George Monbiot & Ewan McLennan - Breaking the Spell of Loneliness

individual

|

INTERPERSONAL : SCIENCES

humanistic -------------------------------------------  mechanistic

SOCIOLOGY : POLITICAL

|

group-population

My source: BBC 2 or C4?

the GE METRY of CARE and C NTRACTS

individual
INTERPERSONAL : SCIENCES

humanistic ------------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

group

Image source:
http://upload.wikimedia.org/wikipedia/commons/thumb/a/a0/Circle_-_black_simple.svg/500px-Circle_-_black_simple.svg.png

#entanglement

Update papers, Drupal and future April 2012

You might have noticed a slight hiatus in posts recently, in fact over the past six weeks or so. During that time I was working on a paper following the November's CARDI conference when two others popped up again out of the academic ether.

I've probably whined on before about how I write, but don't benefit from like-minded people to read stuff and bounce ideas off. It's not that my nursing and multidisciplinary colleagues are not academically inclined: far from it. There's people taking time to travel to Lancaster, Preston and Manchester to pursue good stuff. It is about mindset though for the many (and having a cussed question). That means being in the groove, finding your rubric, whatever you want to call it. The other week I was trying to encourage a colleague to do the Master's thing; because if you (we!) don't soon then it ain't going to happen.

One paper a co-written effort has been ongoing for quite sometime (must be years). Another paper highlights my idiosyncratic style when working solo (I bet my two current co-authors might agree to that) quite a few referees have. The latest co-authored effort 6,000+ words has actually come together quite quickly over the past six weeks. There was an abortive start when extending a poster was abandoned for a forthcoming journal special topic issue. Once a target publication was identified  things took shape rapidly. Nothing like a deadline to charge the batteries. No doubt there will be changes to follow, but it's a fitter piece of work on submission than I could have produced alone. I'm sparing you the specifics for obvious reasons, but when there's progress you'll have the details here. In the meantime thanks George and thanks for staying the course Mike! Extending the h2cm bibliography is never easy, but then academic writing is not intended to be.

Of course I need to leave Open Office and pick up Drupal in earnest. With the matrimonial home now a matter of many happy memories - one thing I miss is a key in the door to a place of my own.

Since summer 2008 I would have been lost without family support - thanks mum! I'd also be lost without Sue where I spend most of my time*: thanks to you too Sue!

Space to work in a consistent way though just isn't there presently. Yes, I know what this means. "You're NO genius!" If Drupal was going to happen, you'd make it happen: whatever!

The laser treatment last month worked fine: brilliant ;-) in fact. My poor left eye, is now my best. They didn't do the right, it wasn't as bad as they thought (suddenly though I notice the problem there too).

I'm really looking f/w to Sweden next month and Conceptual Spaces at Work. That trip's not about presenting - going to learn.

I've been watching SVG for many years and notice that the SVG Open series of conferences is changing its name to The Graphical Web.

Now if an investor needed a sign....

In between there's Drupalcon Munich.

 Wondering if I can justify going to Zurich in September?

*Drafted and posted in Tom and Jerry's!

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

Social Media in Healthcare Infographic

Via: PowerDMS

Although the emphasis of this graphic is USA centric there are many aspects that apply generally, especially social media policy. If anyone has health care infographics with a UK, EU, developing nations focus please get in touch.

Thanks to Ray Lau, Graphic Designer for approaching me regards this.

Jarvis's book 'public parts' [ii]: The sanctity of clinical data, INFORMATION, knowledge ....

This post extends the axes displayed in the previous post (i) and continues the discussion. These posts are prompted by the appearance of Jeff Jarvis's book - not a reading of it. I suppose they are an ante-review?

As before in the figure I have placed information (and the person) at the center. From (i) - transparency may be a public good in politics, local government and public life, but does the same apply for an individual person? It could be that Jarvis identifies the benefits that can be accrued from being transparent about my medical conditions.

Notable individuals, frequently those already in the public eye, have done so with an activist intent. A key example is Terry Pratchet with his disclosure and account of living with Alzheimer's disease. Mr Pratchet has been able to raise the public profile of dementia, quality of life in senior years, and also euthanasia and individual choice. If publicness effects debate in this way then that is clearly desirable. As we have seen with the internet however, there is a market for our data whether personal or merely our internet browsing habits. Where do we go? What are we searching for - a new digital camera, old book, a new HD TV?

Pre-internet a problem for people with condition 'X' or 'Y' was knowing: what to expect? (Even now due to their health and information literacy, a great number of people will still be stuck, excluded and disadvantaged.) What are good strategies to adopt? How have other people coped with this? What happens next? What are the odds? Are there other people living with this? The only opportunities to engage with other people who have something similar may be when sat in the out-patient department. An opportunity a further remove may be the medical diagnostic appointment for various forms of imaging and tests.

These days of course the whole pathway is person-centered and information focused (isn't it?). There are online communities for people living, coping and dealing with the full gamut of clinical disorders, recognized and even some as yet without a place in the medical lexicon.

Part of the debate here for me is that online communities, forums often have rules, they have spam detection and should be 'secure'. Plus of course users are usually encouraged not to use their real name, and be discreet as well as all the other points of etiquette that apply. If Facebook or LinkedIn was to include a new revision that caterred for my 'public' health record then I still wonder if this is publicness of another order. If you assume public office then it is beholden on you to be transparent. It isn't that I believe that transparency on an individual level does not apply. My job has me taking an opaque person and trying to make things transparent.

Perhaps this is the art in health care: 

learning to read that which is opaque such that it is rendered transparent?

For all that though I can't help but equate transparency with politics, companies, NGOs and the like.

There's another thing with the very public health record 4-U; will clinical terminology be affected? This may be a good thing. There are a lot of people, groups who want to shake up the medical establishment, the drug companies and modern practices. Here on W2tQ I wonder about the terms that will be needed in and around Hodges' model. Should a new website use an existing nursing classification, a folksonomy or a combination?

Medical progress has been hard won, many communities around the globe have yet to have access to basic health care, doctors, midwives and nurses. While the developed nations continue to talk about person-centered care, there remain places where ongoing community-centered care would be welcome.

Working in mental health for three decades you know of psychiatry in dissent and the debates ongoing around stigma, access to services, diagnosis and the use and abuses of medication. I am an idealist in health and informatics, both as distinct enterprises and in that yet to be fully realised combined formulation.

I worry about the trends in personal information disclosure, the rise of self-diagnosis online, and the growth of counterfeit drugs sold on the web. Effective and informed self-diagnosis can save health services time and money, but success, safety, and savings are not a given. So much depends on literacy.

I do hope at some point to read public parts - it is very timely. We have to ask however, just how far does the market want to reach? Where or what exactly are the envelopes involved? Do we really want to take advertiser's values as one edge of the envelope? If the genie is easy to get back into the bottle then no problem ...

But where do you go to my lovely

When you're alone in your bed

Tell me the thoughts that surround you

I want to look inside your head

Where Do You Go To My Lovely
Peter Sarstedt

Jarvis's book 'public parts' [i]: The sanctity of clinical data, INFORMATION, knowledge ....

In New Scientist last week another book, a brief review caught my eye. This one concerns a topic of great sociological, clinical and political interest to me. To be clear this is not a review; consider it raised eyebrows at the book's arrival and some speculations. Here is the intro from New Scientist's website:

WHEN writer Jeff Jarvis decided to tell the world about his prostate cancer he didn't spare the gory details: he happily blogged about his "malfunctioning penis" after surgery, and the adult diaper he had to wear.

Too much information, some may say. Not for Jarvis. He is an outspoken advocate for living one's digital life in the open and his latest book, Public Parts, is one of the first to analyse the shift towards more transparency thanks to Facebook, Twitter and the other big names of this new digital age.

(Niall Firth, CultureLab, New Scientist)

For quite a while I've been wondering about the informational form of 'climate' change. The existence of the NHS's HealthSpace, Google Health, and Microsoft HealthVault had me watching for erosion of the public's attitudes towards clinical confidentiality. Jarvis refers to this as publicness. Like a coast line this particular form of erosion occurs on many levels, given the vagaries of starting conditions (the patient-doctor relationship, the medical establishment), geography, tides, weather and local policies. Would the temperatures change within health care itself - professional values, disciplinary outcomes, The Royal Colleges?

Even if HealthSpace et al. are provided on the basis of being secure, encrypted, meeting the local requirements of data protection and information governance...; is this tantamount to making confidentiality soluble AND throwing it into the water? How big a step is it to the public's posting their personal health information in public online arenas: open and closed? Suddenly the patient becomes the data entry administrator, if that information can be shared and accessed by the health establishment. From a business model and policy perspective this also saves money in an Ikea flat-pack-transport-and-assemble-it-yourself kind of way.

Jarvis's book is evidence, that demonstrates the ability of social media like Facebook, LinkedIn and Twitter to alter attitudes towards disclosure of personal data. Medical details are usually restricted to the medical consulting room and centrally held clinical record. Google Health is closing down though; it has failed to have the broad impact they hoped for (see Google's blogpost). I wonder if this is reflected upon in the text? With the NHS behind HealthSpace perhaps these three 'solutions' are far from equivalent examples?

If we take information as the concept around which this debate revolves with an individual, a person also at the center ('data subject') then several dimensions can be found. Usually, I am increasingly transparent to a greater degree from my work colleagues, friends, family to my partner. This is one of the many ways that relationships are defined and differentiated. Certain things are opaque to the public and commercial world at large, because they are considered private. Clinically, such a class of information is vested in a professional relationship. This does not mean I have signed a contract to only divulge my medical history to my doctor. Even there - a need to know assumption usually pertains.

As Firth notes it is good that Jarvis is stimulating a debate about what is privacy. How has the concept changed, since the 1950s, 1980s in the media (old and new) and in health care?

Apparently Jarvis makes an analogy with Gutenberg's original printing press and its social and political effects. There may be other subtle aspects though that any such revolution must either work around or overthrow. In the first instance though I consider - without reading the book I have to add - some of the main points which are illustrated below.

Information exchange (disclosure) is always within some context or other: interpersonal, political, social; scientific (clinical) and spiritual hence the inclusion of the clinical - social axis. Tied with this is 'space'. Although the spaces defined by virtual and mobile have assumed primacy physical spaces still count: surgery consulting room, clinic, community health center, hospital ward, patient's home, nursing home. ... I've added transparent - opaque to contrast with public - private these are related yes, but analysis may reveal they are distinct in their application?

Although society has changed markedly in terms of technology and the communications it affords - the modes, tools, languages, access, networks, distribution; there is surely still a notion of what is personal and what might become social - (public)?

Technology, technological means and the arrival of social media does not itself constitute universal attitudinal change in health as Google have found (perhaps the pace of change in attitudes was not quick enough for Google Health so they moved on). Amid the hectic pace of life we should be pleased if some things - like public health disclosure - prove to be laggards in terms of change.

I'll expand on this soon with a few more axes - continua to flare.

Axes image original source from: https://den.dev/