Rare Disease Day 28 February 2014

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

Source: http://www.rarediseaseday.org/

I am honored to stand, in her graceful place, and shine a light on a delicate group of individuals who, nevertheless, in sheer numbers are a force to be reckoned with. Thank you, Sean Hepburn Ferrer

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing. 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. 50% of rare diseases touch children.

In the words of Audrey Hepburn, “We cannot save everyone… but the knowledge that someone is coming to their rescue… that we care as a society is ultimately as important…”. It is in this spirit that we invite you, alongside Sean Hepburn Ferrer, to Join Together for Better Care.

group - population

Book: The Last Asylum

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

The Last Asylum	-sociology -medicine
medical- social-

group - population

Winwick Hospital remembered

Image source: Wordery

NW England: Pathways to Health and Wealth 31st March 2014 (4-7pm)

Dear all

As discussed in our meeting, here is the website for the LU Cross Faculty KE event Pathways to Health and Wealth taking place on 31^st March 2014 (4-7pm):

http://www.lancaster.ac.uk/healthandwealth/

Please let me or Becky Gordon b.gordon AT lancaster.ac.uk know if you have any queries and please pass on to any of your industry connections who you think might be interested to find out what we do, how we do it and how we can help them do it too!

Thanks, Karen

Dr Karen L Wright
Peel Trust Lecturer in Biomedicine
Faculty of Health and Medicine
Division of Biomedical and Life Sciences
Furness College
Lancaster University
Lancaster LA1 4YG
Email: karen.wright AT lancaster.ac.uk

[ Just to note I have not attended these meetings, the post is copied here to help in a small way with local publicity. PJ ]

Drupal in Education: Richer experiences with Drupal 7 and H5P (HTML5 Package)!

The H5P module is finally available for Drupal 7! Now you can download H5P and H5P content types empowering you to create great rich experiences for your users to enjoy. Content like interactive videos, presentations, drag and drop, fill in the blanks questions and more are available from h5p.org.

We have received many enthusiastic requests for an H5P D7 module and we are proud to present the newly released version. You can find it available on the H5P project page.

You create the content with your web-browser and the content will work just as great on smartphones and tablets, as on you desktop computer.

Below is a summary of the H5P content types that are currently available for Drupal 7 (and all other platforms we support).

Interactive video
Perhaps the most powerful tool in the H5P toolbox. Upload videos and animations, and make them interactive by adding quizzes, images and text along the way.

Presentation
Create a presentation slideshow with interactions along the way. Add text, images, video and various quiz tasks to your presentation.

Boardgame
A level based board game where the user must complete tasks in various levels to win. Depending on whether the user completes or fails, a video is shown at the end of each level. The game is fully customizable.

Flashcards
An image is displayed and the user has to insert a corresponding text by using the keyboard. The card turns to display the solution. Several cards can be added in a sequence.

Fill in the blanks
Create sentences and leave out words, adjectives, conjugations etc. for the user to complete by typing the missing text on the keyboard.

Question set
Your staple quiz question tool. Add a mix of multiple choice questions, fill in the blanks & drag and drop tasks.

Contact button
A simple widget that allows users of your website to get in touch with you using their preferred channel, such as email, Facebook or Twitter.

For those that are new to H5P, H5P is short for HTML5 Package, and is a simple way to create and share rich and interactive web content. H5P is modular and consists of several content types and applications, perfect for use in e-learning and advertising.

See all the content types in action on H5P.org

With H5P you can:

• Export and import content types and applications between sites, e.g. from a Joomla site to a Drupal site.
• Use existing content types and applications, and build on these to create your own content.
• Create and edit rich web content directly in your browser. No technical skills are needed.
• As a developer, build upon existing content types and applications, or create you own from scratch. Share your work with the rest of the world on the h5p.org!

Source: https://groups.drupal.org/node/409763

Looking forward this next weekend and London for DrupalCamp.

18th Annual International Philosophy of Nursing Conference

in association with the International Philosophy of Nursing Society
(IPONS)
September 8th, 9th and 10th, 2014

Hosted by the School of Health Sciences, University of Nottingham, England, UK

Brave new world?
Health, technology and evidence based practice

Nurses have seen some fundamental changes in the way that healthcare is delivered. Body care is at the centre of nursing practice but the nature of that care has been extended beyond the personal, human-to-human contact, and is increasingly refracted through the medium of technological/scientific interventions. The way that these technologies interact with the human dimension does, and should, require critical analysis.This is particularly the case for nurses who are increasingly expected to adopt methods and approaches that change the nature of the nurse patient relationship.  Added to this is the way that clinicians/academics/researchers interact with health care issues, locally as well as globally.

There is an established debate and tension within the evidence based practice literature that illustrates a deep ambivalence about how a holistic approach to clinical practice relates to, enhances, or is undermined by the new health technologies. These include care pathways, systematic reviews of knowledge, the enabling/disabling effects of technology and the putative implication that there is an empiricist and dehumanising process involved in these developments. For example, what happens to the complexity of ethical debates when they are shaped in the form of arguments based on literature reviews? These may wittingly or unwittingly serve as a means of translating complex moral issues into usable clinical regimes that partially mimic meta-analyses. Furthermore we may ask what place narrative knowledge and qualitative experiences may have in this new world of implementation technologies? And how do the new interventions of telemedicine and other policy drivers that emphasise the “hospital-at-home” impact on the ways that nurses carry out health care?

This conference intends to examine these and other issues related to ‘Health, technology, and evidence-based practice’.

CONFERENCE DETAILS

Details of the Conference can now be found at the following link: ...

These details include the list of Keynote speakers; the venue; a Call for Abstracts; conference registration and accommodation, and transportation. Abstracts of the Keynote speakers and the full Conference Programme will be available soon on the above link.

Any specific queries should be addressed to Dr Stuart Nairn ...

other IPONS posts on W2tQ

Man Runs a Loop-the-Loop (in Hodges' model - discuss?)

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

group - population

Call for contributions: 'Interpreting the Information Age' new avenues for research and display

November 24 – 26 2014

Science Museum, London

In autumn 2014, the Science Museum will open a new permanent gallery, Information Age. The gallery will expose, examine and celebrate how information and communication technologies have transformed our lives over the last 200 years. To mark this launch, the Museum is hosting a three day conference which will discuss how the history and material culture of information can be made relevant for today’s audiences.

From the development of global telegraph and computer networks, the creation of constellations of satellites that silently orbit our earth, and the growth of radio, telephony and cellular networks; each technology can be understood through a network of people, practices, devices and infrastructure. Approaches which focus on overly technical histories, individual innovation or inevitable progress fail to acknowledge the role of users in the history of technologies and marginalise a majority of readers or visitors who are engaged by human stories and social history. By contrast, Information Age has taken a user-centric approach, not only in the stories and objects selected for display, but in the way the gallery has been designed and developed. Participation with a diverse range of audiences has been at the heart of the process, providing new avenues for research, fresh perspectives on our collections and original ways to interpret the information networks of which we are all part. We invite papers that include insights from researchers, academics, museum professionals, community partners and participants.

The conference structure is proposed to include:

Day 1: New avenues in the history of information and communication technologies

Day 2: Interpreting and displaying the history of information and communication technologies

Day 3: Reflections on the process and practicalities of participatory practice

We are especially interested in papers that address the following themes, but are happy to consider other proposals. Please contact the organisers for guidance. 

New avenues in the history of information and communication technologies

• From devices to networks: taking a broader approach to the history of information and communication. How has historical analysis expanded our understanding of information networks as inherently social-cultural phenomena? How can museums move beyond displays of devices, to reveal how networks unite people, places and ideas?
• User-driven innovation: technological change does not only occur at the moment of invention, but in the hands of users, who adapt and appropriate new technologies. What tools and techniques can we use to reveal previously hidden user stories?
• Spaces and places of information: How are institutions celebrating the local and global stories in the history of information and communication technology? What partnerships are being formed to support this?

Interpreting and displaying the history of information and communication technologies

• Collecting information: what are the challenges of collecting the material culture of information and communication? How can opening collecting processes to wider audiences enhance understanding, and what are the benefits for both researchers and the wider public?
• Displaying information: innovative approaches to the history, present or future of information and communication technologies.
• Preserving information: the challenges for museums, libraries and archives in preserving our increasingly digital lives.
• Whose story? As institutions strive to tell the story of information and communication technologies from the perspective of users and co-producers, how can we ensure that we are representing a diverse range of voices? 

Reflections on the process and practicalities of participatory practice

• Breaking down barriers: what approaches are being taken to ensure museum collections are accessible to wider audiences? What interpretation approaches can be adopted?
• Collaborative interpretation and design: how are institutions and audiences working together in exhibition development? What are the benefits to the museum, participant and ultimately the gallery visitor? What are the perceived risks to the museum’s authority?
• Ensuring legacy: how do museums capture the process of participatory practice in a meaningful way? What evaluation methodologies can be adopted? How can museums support partners and participants in the longer-term? 

How to contribute

To submit a proposal, please send a 250 abstract outlining the topic of your paper, along with a 100 word biography, to [ research AT sciencemuseum.ac.uk ] by Friday 28th March 2014.

We welcome proposals which could be delivered either as paper presentations or for consideration as panel discussions with other contributors, along with proposals for workshops which practically address the conference themes.

My source: HUMANIST list

Conference: Design as Caring in an Urban World - Final Call for Papers

Design as caring in an urban world: Royal Geographical Conference, London, Tuesday 26 to Friday 29 August 2014

In his essay, “Building, Dwelling, Thinking”, Heidegger considers the interrelationships between care and design by arguing that we are only capable of building well when we know how to dwell, that is, cultivating attachments to our environments and, through this cultivation, giving and receiving care. Recent work in areas such as urban and cultural geographies, and science and technology studies, has further elaborated on this connection between care and design by exploring the affective and relational work that goes into shaping and repairing the fragile attachments between the human and non-human materials that compose the urban world. At the same time, the materiality of urban environments is often found to be inattentive to human difference and diversity, and rarely shaped by, or exposed to, a caring design ethic.

In this session, we seek to bring concepts and practices of care and design into a closer dialogue with one another in order to develop new ways of thinking about the (co) production of urban environments. It is our belief that now, more than ever, a rethinking is required about the relationships between urban design and care, as issues such as sustainability and inclusivity ask for modes of designing and dwelling that convey the affective and relational sensibilities and values of caring.

We are interested in stimulating an exchange of ideas and inspirations between urban design and care by engaging with the ways in which caring skills and sensibilities can become expressed through design practice and thinking, and also the ways in which caring knowledge can be a resource for reconfiguring urban spaces. The questions explored in the session include, but are not limited to, the following:

• How is caring embedded and expressed in daily encounters between people and urban environments, including buildings, spaces and technologies?
• What kinds of skills and values of urban design do these encounters cultivate and what can be done to make public and support these?
• How can an ethics and politics of care and caring be instilled into the design of places and what does a caring design ethic refer to and entail for practice?
• What are the pedagogic and practical challenges in creating caring design values and practices?
• How could an ethics and politics of care be mobilised as a form of constructive critique of current urban design discourses where the sensibilities and values of care have often received less attention?

Session convenors: Charlotte Bates, Rob Imrie, and Kim Kullman

Please send a proposed abstract of 200-300 words to Charlotte Bates (c.bates AT gold.ac.uk) or Kim Kullman (k.kullman AT gold.ac.uk) by February 19th 2014.

Five Days at Memorial by Sheri Fink: Book

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

Five Days at Memorial by Sheri Fink

group - population

Five Days at Memorial by Sheri Fink: The Indepedent - Review

Image source: http://www.barnesandnoble.com/w/five-days-at-memorial-sheri-fink/1114975091?ean=9780804128094

Joint Strike Care F-4(5)

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual(?)

Social Reflections on Power	Joint Strike Fighter F-35 Lightning II

group - population

Joint Strike Fighter F-35 Lightning II

Image source: https://www.f35.com/assets/uploads/downloads/13661/9777287314_9a87af14da_o__medium.jpg

End of Life Care: Gold Standards Framework (Heaven's door)

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

PRIMARY CARE	ACUTE CARE
CARE HOMES	DEMENTIA (CARE)

group - population

Looking at a table 'GOLD STANDARDS SET BY BENCHMARK PROGRAMME' (p.23) in Prof. Thomas's HSJ article, I could see an instant fit between the four listed care contexts and the domains of Hodges' model.

There are also many overlaps and of course Hodges' model is an idealised resource. For example,  governance applies across all the above and in that way all can be placed in the POLITICAL domain.

Further points explaining the above includes:

• The GP and primary care seeing the person first not the diagnosis. Again in this sense - respect and dignity we can place all these care specialisms in the INTERPERSONAL. You would hope that primary care 'know' the patient as a person, an individual; or at least through recourse to the primary care record.
• If a care home 'works' it will be able to deliver care almost transparently, it is not a process but a social gathering. It is not the person's home (their home is not something to be forgotten, replaced like their past), but it seeks to emulate this as far as possible. Care is a routine that is also personalised and even at the end of life there is peace, calm and dignity.
• Dementia care is a political challenge, a priority and challenge across all the domains. As in the previous post - what training is provided to Health Care Assistants and other staff? How is the strategy for dementia progressing across all these care environments?

The National Gold Standards Framework Centre in End of Life Care

Thomas, K. (2014) 'End of life care is a litmus test for the whole of the NHS'.  HSJ, 31 January, 124, 6384, 21-23.

HCA training: Knock, knock, knocking on the political domain's door

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

emotional care	physical care
social care	FRANCIS - a year on:  How much training do healthcare assistants have before their first shift on a ward? 25% = none

group - population

Although that 25% sits nicely in the POLITICAL domain, what is the impact of this finding across the domains overall? Whether or not the impact is equally shared across the interpersonal, sciences and social domain, upon which domain will it end up knocking?

Calkin, S. (2014) Francis impacts on culture and patient safety, HSJ, 7 February. 124, 6376, 4-5.

[hifa2015] Wikipedia, Medicine and a Language of Your Choice

Wikipedians and Translators Without Borders have been collaborating for more than two years in an effort to improve access to medical information. [1] Over this time we have improved more than 30 key medical articles in English and are working on translating them into around 60 languages. This effort has resulted in more than 3 million words of translated text. [2]

The work is having an impact. Wikipedia’s medical content is the single most read medical resource globally, [3] receiving about 5 billion page views in 2013 for around 180,000 articles across 286 languages. It is also often re-used by other sources including university textbooks by Boundless.com which reaches more than 3 million students, [4] Google, and many others. Additionally the Wikimedia Foundation through partnerships with cellphone companies has secured Wikipedia browsing without data charges for more than 500 million people in the developing world (currently rolling out in many regions with more carriers being added). [5]

Most of these efforts are accomplished entirely by volunteers. Volunteers who believe that all people deserve free and easy access to high quality health care information in the language of their choosing. The number of people currently working on these efforts are however small. To expand our work we need more people to join us who share our dream. For many aspects of the project there is no formal registration required. One can simply begin editing on Wikipedia.

If one is interested in translating from English to their native language they can contact enrique at proz dot com. Currently we are primarily looking for people to help in non European languages as in major languages much content already exists. Additionally we need people who can help add already translated article to Wikipedia. It requires a bit of time to figure out the Media Wiki markup but not too much. We are specifically looking for help adding articles in Arabic, Polish and Dutch right now.

Please let us know if you would be interested or wish to learn more.

James Heilman & Lori Thicke

MD, CCFP(EM), Wikipedian Founder and 
President of Wiki Project Med Foundation Translators without Borders

References

[1] https://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Translation_task_force

[2] https://en.wikipedia.org/wiki/Wikipedia:WikiProject_Medicine/Translation_task_force/RTT

[3] http://www.imshealth.com/portal/site/imshealth/menuitem.c76283e8bf81e98f53c753c71ad8c22a/?vgnextoid=ebc072cc270b3410VgnVCM10000076192ca2RCRD&vgnextchannel=ba11e590cb4dc310VgnVCM100000a48d2ca2RCRD&vgnextfmt=default

[4] http://blog.boundless.com/2013/12/marching-forward-boundless-settles-lawsuit-traditional-publishers-continues-change-education/

[5] http://wikimediafoundation.org/wiki/Wikipedia_Zero

 
James Heilman
MD, CCFP-EM, Wikipedian

The Wikipedia Open Textbook of Medicine
www.opentextbookofmedicine.com
__________

From December 2013 to March 2014, mPowering Frontline Health Workers is supporting an in-depth exploration here on the HIFA forum around the information and learning needs of Community health workers (CHWs), and how we can meet those needs more effectively and efficiently over the coming years. Further information: http://tinyurl.com/hifa97

Care pathways: 15 minutes on Monday - how far is that?

On Monday I have a quick visit for 15 minute slot on care pathways at an interprofessional study day for 2nd and 3rd year students.

After the short presentation I'll ask the question of what difference the students can make to the patient's care pathway. There may be value in continuing the 'journey' metaphor?

They can ensure the care pathway is well-documented (otherwise it doesn't exist, and travel on it never happened) they can check it is accessible (an achievable goal) and that it does not trip anyone up (we don't do - iatrogenic).

There are further tests: is it navigable, tried and tested, a safe (evidenced-based) route? As the student's contemplate a major step in their health career, we really need them to focus on the health career of the persons in their care.

[ There won't be time for this: but do we need to wait until the 'end' for the outcome and capturing that (feedback). Or can do we this verbally, incrementally (positive impact on quality)? ]

I could ask them all to stand and make like sign-posts, but for the risk of poked eyes. It's true though, sign-posting is an important job, but how we do that is another post (the value of self-discovery as learning).

Once medically fit the key thing should be checking the person's (not viewing them totally as patient) wayfaring skills.

OK, who took my care pathway?

Can they read the map (are they health literate)? Can they find a map? Do they have a stay-well, recovery and well-being ... compass (a conceptual framework, an app, care plan)? If there literally is no self-care pathway under the patient at present, then the student can help them and their carer if necessary to find or create this compass - across the required care domains.

THEN this person (potential future patient) can avoid having to step off their self-care pathway and onto the health care pathway. You see there's a risk and a cost in that particular transfer.




Image source: http://www.farlandgroup.com/customer-journey-mapping/