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.

Dear all,
The Fourth International Conference on Social Informatics (SocInfo2012) will be hosted at the EPFL in Lausanne (CH), in collaboration with the team Humanités Digitales@unil (University of Lausanne), on the 5-7 December 2012.

The general co-chairs are Karl Aberer, School for Computer and Communication Science, EPFL, Switzerland and Andreas Flache, Director of Studies, Department of Sociology, University of Groningen, The Netherlands.

The call for papers is open until the 7th of July, the tutorial proposals, Poster/Demonstration Papers and Panel Proposals until the 28th of July.

All information here: http://www.socinfo2012.com

The International Conference on Social Informatics (SocInfo 2012) is an interdisciplinary venue for researchers from Computer Science, Informatics, Social Sciences and Management Sciences to share ideas and opinions, and present original research work on studying the interplay between socially-centric platforms and social phenomena. The ultimate goal of Social Informatics is to create better understanding of socially-centric platforms not just as a technology, but also as a set of social phenomena. To that end, we are inviting interdisciplinary papers, on applying information technology in the study of social phenomena, on applying social concepts in the design of information systems, on applying methods from the social sciences in the study of social computing and information systems, on applying computational algorithms to facilitate the study of social systems and human social dynamics, and on designing information and communication technologies that consider social context.

A special focus of SocInfo'2012 is on how technology can influence social phenomena through better motivation of human agents, through the use of social norms, through better modeling, or through a better understanding of social concepts like trust, credibility, privacy, and fairness. To this end we are especially inviting contributions demonstrating how behavioral theory can be formalized in agent-based models to study social dynamics. It is the expectation that this contributes to a further development of the social sciences with respect to studying and explaining various behavioral dynamics, such as opinion dynamics, social conflict, innovation diffusion, market dynamics, and
crowd behavior. On the other hand, the creation of a coherent social behavioral model that is formulated as an agent system is a prerequisite for further development of socially-centric platforms and for the testing of new algorithms that use social concepts and attempt to realize social goals.
Best regards,

Claire Clivaz, University of Lausanne

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.

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).

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