RCN Congress: Ebola, privacy and 'care bundles'

The first discussion at RCN Congress #RCN26 on Nursing as a STEM profession, or STEAM, with the arts added, became a resolution:

https://www.rcn.org.uk/congress/congress-events/nursing-as-a-stem-profession-2026

This was marvellous as it touched so many aspects that Hodges' model readily encompasses.

There is scope for the addition of emergency items:

https://www.rcn.org.uk/congress/Submit-an-emergency-agenda-item

Yesterday I wondered about the latest ebola outbreak, national and international aid^. Plus, privacy, having noticed a stream on twitter regards the NHS and a contract with Palantir. Yes, 'X' as a source is a problem, but concerns about access to confidential clinical information is found in the quality press. What does the Information Commissioner's Office say? Well, it seems there is a history:

https://icosearch.ico.org.uk/s/search.html?collection=ico%7Esp-search&query=PALANTIR&profile=_default

While searching for 'care bundles' I came across this:

 'The scope and force of medical privacy is further supported by a secondary layer of protections based in sectoral and other forms of regulation. Anti-discrimination laws, disability rights, and employment law, for example, all recognize and operate to preserve medical privacy by restrictions of use of medical information outside of the medical setting. 

 These intersecting normative strands of medical privacy, derived from different sources, together form a set of norms designed to protect a bundle of interests that is essential to the maintenance of an effective healthcare system that encourages and protects appropriate care-seeking and treatment. Whether and how technological changes in the collection, storage, and processing of data affect the construct of medical privacy is a pressing question. Just as a bell cannot be unrung, erosion of the sphere of medical privacy is unlikely to be restored.' p.330.

I realised over the past twenty years or so I've paid less attention to the fact that sections of a population, those often most in need of healthcare will not engage, be care-seeking - if they have no faith and trust in how their information is managed and protected. Minority groups, the digitally excluded (whether by choice, or literacy, economics) the influence of media are all vulnerable. Protection of data and the integrity of health services and systems is surely a matter of professional import both clinically and informaticians? As a registrant, I've always put it to student nurses that they should be aware of what happens to the data they as a registered nurse, enter in the electronic health record.

Pierce, R. (2018). Medical Privacy: Where Deontology and Consequentialism Meet. In B. van der Sloot & A. de Groot (Eds.), The Handbook of Privacy Studies: An Interdisciplinary Introduction (pp. 327–332). Amsterdam University Press. https://doi.org/10.2307/j.ctvcmxpmp.17

 

^What, only one sentence? Yes, but I'm still worried; geography - distance now matters little. While, on the other-hand: care-seeking...?

 

Previous posts: 'ebola' : #RCN26

Exhibition: Manchester (and online) “Our Lives, Our Privacy” c/o ICO

This a.m. I heard on BBC R4 Today 07.41.30... news (and interesting discussion) -

https://www.bbc.co.uk/sounds/play/m0029rg4

- of an exhibition in Manchester that may be of interest, if you're local, but it is also accessible online:

https://ico.org.uk/about-the-ico/media-centre/news-and-blogs/2025/04/come-and-visit-manchester-s-latest-exhibition-our-lives-our-privacy-to-celebrate-the-ico-s-40th-anniversary/

Our Lives, Our Privacy

'A digital exhibition featuring 40 items that tells the tale of how privacy has been at the centre of some of the biggest events and milestones we remember over the past four decades was launched last Autumn, but now a physical exhibition has come to Manchester. 

From 2 April to 30 June, we will be displaying the exhibition at Manchester Central Library in the first-floor exhibition space. Members of the public are welcome to pop in and see the items that have shaped our lives and our privacy.  

 

The ‘Our Lives, Our Privacy’ exhibition highlights poignant events in history including the launch of social media, the News of the World phone hacking scandal and the Covid 19 pandemic to name a few. It also looks at technological advancements like smart devices and raising questions about the future, including how accurate the episodes of ‘Black Mirror’ really are.'

==== Previously:

Jones, P. (1996) Humans, Information, and Science, Journal of Advanced Nursing, 24(3),591-598.
https://www.academia.edu/3555654/Humans_information_and_science

Jones, P. (1996) An overarching theory of health communication? Health Informatics Journal,2,1,28-34.

Jones, P. (2004) Viewpoint: Can informatics and holistic multidisciplinary care be harmonised? British Journal of Healthcare Computing & Information Management, 21, 6, 17-18.

Fryer, Jon. “Information Literacies – Learning, to Thrive in a Digital Age” IRMS Bulletin 230 (2022): 16-21.

As listed in the bibliography in this blog's sidebar.

I visited Manchester Central Library about two weeks ago, it is quite a building and full of public, cultural, and local information resources. Must do likewise in Liverpool.

Records Management Journal - Editor Opportunity

 All

After nine years in post, I am stepping away as a Co-Editor of the Records Management Journal. My colleague Sarah Demb has also recently completed her term. A double issue on recordkeeping and the law is about to land and we have a strong series of articles for next year. We are therefore advertising the opportunity for someone to take forward this important Journal which contributes in research and practice, and does publish content globally. The role of Editor provides a first hand opportunity to lead and network in this field, positioning special themed issues and ground breaking research. The work is supported by its strong Editorial Board.

The full advertisement is at:

https://www.emeraldgrouppublishing.com/journal/rmj/records-management-journal-rmj-searching-a-new-editor-chief-or-co-editors

I am very happy to answer any further enquiries.

Kind regards

Elizabeth

Dr Elizabeth Lomas, FRSA, FIRMS, FHEA, FRHisS

Associate Professor in Information Governance

G43, Foster Court

Department of Information Studies

University College London

Gower Street

London WC1E 6BT U.K.

Email: e.lomas AT ucl.ac.uk

My source: RECORDS-MANAGEMENT-UK list.

125 Years: 1899-2024 Free Issues at Liverpool University Press

2024 marks the 125th anniversary of LUP’s formation and we are pleased to bring you a new selection of free to read journal issues to celebrate.

With one complete issue of each journal available to read for free, this collection captures the breadth and scope of the research that our journals publish, and the growth of LUP from its formation in 1899. We hope that you enjoy reading them.

Visit our Free Issues page to read free content Indexing and Archiving.

Issues included this year

THE INDEXER

In this issue, 39.1, Paula Clarke Bain touches on the experience of reading during a pandemic in her review of Piranesi by Susanna Clarke, alongside a final article from a series on active eBook indexes. Gord Ripley and Gordon Adshead offer a tour of their online index database, Libris Canadiana, whilst Peter Rooney discusses the creation of an index for the Mueller report, a highly anticipated US government document that was published without an index. Ælfwine Mischler also explains the complexities of indexing Arabic names, and Walter Greulich continues his series about how to create embedded indexes using Word and, Pilar Wyman reports on the project updating indexing standards in the US.

Read this issue for free >

ARCHIVES

In this issue, 56.1, C.R.J Currie article discusses tenants’ copies of court rolls in England and Wales before 1400 using research in 38 repositories to analyse 176 copies of seigneurial court rolls, whilst Rory MacLellan analyses a new set of First World War diaries for the Mesopotamia campaign. Mathodi Freddie Motsamayi looks at preserving South African community archives in a context of Ubuntu alongside book reviews by Russell E. Martin, J.P. Salley, Christine Jackson, Tracey Logan, Karen Mailley-Watt, and Arike Oke.

Read this issue for free >

COMMA

In this issue, 2019.1, discusses the remarkable work of Charles Kecskeméti, head of the secretariat of the International Council on Archives (ICA) for 41 years, from 1957 to 1998, alongside Mandy Banton who explores the problems and solutions of shared archival heritage, reporting on the EGSAH panel at the Yaounde Conference. Wang Xiangnyu and Han Jiabao also undertake research on celebrity archives held by provincial archives in China, whilst Joan Boadas i Raset discusses the management of photographic heritage.

Read this issue for free >

Browse the full collection of free to read issues for 2024 >

Best wishes,
Alice Burns
alice.burns AT liverpool.ac.uk

On behalf of Liverpool University Press

My source:

https://www.jiscmail.ac.uk/cgi-bin/webadmin?A0=RECORDS-MANAGEMENT-UK 

Ear of Dionysus :: Ear(s) of a Mental Health Nurse*

c/o Archaeological Park of Neapolis

INDIVIDUAL

|

     INTERPERSONAL    :     SCIENCES               

HUMANISTIC --------------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

|

GROUP

Interpersonal Communication Skills Active listening	Ear of Dionysus - Syracuse, Peter Jones 29th Sept 2023
The Socio-Politics of 'information'	Secrets, States and Power

Ear(s): we all need to listen; not just in stereo but quadraphonic.

https://www.italia.it/en/sicilia/siracusa/cultural-places/neapolis-archaeological-park

Shining a light on Dark Patterns

 INDIVIDUAL

|

 INTERPERSONAL    :     SCIENCES               

HUMANISTIC --------------------------------------  MECHANISTIC      

SOCIOLOGY  :   POLITICAL 

|

GROUP

PERSONAL DATA^	PERSONAL DATA DATA, DESIGN BIOMETRICS^ PERSONAL DATA  DARK   PATTERNS
PERSONAL DATA*	CONTROL TECH GIANTS TRANSPARENCY LAW CONSUMER PROTECTION ...

*And the data of family members.
^Data that is specific to an individual, organic, can include fingerprint, facial images, DNA, behaviours (including keyboard use, online).

Prompt: Mention of 'dark patterns' on BBC World Service promoting their tech coverage.

Previously: 'interface(s)'

IRMS Conference 2022 - RESILIENCE RECOVERY RENEWAL

  

Information & Records Management Society (IRMS)
RESILIENCE RECOVERY RENEWAL

15th-17th May 2022, Glasgow - Doubletree by Hilton

The annual IRMS Conference is *the* go-to event in the information management calendar, bringing together 400 practitioners, compliance managers, senior executives and others from a range of organisations across all industry sectors in the UK and beyond.

Our theme for 2022 is Resilience, Recovery, Renewal, recognising the phases of individuals' and organisations' response to the effects of the global pandemic, and the critical role of information and records management in enabling and supporting business continuity.

More details ... 

 

n.b. See you on the 17th? PJ

"Making legal advice a clinical department" Dept of Clinical Law

individual

|

INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

|

group-population

	Definitions: Child in England and Wales < 18 years of age
"Changing views in society have pushed...	"Making legal advice a clinical department"  'child' : 'adult' mental capacity, deprivation of liberty, candidness and forethought, end of life decisions, treating physical illness in the mental ill, consent, confidentiality and treatment refusals (p.20) ... legal considerations of patient rights to  the front of clinician's agendas"

Wheeler, R., & Marsh, M. (2016). Making legal advice a clinical department. Health Service Journal, April 13, 126: 6482, 20-21.

Healthcare: theDataMap [subjects, agents & agencies] c/o Harvard University

individual

INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

group

*person* patient, self, client	physician, nurse, allied health professional, social worker...
(experiential)  public health,  carers	payer, insurer, provider, government, tax payer, (corporate social responsibility)

theDataMap - Copyright © 2012-2013 President and Fellows Harvard University

Privacy: Open Data, Individual and Group

The vertical axis of Hodges' model is the individual - group, or self through to collective. Health and social care constantly negotiates this from the ideals and delivery of person-centred care to public mental health. So often for health professionals the emphasis is on the individual, the person's care needs, their strengths, their rights, outcomes and feedback on care received. The same individual focus is also ascribed to records and information. Protection of data, maintaining confidentiality is an essential duty of health care  professionals.  

Earlier this year the government's care.data scheme was placed on hold. 'Open' is the way of the world: open access, open source, open data and open government. Increasingly the group as an entity needs to considered in what may be a new way, as Floridi writes:

The idea that groups may have a right to privacy is not new, and it is open to debate, but it has not yet received all the attention it deserves, although it is becoming increasingly important.

 ...

Open data is more likely to treat types (of customers, users, citizens, demographics population, etc.) rather than tokens (you, Alice, me), and hence groups rather than individuals. But re-identifiable groups are ipso facto targetable groups.It is therefore a very dangerous fallacy to think that, if we protect personal data that identify individuals, the protection of the groups will take care of itself. p.23.

Luciano Floridi. Group Privacy. The Philosophers' Magazine. Issue 65, 2nd Quarter 2014. pp. 22-23.

Here is a related book (on my list) a BMJ award winner:

The Private Life, Josh Cohen:
https://granta.com/products/the-private-life/

The war over private life spreads inexorably. Some seek to expose, invade and steal it, others to protect, conceal and withhold it. Either way, the assumption is that privacy is a possession to be won or lost.

But what if what we call private life is the one element in us that we can't possess? Could it be that we're so intent on taking hold of the privacy of others, or keeping hold of our own only because we're powerless to do either? ...

Better information means better care

BBC Radio 4: Inside Health 21 January 2013

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.  ...

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

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

individual

my interests	scientific interests
social interests	commercial interests

group - population

Dame Fiona Caldicott to lead Confidentiality Review

Dame Fiona Caldicott has agreed to lead an independent from Government review of the balance between protecting patient information and its sharing, to improve patient care.

The Department expects to respond to the panel’s recommendations when the review publishes during 2012.

The recommendation for a review of the balance between protecting patient information and its sharing, to improve patient care was part of the Future Forum’s recommendations to Government on the modernisation of health and care.

... more.

My source:
IHTSDO CoP

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/

Proximity: Relationships, Records, e-Health - Person-centredness near and far

When data protection and confidentiality is debated "the need to know" is often wheeled out as a rationale for access to personal identifiable data.

See the following:
NHS Confidentiality Consultation - FIPR Response (esp. #18).
DoH, Confidentiality, UK

In addition, if I need to access the record of patient held at hospital 'x' from hospital 'y' what is the health care relationship that prompts and justifies this need?

At present visiting nursing and care homes, you go knowing that data capture and recording (care assessment) is a fundamental requirement. Having a secure laptop for community has long been promised. While tech solutions are available and implemented elsewhere, my lack of such technology prompts me to imagine a future visit. ...

Pulling up at the nursing home I walk up the drive, ring the bell. While I wait the new tablet device in its bag has already introduced itself to the home. As I am allowed in - my identity assured - the tablet continues its dialogue, it:

1. Downloads and updates existing active client data.
2. Downloads additional data as per the agreed dataset on the new referral.
3. Checks on items 1-2 with a review of recent prescribing for key psychotropic medicines.
4. It checks the most recent NICE, Cochrane evidence and reconciling the local care knowledge. (This may seem excessive at present, but come personalised medicine this will be crucial).
5. Will check on most recent clinical reviews and due dates.
6. The h2cm template is there ;-) ready to present the care domain summary for the general physician ... and possibly (roles?) the next care professional to visit this home and this resident.

The significance of relationships is usually denoted by distance. Personal space is rather obviously spatial. This is how we recognise (well one of the ways!) the meaning and significance of an intimate relationship. In care situations with individuals who are confused and potentially aggressive we are conscious of the need to have due regard and respect for that person's personal space. Spaces and boundaries have to be negotiated in a variety of ways and means. 

Health information technology has already made effective use of role-based access to systems. If we take person-centred care to the nth degree, proximity can also count as it does in mobile health (m-health). Whilst to effect a role is to be in a certain location and context (sat at the office PC in the hospital) roles are organisationally and politically defined. Proximity is also contextual and situated in other ways, my proximity to:

• the nursing home;
• the individual's room;
• the individual themselves.
• (and their relatives)

While telecare / informatics can deliver a dividend in remote care, it is essential that it can also demonstrably support person-centred care. The best way (clinically assured) to do that for many activities is person-to-person contact. Just because one-side of the relationship may not recall the encounter as little as five minutes after, does not mean that there is no value in sustaining the ring of the bell, the exchange of s-miles, the record that results and other background conversations.

Image source:
Gestalt - proximity
http://graphicdesign.spokanefalls.edu/tutorials/process/gestaltprinciples/gestaltprinc.htm

NHS data breaches: the 'cogeography' of who and where?

Computing this past week featured an item (extract below with link) -

Five more NHS trusts involved in serious data breaches
Written by Tom Young
Computing, 17 Jul 2009

Privacy watchdog the Information Commissioner's Office (ICO) has found five more NHS organisations in breach of the Data Protection Act.
The Royal Free Hampstead NHS Trust reported the loss of an unencrypted CD initially thought to contain medical treatment details of 20,000 patients from the hospital’s cardiology department.
Chelsea and Westminster Hospital Foundation Trust reported the theft of an unencrypted memory stick containing 143 patient details including sensitive medical information.
And Epsom and St Helier University Hospital NHS Foundation Trust has been storing hospital records insecurely for nearly two years following data being transferred between hospitals. ...

Straight away reading this I thought of my previous post about cogeography and commented accordingly (which registered twice - oops!). In light of the previous post here's that comment with some additions....
Such events merely (without trivializing) highlight the human capacity to ERR big(gish) time. Is it not possible for tech to help? If info systems through to mobile devices had a sense of where they are and their status as carrying sensitive data recognised through digital IDs - plus additional meta-dynamic data, then 'cogeographic awareness' might result?

I blogged about this with ref to conceptual spaces.

This would be an artificial example and would make it possible for data previously designated as confidential, sensitive, - HOT data if you will - to self-destruct, 'e-vaporate' if it found itself beyond a given combined virtual or physical environment be that hospital, Trust boundary, SHA, or National border...? This capability already exists no doubt in the security services (although sometimes you wonder) or as suggested in the realms of 'MI' and '007'.

Cogeographic or (cogneographic) may be a neologism and seeks to conjoin the cognitive (cognition) involved in defining, representing and using concepts in conceptual spaces; AND the finding that knowledge is invariably situated - that is knowledge has a geography.

Copies of NHS and social care
data could - should - MUST
have a geography too...?

Another comment rightly questioned the ability to put personal data on
CDs and other media in the first place. Amid the emergence
of renewed debate about the future of e-health
records, clinicians may have a professional
duty to demand cogeographic
properties no
less ...?

Image source: http://www.tapintoquality.com/facts/glossary-d.html

Happy Anniversary 20th July!

(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/

Research Capability Programme NHS UK - consultation

From: The NHS-HE CONNECTIVITY PROJECT Forum - Malcolm TeagueSent: Thursday, 30 October, 2008 16:42:25
Subject: Research Capability Programme - consultation

Consultation on the wider use of patient information

I attended a briefing event on the Research Capability Programme yesterday in Birmingham which was very informative and excellent progress is being made. It was mentioned that the researchers view was under-represented at the moment in the consultation on the wider use of NHS data eg for clinical research. Researchers currently represent only 2% of the responses. But I have just completed it as an NHS user which was the category that best fitted, so everyone can take part. It also takes you through the scenarios gently step by step. Anyway it would be great if you could encourage as many colleagues to take part as possible at:

Formerly:
http://www.connectingforhealth.nhs.uk/systemsandservices/research/consultation

There were a series of RCP briefing events so some of you may already have attended elsewhere. The presentations are going to be made available so I will endeavour to pass those on in some way later. The NHS-HE Forum got a positive mention from Sir Alex Markham!

Many thanks,

Malcolm