Personal Health Records: Part II - revisiting Kim and Johnson 2002

Part I continued ...

What Kim and Johnson reveal is a level of transience that can be quite scary in this context. True, electronic health records can be archived and printed, but the latter surely defeats the purpose of the 'e'. Printing undermines the credentials. The virtual landscape presented in part I by checking the current status of these domains highlights the issue of ownership of data in a way that has provoked much debate in social media and the transferability of a person's data - information. If I want to move to another vendor, system, company (however the 'entity' is described) there needs to be standards and a degree of interoperability to facilitate this. 

Next, we have to bow to the notion of a year on the internet compared with 'real time'. M-health was a dream a decade ago. Here is another pressure on the PHR and its family members. A public-facing health record, whatever its nomenclature, must not only be responsive to the public and professional users and the 'total stakeholder community'. Now the record must be responsive according to device: from desktop, to tablet through to mobile phone.

In 2002 the PHR project was set to run and run. It had a slow, strong pulse with speedy recovery after exertion. The PHR looked fit for Olympic^* endeavors.

But then the algorithms set to change personal health care (to fuse ill-health and well-being) suffered a major arrhythmia. The fate of those who became the new PHR frontrunners, the heavyweights no less: NHS's Healthspace, the initiatives of Google and Microsoft suffered the same fate. This post is from 2009:

Self-care in e-space and the need to Impress

Given the changes since Kim and Johnson you have to wonder what the next decade will bring. Whatever there will still be fog, but that just adds to the excitement as we climb the trees. Then we realise that to all of the users of health information systems (remember the user and stakeholders?), whichever TLA is employed, they are all X-HRs by proxy.

Kim MI, Johnson KB. Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association. 2002. Mar-Apr; 9(2):171-180. Selected for inclusion in the IMIA 2003 Yearbook of Medical Informatics. 

 ^*All trademarks acknowledged.

Oxford Drupal 'Education' Camp 22 - 23 June 2012

I have booked a holiday for Friday 22 June because as their website announces -

Oxford Drupal 'Education' Camp is happening!

Venue: St Catherine’s College, Oxford.

I'm hoping to meet people from other Drupal events and specifically from Drupalcamp Cambridge. Although Drupal is far from a dedicated educational platform - either for authoring materials and managing learners / learning - there are many contributed modules that can be adapted and extended.

One of the three papers mentioned last week will be published by an online journal in June. News of the other two must wait, one is an end-of-year prospect. Although an abstract and preparation for the ICN Congress (if accepted!) is a non trivial undertaking, further writing must fit in with future web developments. This Drupalcamp will help bring several threads together.

25th Int. Council of Nurses (ICN) 25th Quadrennial Congress: Equity and access to health care (seeking co-presenters & sponsors)

Copied below is news about the 2013 International Council of Nursing Congress. There are lots of details to follow including the cost of registration. The call for abstracts invites submissions - in ONLY ONE of the following categories:

• Concurrent session: A paper 15 minutes in length.
• Symposium: An 80 minute session with a minimum of three speakers presenting on a single theme from different perspectives. Speakers presenting a symposium must submit a single joint abstract.
• Poster: A visual presentation for display on a poster board.

I plan to submit an abstract but wonder if anyone reading this would be interested in a symposium presentation?

We would each cover our own expenses and so to this end I am now saving, seeking prospective financial support and sponsorship! I would of course be pleased to work with co-presenters in applying h2cm to their work and would relish the opportunity of learning from others.

As per the single joint abstract, the symposium would demonstrate Hodges' model in three nursing disciplines / care contexts, each related to the Congress theme:

Equity and access to health care

If you are interested in this possible adventure please get in touch h2cmng at yahoo.co.uk and then we can explore this further. I am especially interested to work with a student nurse and nursing colleagues working / teaching in a development context.

In February 2011 on the visit to Colombia I came my closest ever - within five degrees - of the equator. Australia would be an amazing journey not only because I have family there, but if in addition to furthering knowledge of Hodges' model I can share the experience with readers.

[This submission was unsuccessful.]

Many thanks
Peter J. @h2cm

Online abstract submission now open for the

2013 ICN Congress

Geneva, Switzerland, 16 April 2012 - The International Council of Nurses (ICN) is pleased to announce the opening of online abstract submission for its 25th Quadrennial Congress and CNR in Melbourne, Australia. Equity and access to health care is the theme of the conference, which will take place from 18-23 May 2013. Instructions for the submission of abstracts and details on the themes to be addressed can be accessed at .... ICN invites nurses and others around the world to share their ideas, research and expertise by submitting abstracts for the scientific programme. The deadline for abstract submission is

14 September 2012.

ICN is in the final stages of developing a rich four-day scientific programme, offering four plenary sessions, including a debate, and 18 main sessions with 54 international speakers confirmed to date. Key subjects for plenary and main sessions include gender equity, the epidemic of non-communicable diseases, the tension between personal and societal responsibility for health, wellness and prevention, the nursing workforce, ethics/human rights, clinical care and patient safety. The Council of National Representatives, ICN’s global governing body, will also convene in Melbourne just prior to the Congress, from 16-19 May 2013.

Key dates for the ICN 25^th Quadrennial Congress and CNR

•      16 April 2012 - Online submission of abstracts opens
•      14 September 2012 - Online abstract submission closes (midnight CET)
•      14 September 2012 - Registration opens
•      1 December 2012 – Notification of abstract acceptance
•      11 January 2013 – Registration deadline for abstract presenters
•      14 February 2013 - Early bird registration closes (midnight CET).

To keep up with all the latest information on the Congress programme and related events, visit the Congress website ...

Personal Health Records: Part I - revisiting Kim and Johnson 2002

When I was at HC2004 or 2005 I was given a copy of the Medical Informatics Yearbook 2003 from the British Computer Society - Nursing Specialist Group stand. Within this volume of key papers for the year April 2001 - March 2002 I found the following:

Kim MI, Johnson KB. Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association. 2002. Mar-Apr; 9(2):171-180. Selected for inclusion in the IMIA 2003 Yearbook of Medical Informatics. 

The paper identified candidate Personal Health Records [PHRs], then developed criteria examining the entry and display of data elements necessary for the PHRs to serve as adequate representations of information. Then in the final third phase a selected group of PHRs were assessed for their functionality and utility (p.370). Of the 12 PHRs assessed I thought it would be interesting to check  their current status (this was a quick visit to the published domains).

Several Personal Health Records 2002 - 2012

Web Site	Record	URL	Findings
Dr. I-Net	My Medical Record	www.drinet.com/	A good start! Still operational domain redirects from original www.aboutmyhealth.com Continues to offer a PHR.
HealthCompass:	Lifelong Health Record	www.healthcompassnet.com	While there are several site using 'Health Compass' the original version was not obvious.
MedicalEdge	Medical Register	www.medicaledge.com/	Domain currently offers support to physicians, so a PHR may be part of a package?
MedicalRecord.com	Your Medical Record	www.medicalrecord.com	This now appears to be a directory to electronic medical records.
MedicData	MedicData	www.medicdata.com/	This does not appear to offer a PHR and the homepage is 'under construction'. It looks like the domain may have a new owner.
Medscape AboutMyHealth	Personal Health Record	www.aboutmyhealth.com/	Now leads to GE Healthcare.
myhealthnotes.com	Personal Health Manager	www.myhealthnotes.com/	Server not found.
PersonalMD	My Medical Records	www.personalmd.com	Retired - leads to: www.eheandme.com/personalmd_announcement.html
TheDailyApple	Health Records	www.thedailyapple.com/	Social networking is vital to well-being but no PHR here.
VistaLink	Health Profile	vistalink.com	Domain for sale.
WebMD	WebMD	www.webmd.com/	Very much alive and kicking commercially, but my health record / PHR not in immediately in evidence.
Wellmed.com	Health Record	www.wellmed.com	This site leads to http://www.webmdhealthservices.com/

Kim and Johnson provide several lessons as a high quality contribution to the medical informatics literature. From the above we see that while we talk about timeliness in terms of the written record, time takes on a series of new meanings when it comes to electronic records, media, commercial companies and clearly the internet.

As I read the paper and reflected on the past decade other things fell into focus. At the end of the day a PHR should be what it says - personal. Reading Kim and Johnson this did not stop them looking at the PHRs from the perspective of doctors and informatics practitioners. There is nothing wrong with this. Although developers and political masters quite rightly seek to engage with the user, espouse usability and user testing - a system is aimed at a community.

If title [personal] follows function [record] and form [electronic] follows function then what do we have?

Don't worry if you're lost, me too (I'm musing again); let's add the fog....

It's crucial to know what's going on over the fence (similarly sometimes it helps to climb a tree). In this case the person in the form of patient is not the only consumer of the information in the record.

This is the point: systems are about a user AND a stakeholder community. Stakeholder is a much maligned word, found on the lips of those seeking to reach and engage remote ('difficult' to reach) community groups. It has a definite role here though.

Every health discipline has its record, that is a professional must. So in effect you have a series of 'X' -HRs. On paper they were - and remain in many cases - a mess. What we should have then is a hybrid health record that depending on the user morphs itself accordingly. But what is the point in pointing to users and stakeholders? Well, conceptually how far is personal from medical (nursing...) and how far again to personality? Add to the mix the question of where patient, well-being and health fit in to the management of long term medical conditions as per the critieria of Kim and Johnson, accurate entry of medicines, medical conditions, lab tests, monitoring ... and you see what is frequently a record breaking task.

This is (or was*) the challenge: to transform something that is generically personal (with the potential contradiction this implies) to something that is personalised as in 'I'.

*Part II to follow.

A research coordination network (RCN) for Digital Societies and Technologies

From: Wayne Lutters Date: 19 April 2012 20:02:13 GMT+01:00
To: "CHI-ANNOUNCEMENTS at LISTSERV.ACM.ORG"

Subject: Sociotech announcement

Hi All,

I'm happy to write that the U.S. National Science Foundation (NSF) is now funding:  "A research coordination network (RCN) for Digital Societies and Technologies".  The focus of the RCN is towards community building for sociotech scholars. This initial funding for this Digital Societies and Technologies RCN will run through December, 2016 in  support of three broad efforts: (1) sociotech community building; (2) planning and piloting shared sociotech resources(heading towards a community cyberinfrastructure) and (3) expanding the breadth, depth, impact and visibility of sociotech scholarship.

The Digital Societies and Technologies RCN and the successful Consortium for the Science of Sociotechnical Systems (CSST) summer research institutes (http://sociotech.net/) serve a similar community of scholars. However, the summer research institute is not a part of the RCN effort - it remains both a vibrant activity and distinct from the RCN.

Beyond sharing the good news, we write to draw your attention to opportunities to participate in events supported by the Digital Societies and Technologies RCN.  Calls for participation in specific events and projects will begin being announced over the coming months and much of the RCN funding is to support workshops of various kinds.  We'll need your help to plan, organize, staff and participate in these!

Feel free to share this news with sociotech colleagues and others.

Sincerely, the RCN steering committee:

Steve Sawyer (PI) (Syracuse), Wayne Lutters (Co-PI) (UM-BC), Brian Butler (Co-PI) (UM-CP), Diane Bailey (Texas), Dan Cosley (Cornell), Tom Finholt (Michigan), Sean Goggins (Drexel) and Andrea Tapia (Penn State).

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!

What really makes us human?

"Remembering is fundamentally recursive,
because it involves inserting a past mental state into the present one."

Michael Corballis, Essay: What really makes us human?, New Scientist, 1st September 2007 p.48-49.

https://www.newscientist.com/article/mg19526196-300-essay-what-really-makes-us-human/

h2cm in the presence of -alities

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

morality     personality mentality   individuality   spirituality intentionality   transcendentality  rationality	dimensionality   causality  functionality logicality   locality   physicality artificiality  materiality  finicality
hospitality   geniality   quality informality     sociability      conjugality practicality  plurality	nationality    feudality  principality  equality  formality  confidentiality brutality  officiality   criminality

Child to adult:

"Yes, but where does reality, aboriginality, universality, proportionality, abnormality, mortality go?"

:Adult to child

Slides: Social Work Action Network SWAN Conference 31 March 2012

Here are the slides from the Social Work in Action - SWAN conference HOPE University in Liverpool 30-31 March 2012. The session was an introduction to the model. I've used the same template and some of the slides from Colombia last year adding a few new ones for this audience and to reflect the SWAN conference themes. The organizers have a copy of my slides which should appear on their site. The keynote session by Professor Danny Dorling from the University of Sheffield and the main speakers were also videoed and will be made available on the SWAN site.

It is a very difficult time for public services, the NHS and social care. This was a fascinating opportunity to witness the POLITICAL care domain as a 'living entity' not as some remote, abstract thing that other people engage in and appears on the news. This year and following ... the stakes are even higher in terms of possible cuts to follow.

Any questions, other opportunities to present Hodges' model please get in touch.

Social Work Action Network SWAN Conference 31 March 2012 Hodges model from Peter Jones

Virtual International Day of the Midwife - start 10.00 5th May New Zealand

Hello everyone

For those of you who do not know me, I am one of the facilitators of the Virtual International Day of the Midwife. This is a free online conference that runs for:

24 hours starting 10.00 5th May New Zealand. 

The conference is designed for midwives and anyone interested in birth. And if you cannot attend, we'll be recording the conference sessions for you to watch in your own time.

I am delighted to announce that the program for the conference is now confirmed: http://internationaldayofthemidwife.wikispaces.com/

Please go to the website above for all information, including how to access the web conference room that we'll be using, as well as practice sessions where you can get one-to-one help with setting up your technology.

You can also follow us on Facebook:
http://www.facebook.com/VirtualInternationalDayoftheMidwife
and Twitter: https://twitter.com/#!/VIDofM

There is also a poster that you can download and print off, in order to advertise this event to your colleagues. Look forward to seeing you at the conference. If you have any queries about the program, or the technology, please let me know or leave a comment on our Facebook page.

regards Sarah
Sarah Stewart

ERCIM News No. 89 Special Theme: "Big Data"

Dear ERCIM News Reader,

ERCIM News No. 89 has just been published at
 http://ercim-news.ercim.eu/

Special Theme: "Big Data"

Guest editors: Stefan Manegold, Martin Kersten, CWI, The Netherlands, and Costantino Thanos, ISTI-CNR, Italy
http://ercim-news.ercim.eu/en89/special

Keynote: "E-Infrastructures for Big Data: Opportunities and Challenges" by Kostas Glinos, European Commission
http://ercim-news.ercim.eu/en89/keynote/e-infrastructures-for-big-data-opportunities-and-challenges

Next issue: No. 90, July 2012 - Special Theme: "Cybercrime and Privacy Issues"
(see preliminary call at http://ercim-news.ercim.eu/call)

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 now open!
Deadline for applications: 30 April
http://fellowship.ercim.eu/

Issue 89 includes:
Performance Analysis of Healthcare Processes through Process Mining
by Diogo R. Ferreira
A-Brain: Using the Cloud to Understand the Impact of Genetic Variability on the Brain
by Gabriel Antoniu, Alexandru Costan, Benoit Da Mota, Bertrand Thirion and Radu Tudoran

Art and Science of Listening: the conceptual antenna

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

Ability to listen to oneself: self-awareness.	A Fractal Antenna
Active listening.  Attending to other(s), searching for meaning. Supporting self-discovery. Awareness of power, powerlessness, hopelessness, hope.	Governments make promises. Do they ever listen?   Some words are powerful by virtue of their slippery, illusory nature: engagement, Rights, freedom, advocacy, Services.

Ever since hearing of catastrophe theory (New Scientist, Open University) in the 1970s, followed by the emergence of chaos and complexity I've wondered about how chaos and complexity affect each of the care domains.

In health and social care we need a conceptual antenna.

Beyond and combining the four domains there is the additional dialogue, that is Spiritual.

Fractal antenna image source:
http://forum.xda-developers.com/showthread.php?t=1045486&page=3