. I can let you know more if you'd like to follow this up.

PJ:
I really would like to contribute, so although I work full-time please do f/w more details.

Last summer in Warrington at Disability Awareness Day (DAD) (July 15 for 2012) I came across (the magazine) Reflections. Specific examples of art were also displayed at this event at Walton Park by 5 Boroughs Partnership NHS Foundation Trust and others. There is so much more that the arts can offer in mental health and the residential care / nursing home sector.

Matthew:
I'd be delighted if you were able to promote a Drupal/MH meeting. I'll start putting something together. Let me know if you have any ideas.

PJ:
I will and would be pleased to assist. There may be scope for a venue in the NW - I could make enquiries at least. There is always Munich and the European Drupalcon this summer!

Thanks for getting in touch Matthew. Lovely to share and talk shop with you and Beatrice also. I hope we can meet again.

Matthew Taylor

...

Health Care - drawing lines

Multidisciplinary care

Original image source:
http://www.jointline-group.co.uk/councils.php

Leonardo: models, limbs and spirit

On the 3rd February I headed off to London for the weekend to visit the National Gallery with (two) tickets for the Leonardo exhibition. This was an amazing experience on the Saturday afternoon. The exhibition was small in terms of room sizes and across two floors, but it was very busy and warm even with timed ticketed entry. The show comprised much more than the main exhibits; the drawings, several inspired works by Leonardo's students and audio commentary adding context. Text descriptions and several quotations also proved informative:

A good painter has two main objects to paint, man and the intention of his soul. The former is easy, the latter hard as he has to represent it by the attitude and movement of the limbs.

Leonardo da Vinci

Previous post:

Nursing: Art and Science ... Fra Angelico to Leonardo



Catalogue image source:
http://www.nationalgallery.co.uk/products/leonardo_exhibition/leonardo_da_vinci_exhibition_catalogue/p_leonardoEC

Locating the Spiritual in Care: (very big) Plantpots vs Green Windows

Last summer, July 13 2011 to be precise, the cover of RCN bulletin #278 declared 'Prioritise spirituality'.

I am not a religious person, but quite a spiritual one (I think). This RCN news item reported Professor in Dignity of Care for Older People at Staffordshire University, Wilf McSherry's views on spirituality. It is central across health and social care, (it is also vital in terms of cultural and spiritual literacy):

The practice of spiritual and religious care is about meeting people at the point of deepest need,' Professor McSherry said. 'It's not just about religious practices but preserving dignity'.

Also in that month, the 30th in The Times (page 19):
'Sacred forests bear witness to religion's unsung role in fostering a rich variety of life'.

This news concerned the extent of religious forests, with a project by scientists in Oxford to create a global map of forests under religious ownership and control. Now under the guardianship (whether intended or not) such forests have assumed importance as examples of biodiversity. Ruth Gledhill writes: From the Garden of Eden to Avatar, sacred groves have been central to religion and myth ... between 8 and 15 per cent of the world's land is regarded as sacred or religious.

With many remaining exceptions places of care have changed remarkably over the past 30-40 years. There remain many residential and nursing homes that prove challenging for health care professionals (I know they have told me over several years), never mind the residents and their carers. Challenging in the spiritual sense of the surroundings. I posted in 2010 about the wail of call systems. Visually though we must ask: how green is that care home?

Count - plants real [3]* : artificial [13]^#
  
This isn't just the colour of walls and use of curves to soften the environment, but access to outside, to grass, to trees and flowers. The benefits of real plants in the office environment are well established.  Being able to see a green vista greatly improves employee productivity and well-being. For those people in care what is the view outside their window, the lounge(s), the dining room? How can it be improved? For those essentially bed-bound can the furniture and bed be moved around periodically to achieve a new perspective?

It is still upsetting to see that those physically less capable of reaching the outdoors are elevated to first and second floors. Even with positive spiritual acuity of staff (the outdoors matters to all) readiness to hand and soul - a sideways glance through a window, the sound of rustling leaves through an open window - can make a huge difference:

Spirituality, dignity and respect. ...

*And in need of water. ^#Five over-watered.

Image source:
http://www.fanpop.com/spots/avatar/images/9492947/title/avatar_promo-screenshot-screencap

Call for chapters - Human centric visualization: Theories, methodologies and case studies

[Shortened for length from original post to ubicomp.org]

*** CALL FOR CHAPTERS  ***
Proposal due: Feb 24, 2012
Notification due: March 09, 2012
Full chapter due: June 15, 2012

A book edited by Tony Huang (CSIRO ICT Centre, Australia), to be published by Springer: www.springer.com
Web: http://www.wikicfp.com/cfp/servlet/event.showcfp?eventid=19780%A9ownerid=14065

1. Introduction

Visualizations (diagrams) are produced for people to make sense or interact with them. Rapid advances in display technology and computer power have enabled researchers to produce visually appealing pictures or compelling visual environments to end users. However, the effectiveness of those pictures in conveying embedded information to the users and impact of visual environments on humans have not been fully understood.
This book addresses issues related to design, evaluation and application of visualizations from a human centric perspective. This cutting-edge book is an edited volume whose contributors include experts worldwide, from diverse disciplines including psychologist, artists, engineers and scientists.
Academics, students, engineers and consultants will find this book useful for both research and engineering purposes.

2. Recommended topics include, but are not limited to, the following:

Part I: Introduction and overview

Current status and future challenges of visualization methods
Current status and future challenges of human centric visualizations research
Survey of evaluation methods in visualization
Survey of theories, frameworks, models, heuristics and design principles for visualization

Part II: Theories, models, frameworks, heuristics and design principles for human centric visualization

Theories of visual thinking, diagram perception, cognition and reasoning and their applications
Latest developments toward theories of visualization
Latest development of frameworks, models, heuristics and design principles for visualization
Applications of the theories, frameworks, models, heuristics and design principles
Adaptations and applications of theories from other domains in visualization

Part III: Methodologies for design, development and evaluation of human centric visualization

Approaches and practices of visualization design
Evaluation methods
Measurement metrics
Taxonomies of tasks
Design and evaluation frameworks
Development and validation of methodologies
Application of methodologies
Lessons learned and experience obtained in developing and applying methodologies

Part IV: Case studies of human centric visualization

Human factors (e.g., memory, cognitive ability, gender, individual differences)
Visual perception and cognition
Visual analytics
Social, cultural aspects of visualization
Implications of new technologies (e.g., displays, new media) on humans
User experience
Implications of interactive methods on humans
Implications of new visualizations on humans
Roles of human in collaborative visualization
Use of visualizations for decision making, learning, business, software engineering, science, security, biology, design, construction, cartography, etc.
Visualization in virtual reality/mixed reality/augmented reality
Case studies and evaluations of interfaces, systems and prototypes of visualizations
Lessons learned and experience obtained in evaluating and designing visualizations
....

4. Important dates

Proposal due:  February 24, 2012  (Proposal has no length limits, usually should include motivations, method, contributions and a brief outline of the full chapter)
Notification: March 09, 2012
Full chapter due: June 15, 2012
Full manuscript due to publisher: August 1, 2012
Book publication: October 1, 2012

5. Contact

All submissions and inquiries should be sent to:
Tony Huang ...

Now I am - IST

Since January 9th 2012 I work in IST, that is the Intermediate Support Team.

This means my colleagues and I try to facilitate early discharge, prevent admission, relapse and also have a gate-keeping role for the local in-patient beds.

Working in IST and being a nurse makes me think about all those other –ists that are out there.
Several immediately fall out of Hodges' model:

Human-ist, human biolog-ist, technolog-ist, psycholog-ist, educational-ist, public-ist - for public [mental] health, socio-technolog-ist.

As per the many nodes, edges and dimensions within Hodges’ model being an IST means:

taking the edges off the things that count but 

visiting all the edges

So, yes I am a social-ist too. You have to be working in health and social care:

As you do your bit to deliver safe, lean and yet high quality nursing and social care - engage in discussions about an individual's health care, care placements, care transitions you are also a polic-ist^*. You take the government’s policies, the welfare reforms, the savings, and latest legislation and sell them to the public.

While you do this you try to ensure you are not ageist, sexist, racist, elitist and those many other ists that try to prevail - especially amid chaotic change.


^* Policist is I believe a neologism in English. What I mean is the way that workers on the ground (inevitably) enact health and social care policy, thereby also selling it to the public. There may be a word that fits the Bill, but it's eluding me ...

Follow-up: Drupal ScienceCamp Cambridge 20-21st Jan 2012

Stefan van Hooft @_iCompute kindly took these notes for the Mental Health session, 10.45am 22 January 2012 (mentioned previously on W2tQ). Stefan captured the topics that were quickly and briefly raised among the seven attendees (contact details provided but withheld here). I have added some [additional comments] and my response follows:

--- Twitter hash tags ---
Mental Health #mhuk #ukmh [global mental health hash?]

RDF
Solr
Sparkle [SparQL]

• accessibility within website
• openair Open source mental health [OpenEHR]
• mental health record
• care plans
Who has access to information?

•  Set up a system, you can give and revoke others access to your data
• "Flourishing" or "In treatment"

Use Drupal:
     - distribution
     - accessibility
     -
Is there a Group on drupal.org about mental health?

Security is crucial!
Pubsubhubbup [ http://code.google.com/p/pubsubhubbub/ ]
Spartacus report
Burn out
#Nhssm, NHS social media

<->

Dear Stefan and All,

STEFAN'S SELF-ASSESSMENT TOOL

I am interested in the application you showed, it reminds me of the STAR - SPIDER format and approach. I think there's a tool like this in forensic mental health - and no doubt other areas?

http://hodges-model.blogspot.com/2010/06/carers-support-evidence-measures-and.html

At some point Stefan it would be good to feature your image based tool when suitably complete on my blog; do you have a video at all?

HODGES MODEL

If anyone is interested in receiving more details on Hodges model please let me know. This model looks simple but it is really powerful in terms of scope and application.

...

FUTURE MEETING

Matthew mentioned the possibility of a small gathering combining mental health and Drupal. I'd be pleased to help with publicity - twitter, FB, Linkedin and the blog and have links with many other groups.

DRUPAL HEALTH GROUP

Here is the link to the health care Drupal group:

http://groups.drupal.org/healthcare

- note at the top the link to Drupal health care sites.

openEHR

Here is openEHR which I mentioned:

http://www.openehr.org

RDF and related

http://drupal.org/project/neologism

Lovely to meet everyone and really pleased to have the chance to share an hour (after the meeting) with Beatrice and Matthew. It is very good that mental health and disability came up at a Drupal meet. I hope to attend Drupalcon Munich so maybe there is scope for a BoF meeting in the summer?

<->

Shortly I'll post some additional observations by Matthew Taylor another participant. There I'll expand on my requirements and expectations of Drupal.

Drupal ScienceCamp Cambridge 20-21st Jan 2012

Two weeks ago Drupal ScienceCamp was a great success thanks to the organisers and sponsors. There were about 60 attendees with a European flavour too. Being a Science Park we had to circumvent the fence, the alternate access gates closed over the weekend. The three of us who left the hotel soon became six ... as we walked around to the very smart venue - Napp Pharmaceuticals Limited.

On the Saturday I attended sessions on responsive design, Drupal modules, Less CSS (at this point I wish I could have split in two Drupal search and Solr Wizardry had very positive comments), From flipcharts to Drupal Features, and Migration, upgrading and moving house. All very helpful.

Sunday was spontaneously self-organising. People offered to deliver sessions and meetings in a BoF - birds of a feather format, others requested the things they were seeking. Whether a sign of my time in Drupal [v. 4.7], or possibly Drupal's ever increasing diffusion or both; seven of us gathered around mental health and disability.
More on this to follow.  ...

h2cm at 7th Annual Social Work Action Network Conference (SWAN)

The final programme is still to be confirmed, but I'll be presenting Hodges' model as a workshop next month at the 7th Annual Social Work Action Network Conference (SWAN). This will be hosted by Liverpool Hope University on 30 and 31 March 2012. This is a 40 minute train journey for me - a nice change.

As the website states: There will be two sessions of the conference made available to people to present their own research or conduct workshops. We are keen to facilitate alternative styles of presentation and would encourage people to consider group presentations, dramas, art-based workshops, social pedagogical based presentations as well, of course, as more traditional research presentations.

For several decades I have worked with many Social Workers: sitting across the desk at a community mental health project; as team members; doing joint home and residential care visits; being chased for assessment reports for 'Panel'. It will be very interesting to take in the activistic fervour at the conference. The other aspect of social work I am aware of is the relentless re-organisation they face - in common with health.

I also relish the opportunity to see how Hodges' model is received. A presentation and workshop will be prepared. Is h2cm the generic, multidisciplinary and universally applicable conceptual framework that I believe it to be?

"You're a nurse? That's cool. How much do you make?"

Somebody asked:

"You're a nurse? That's cool, I wanted to do that when I was a kid. How much do you make?"

The nurse replied: "HOW MUCH DO I MAKE?" ...

I can make holding your hand seem like the most important thing in the world when you're scared. ...
I can make your child breathe when they stop. ...
I can help your father survive a heart attack. ...
I can make myself get up at 5 a.m. to make sure your mother has the medicine she needs to live. ...
I work all day to save the lives of strangers. ...
I make my family wait for dinner until I know your family member is taken care of. ...
I make myself skip lunch so that I can make sure that everything I did for your wife today is charted. ...
I make myself work weekends and holidays because people don't just get sick Monday thru Friday. ...
Today, I might save your life. ...

How much do I make? All I know is, I make a difference.

Re-post not only if you are a nurse or you love a nurse, but most importantly, re-post this if you respect their work.


My source: Stu Young, Royal College of Nursing Students 

Related 2014: "You're a nurse? How much do you know?"