Good architecture is often invisible, but it allows whatever is happening in that space to be the best experience possible.
Pezo von Ellrichshausen
Good architecture may have something in common with good health; it is something that can be taken for granted. When things go awry and are wrong then architecture and health suddenly impose upon us, a major intrusion.
As I may have mentioned before, in the past I've been asked how I've managed entering such and such care facility for so long. Within health there is recognition of heartsink patients. There are still heartsink buildings too. Not purpose built, seemingly either all narrow dark corridors, interrupted when doors let in shafts of light and assault dignity and privacy; or large 'lounges' that still invite armchairs to be flung against walls.
Architecture like this is not invisible. Walls are walls, blanc, flat and solid. Pictures removed due to safety concerns. Two holes and exposed plaster testify to what? Now, after six months....?
Even for the confused there are few potential found spaces, spaces to sit, stand, be; spaces towards which some personal impetus might have a person gravitate. A space of relative quite, looking out on some-thing relaxing even if not a small garden feature.
On Wednesday I visited HC2014. Having the week off and with the event literally on the doorstep (London in 2015) it was very convenient.
I'd received an email the evening before on the new informatics federation and heard the official announcement in the opening session. My last HC event was 2005, my first 1986 also in Manchester if I remember correctly.
I posted the federation news this morning. On the BCS stand I picked up a copy of the INFORMATICS IN PRIMARY CARE.
This journal is open access. Despite the title and perhaps illustrative of the dependencies within and need to integrate health (and social care) the journal's coverage is broad and inclusive:
We are interested in how computerised medical records can better record the clinical status of patients and can be used to measure the quality, safety and efficiency of health care professionals and organisations – including primary care, hospital, mental health, and social and community care. The scope of the journal also includes integrated care and how genetic data might be used to enhance health care.
Margaret McCartney and Mark Porter ask whether the anonymity of patient records on a new NHS database can be guaranteed?
NHS: Your records:
Using information about the care you have received, enables those involved in providing care and health services to improve the quality of care and health services for all. The role of the Health and Social Care Information Centre (HSCIC) is to ensure that high quality information is used appropriately to improve patient care.
NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address gaps in information. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all. ...
To coincide with the United Nations International Day of Older People on 1 October, the ForAge Grundtvig Multilateral Network is holding a Pan-European Conference to examine trends and developments in learning in later-life and what can be learned from the experience of European initiatives in this field. The programme includes the following topics:
The context for later-life learning in 21st Century Europe and the role of ForAge
Improving the quality of training of those trying to reach potential older learners
The benefits of later-life learning and the supporting evidence
Experiences of other European networks as information sources and influencers as well as providing expert opinion about future actions
Perspectives from international adult education organisations
Emerging issues and the further development of later-life learning
Older learners’ perspectives
Oral and poster presentations of European Projects on later-life learning
Keynote speakers include:
Hungarian Ministry of Human Resources, Department of Social Affairs
Professor Dr László Iván, President of the Hungarian Academy of Elder People
Dr Alan Tuckett OBE, President of the International Council for Adult Education (ICAE)
Dr Michael Sommer, Infonet coordinator, Akademie Klausenhof, Germany
Professor Franz Kolland, University of Vienna, Austria
Special Theme: "Mobile Computing" Guest editors: Edgar Weippl (SBA Research, AARIT, Austria) and Pietro Manzoni (Universitat Politècnica de Valéncia, SpaRCIM) http://ercim-news.ercim.eu/en93/special
Next issue: No. 94, July 2013 - Special Theme: "Intelligent Cars"
Thank you for your interest in ERCIM News. Feel free to forward this message to others who might be interested.
Peter Kunz ERCIM News central editor
------------------------------------------------------------------------ ERCIM "Alain Bensoussan" Fellowship Programme ERCIM offers fellowships for PhD holders from all over the world. The next round is open! Next deadline 30 April 2013 http://fellowship.ercim.eu/
The new fitness for work assessments have been under review. The discussion featured Professor Malcolm Harrington and his final report on the Work Capability Assessment Review and highlighted the humanistic and mechanistic dimensions of this very complex issue (see also the back-to-work programme?). Points raised include:
the impact of certain medications and treatments on an individual's ability to partake in an interview;
the meaningfulness of an appeals process that once won, then sees subsequent recalls;
4/10 appeals are won;
the need to balance decision making and the computer based process, with the former utilising documentary evidence;
people with mental health and cognitive problems may be less able to advocate for themselves.
What troubled me is (the admittedly) single example were a client attending a review was advised not to bring documentary evidence. What this does is to effectively switch OFF three of four care domains: SOCIAL, INTERPERSONAL and (remarkably) the SCIENTIFIC.
What are the purposes to which clinical assessments, tests, reviews can be put? Why do clinicians and the social care team create records?
Relying primarily upon, or being driven by a computer based algorithm makes this a POLITICAL 'exercise'.
As such it will be seen SPIRITUALLY as cold and uncaring.
POLITICAL neglect reinforcing similar neglect and disinterest in the CITIZENRY.
This week, we celebrate open access week – an event aimed at bringing attention to this rapidly emerging form of scientific publication and its ethical imperatives.
Traditionally, knowledge breakthroughs and scientific discoveries are shared through publication in academic journals. Peer-reviewed and highly competitive, careers are made and broken on the number and impact of these publications.
With the complex, long-standing hierarchy of journal ranking, scientific publishing is big business. From a distance, one might assume that scientific publications aim to maximise the dissemination of ideas, break down barriers to science and make knowledge accessible to the masses – but this is not actually the case.
The publication process
When a scientist, whether in the field, the laboratory or the hospital, makes a discovery, she puts her ideas into an academic paper and submits it to a journal. The journal’s editors decide whether it’s relevant to the scope of the publication, and if it is, they (usually) send it on to a small group of the researcher’s peers.
These are other specialists in the field who will read and give feedback on the paper. If they think the work is worthwhile, and they have no changes to suggest (which is seldom), then the paper will be published in a future issue of that journal.
At this point, no one has paid for anything. The authors don’t pay to submit the article, the journal doesn’t pay for the scientists’ work and the peer reviewers are voluntary. Even the editors are often unpaid, unless they can integrate this service into their professional work.
Journals seek remuneration through subscriptions or once-off access fees by the user – often in the order of US$30 per paper. Those of us lucky enough to have an affiliation to a university, or live in Denmark where the government spends many millions on subscriptions for the entire population can access scientific knowledge free of charge.
Open access
Open access publication differs in one very important way from “traditional” academic publishing. Instead of the individual paying to access an article, or buying a subscription, researchers pay for the publication of their work, often out of their research funds.
In the order of US$1,000-$2,500 per publication, this article processing fee is payable when and if the paper is accepted – and it’s routinely waived for researchers from low and middle-income nations. This means that while the editorial and peer review process are the same as above, access to the published work is free forever and available openly (hence, open access) online.
The traditional publishing paradigm can be regressive and exclusive. Think for a moment how it works: I am a researcher, I do research in developing countries. What if I was to go there; take the time, resources, ideas or even blood samples from thousands of local people; take the information back to my university; access all the scientific knowledge I need in order to develop the work; and then publish my findings in journals for which there’s an access fee of one week’s wages for the people involved in my study.
Sure I might be able to send them a copy, but for the vast majority of people in that community, science remains out of reach. Now, these study participants may also have no internet access for open access sourcing, but many now do and at least the barrier to knowledge is not put up by the scientific community itself.
Similarly, in high-income nations, it’s still the wealthy, the highly educated or those at higher-education institutions who have greatest access to the vast majority of published science. How is this just?
And what happens when we add an additional layer of ethical consideration: that these researchers and their work is often is paid for by society, by taxpayers, through public funding. How can we then justify publishing it in academic media inaccessible to the vast majority who paid for it?
We can’t just blame researchers or the research community for this – and we’re not saying that because we’re researchers. Academic performance and assessment, in the large part, is determined by the amount and impact of one’s publications. The older “traditional” journals have greater histories and so researchers are almost coerced into publishing with these journals.
Some good news
The good news is that things are changing. In the first decade of the 21st century, we have seen an explosion in open access publications. During this time, we’ve observed a ten-fold increase in publications (almost 200,000 at 2011) and more than a six-fold increase in the number of open access journals, to almost 5,000.
Things are clearly moving in the right direction, but this impressive number still accounts for only around 20% of all publishing.
Simultaneously, global leaders have acknowledged the ethical dilemmas of our current system and backed open access. The European Union, for example, is currently piloting a project to encourage all EU-funded research to place their results in an open-access repository or publish them in open access journals.
And some nations, including the United Kingdom, Denmark and Australia, are either planning or implementing policies making publication of publicly-funded research in open access journals mandatory.
Research should be about furthering knowledge for all. And there’s no reason why open access publication shouldn’t be routine.
There are also strong economic arguments for investing in a knowledge economy. We are confident that with enough support, we will see more nations, companies and organisations mandating open access publication – a move that’s likely to bring social and economic benefits.
And who knows, maybe we’ll also begin to see the “traditional” academic journals change their business model and one day make knowledge open to all.
Dr Alessandro Demaio is PhD Fellow in Global Health with the Copenhagen School of Global Health at the University of Copenhagen. In addition, he is a Director of the Global Steering Committee for the Young Professional Chronic Disease Network and NCD Action. For The Conversation, Alessandro expresses his own views only. Bertil F. Dorch is currently senior executive adviser to the university librarian at Copenhagen University Library Services (part of The Royal Library, Denmark), and have previously been Head of Center for Research Support Services as well as a research scientist at University of Copenhagen (The Niels Bohr Institute), within the field of astrophysics. Fred Hersch does not work for, consult to, own shares in or receive funding from any company or organisation that would benefit from this article, and has no relevant affiliations.
Last month the HSJ announced plans to integrated health and social care data (July 5th, pp. 6-7). The purpose is specific to support care commissioning, but ...
The related topic of integrated care is a round-robin element of policy debate. It may go quiet for a time, but it is there, needing to be fed in successive governmental and policy turns.
You might reasonably expect that integrated health and social care data, would be a by-product of integrated care. So the fact that data integration remains a 'to-do' demonstrates the patchwork nature of care integration and the many levels by which it can be defined: commissioning, practice (within domain) across care domains, budget, teams - disciplines, service organisations, care and education, public involvement and data.
I hope the integration of health and social care data at the commissioning level might also put data into the hands of clinicians and social care teams - integrated of course!
The local insights that could flow would represent a real, tangible benefit. The news item stresses the potential value for commissioners. There are as ever several caveats:
To what extent can health and social care staff influence the shape of the dataset?
Is it crystallized (centralised) already?
Can the new role for councils in public health finally ignite the GIS torch to illuminate what is really happening in the local community?
It happens that:
data 'integration'
also = data 'orientating'
So - come on policy people, commissioners and managers, don't leave the workforce out of the loop. Staff on the ground are disoriented enough by the relentless pace of change. They need a sat-nav for care. Give them the torch they need.
What is that you say? They don't have the time to critique their (integrated) practice, to formulate their questions. And anyway - they don't have the access or the skills to use the informatics resources, let alone the nous to interpret the data! Well, if that is the case then shame on you.
I do wish I had time to update the intro pages which can be accessed on the h2cm homepage. I've assigned the SOCIOLOGY care (knowledge) domains intro to the public and this includes carers.
In Hodges' model the carer is closer to the policy maker than the 'patient', 'client' - person they care for. This does not make protecting carer's rights any easier. This conceptual proximity to the powers-that-be does not reduce the need for an amplified voice. The focus for tomorrow is Money Matters.
The significant realization many years ago was that carer's actually span all ages. What I have learned over the past two years in my role is that even when a family member goes into residential care, the worry, the caring does not stop.
This past July I heard last minute (dinner time) about Disability Awareness Day which was held locally in Warrington, Cheshire. It was a great day and for people in the NW - and beyond - make a date for 2012 15th July.
