A nice reminder why I did it in the first place, but where is the patient?

On September 8 it was 4 years ago that I founded ICMCC, supported by my first, visionary board members. Medical and care ICT was something I had stumbled upon and knew little about in those days.
After the first 2 years, September 2006, we had a final definition of the word compunetics, thus being the only global organisation dealing with patient-related ICT. Unfortunately, by that time my mentor and ICMCC co-founder Swamy Laxminarayan had passed away and I was diagnosed with a very aggressive form of Non-Hodgkin.
During the past 2 years, ICMCC has developped itself. Our newspage, with an average of 6,000 unique visitors per month, has become an important source of information. Our Record Access Portal is still the only of it’s kind on the subject. Compunetics as a discipline is slowly entering other areas (e.g. behavioural compunetics), our annual conferences have become important meeting points, our proceedings are considered outstanding publications.

However, when you go through the emotional roller coaster that seems to be more or less obligatory after major treatment for a major kind of cancer, it is nice to read an article that reminds you of why you started it all in the first place. Prescription for change, from professor Amar Gupta, published in the Wall Street Journal on 20 October 2008, is such an article.

“In the future, there will be three often overlapping modes of delivering health-care services: services performed in person by humans, services that can be performed by people at a remote location, and services performed by computers without direct human involvement. Offshore outsourcing in combination with a 24-hour work cycle will be appropriate when certain conditions are met — mainly, if the information involved in the task can be digitized, and if workers at different sites can do their jobs independently from one another.”

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Coincidence?

I was invited to speak at the BCS Primary Health Care Specialist Group summer conference last Tuesday, July 1. Due to my medical condition I had to send my speech by video. The conference dealt with sharing and caring and I was asked to look at the international aspects.

Unfortunately I missed Sir Graeme Catto’s address,  but already had an inkling of what he was going to say from his speech at our annual ICMCC event a couple of weeks ago.

In my speech at the PHCSG I mentioned the fact that already in 2004 the European Commission told me that in 2008 I would have my EHR available accessible across the border when travelling. Which I doubted:

Four years ago, a high official of the European Commission told me that by 2008 it would be possible for me to be on vacation in Portugal and my Dutch EHR could be viewed by a medical professional in case something should happen to me. I told him that I did not agree with that vision. Technically we might be able to do so in four years time, but due to the fact that in 2000 the European Union had decided that health is a national affair as well as the fact that we still had immense ontological problems to overcome, I didn’t expect it would happen.

To my amazement, one day later, the European Commission aims for borderless electronic health records.

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Sharing and Caring, PHSCG Conference, 1 July 2008, Chesford Grange, UK

More details on the conference.

View the speech.

Ladies and Gentlemen,

First of all I would like to thank the organisation and Dr. Amir Hannan for inviting me to address this conference.
Secondly I apologize for not being here myself.

This conference deals with sharing and caring and I was specifically asked to highlight the international aspects.

ICMCC introduced 4 years ago the word Compunetics and we were the first to link it to healthcare. Compunetics defines the social, societal and ethical aspects of the use of computing and networking. So we already realised the importance of these issues before Web2.0 and Health2.0 appeared on the horizon. The use of the word compunetics directly and urgently implicates the patient as one of the main focussing points of our foundation. More specifically we concentrate on awareness and information supply. To serve the patient in the best way, we also have to concentrate on the health professional.
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Bridging Radiology and Public Health: The Emerging Field of Radiologic Public Health Informatics

“Radiology and public health have an emerging opportunity to collaborate, in which radiology’s vast supply of imaging data can be integrated into public health information systems for epidemiologic assessments and responses to population health problems. Fueling the linkage of radiology and public health include (i) the transition from analog film to digital formats, enabling flexible use of radiologic data; (ii) radiology’s role in imaging across nearly all medical and surgical subspecialties, which establishes a foundation for a consolidated and uniform database of images and reports for public health use; and (iii) the use of radiologic data to characterize disease patterns in a population occupying a geographic area at one time and to characterize disease progression over time via follow-up examinations. The backbone for this integration is through informatics projects such as Systematized Nomenclature of Medicine Clinical Terms and RadLex constructing terminology libraries and ontologies, as well as algorithms integrating data from the electronic health record and Digital Imaging and Communications in Medicine Structured Reporting. Radiology’s role in public health is being tested in disease surveillance systems for outbreak detection and bioterrorism, such as the Electronic Surveillance System for the Early Notification of Community-based Epidemics. Challenges for radiologic public health informatics include refining the systems and user interfaces, adhering to privacy regulations, and strengthening collaborative relations among stakeholders, including radiologists and public health officials. Linking radiology with public health, radiologic public health informatics is a promising avenue through which radiology can contribute to public health decision making and health policy.”
Abstract
Daniel J. Mollura, John A. Carrino, Diane L. Matuszak, Zaruhi R. Mnatsakanyan, John Eng, Protagoras Cutchis, Steven M. Babin, Carol Sniegoski and Joseph S. Lombardo, Journal of the American College of Radiology, Volume 5, Issue 3, March 2008, Pages 174-181, doi:10.1016/j.jacr.2007.08.020

The Healthcare Challenge

Last week the US National Academy of Engineering (NAE) has declared Health informatics as one of the grand engineering challenges of our time.
They list a number of aspects that are part of that challenge, to start with interoperability and medical records. Their next comment is on the availability of information to professionals: “Doctors suffering from information overload need systematic electronic systems for finding information to treat specific patients and decision support systems to offer “just in time, just for me” advice at the point of care“. This sounds very much like the inventories and knowledge centres ICMCC has been focusing on during the almost 4 years of its existence.”
Article
Lodewijk Bos, ICMCC Blog, 20 February 2008

The Healthcare Challenge

Last week the US National Academy of Engineering (NAE) has declared Health Informatics as one of the grand engineering challenges of our time.
They list a number of aspects that are part of that challenge, to start with interoperability and medical records. Their next comment is on the availability of information to professionals: “Doctors suffering from information overload need systematic electronic systems for finding information to treat specific patients and decision support systems to offer “just in time, just for me” advice at the point of care“. This sounds very much like the inventories and knowledge centres ICMCC has been focusing on during the almost 4 years of its existence.
Monitoring information is mentioned next as one of the tools to improve healthcare. I should have been presenting at the German KIS meeting today, but due to medical problems I was unable to attend. I was supposed to talk about “Mobile devices from a patient viewpoint” and one of the issues I wanted to raise was the fact that these devices should be unobtrusive, easy to handle and if possible self-explanatory. The NAE even completely focuses on micro technology and interoperability once more is a key element: “Seamlessly integrating the input from such devices into a health informatics system raises the networking challenge to a new level“.
In the next part of their declaration the focus changes to public health emergencies, firstly the environmental monitoring to signal possible chemical and biological attacks, followed by a large chapter on disease surveillance to tackle pandemics, one of the other focussing points in the ICMCC history.

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A method to map heterogeneity between near but non-equivalent semantic attributes in multiple health data registries

“Health registries from multiple jurisdictions often include terms that are assumed to be semantically equivalent (e.g. fetal death and stillbirth). Closer examination reveals that such attributes have near — but non-equivalent — semantics. Thus their degree of semantic heterogeneity is an important indicator of uncertainty associated with data integration between registries. We build an OWL-encoded ontology which formalizes the relationships between similar perinatal concepts found in different databases. We also introduce the concept of ontology-based metadata as a means of contextualizing such terms and linking context to the attribute data. This extended metadata are exported as XML from the health registries, and it — along with the OWL ontology — is interfaced via a web-based GUI accessible to health researchers. The GUI mapping serves as the basis for making ad hoc comparison and integration decisions. Uncertainty is addressed by precisely mapping semantic heterogeneity between fields.”
Abstract
Nadine Schuurman and Agnieszka Leszczynski, Health Informatics Journal, Vol. 14, No. 1, 39-57 (2008), DOI: 10.1177/1460458207086333

Ten Theses on Clinical Ontologies

Stefan Schulz and Holger Stenzhorn
Department of Medical Informatics, Freiburg University Hospital, Germany

Abstract.

We present ten principles for clinical ontologies that describe the authors’ opinion about what should be understood by the notion of clinical ontologies and what not. In contrast to clinical terminology systems, clinical ontologies are considered to be semantic reference systems and for that – first of all – strive to account for the properties of the domain entities themselves and their proper formal definitions – rather than just linking clinical terms together.

A Standard Ontology for the Semantic Integration of Components in Healthcare Organizations

I. Román, L.M. Roa, G. Madinabeitia and L.J. Reina
Group of Telematic Engineering; Biomedical Engineering Group; Dept. of Signal Theory and Communications, University of Seville, Spain

Abtract

In this paper we introduce an ontology that covers all the terminology involved in the ODP standard. This ontology has been extended with concepts taken from the prEN12967 in order to apply it in the healthcare domain. Describing components formally and using this ontology, their semantic integration can be eased together with the benefits derived from the assistance to the automatic discovery, selection, invocation and composition of components facilities.