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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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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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ICMCC Event 2008 Program

The preliminary program of the ICMCC event 2008 has been announced.

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Immunizations: The First Step in a Personal Health Record to Empower Patients

Abstract:
Despite the promise of better health care through information-centric patient empowerment, little progress has been made. The issue is not that the data do not exist in a useable form, nor that technologies are lacking that would enable access to this information. There are two primary challenges standing in the way of patient empowerment: (1) in the private sector there is no proven revenue model for providing this access and (2) in the public sector the standard argument is confidentiality of information. The lack of a priority by either private or public health providers to empower individuals will lead to these initiatives being consumer driven. Access to immunization records through health informatics and supporting compunetics presents an easy-win opportunity to significantly empower individuals with their own health information.
Scientific Technologies Corporation (STC) has been implementing and supporting immunization registries in North America for over fifteen years. As the leading expert in this area, STC has developed a process for achieving successful large-scale access to personal immunization records with minimal investment. As a first step to empower individuals with on-line access to their immunization records, the STC approach leverages the technical frameworks established for health insurance and 3rd party payer environments linking to statewide immunization information systems. The individual is provided access to their records through their insurer’s health portal. This is populated through electronic exports of member immunization records as retrieved from state or provincial registries that contain provider-supplied patient records, allowing individuals to utilize these hosted services or download their provider administered records into their personal health record.
Individuals have the ability to review their immunization and their family immunization histories. They have the ability to know when an immunization is due, where vaccines are available, and which vaccines minimize risks to disease. For the emerging industry of on-line personal health records, a patient’s immunization record will be the single most important factor to demonstrate success for patient empowerment. It will create a roadmap to support the inclusion of other medical information.

Michael L. POPOVICHa, Jeffery J. ARAMINIb, Michael GARCIAa
a Scientific Technologies Corporation, Tucson, USA
b Scientific Technologies Corporation, Ontario, USA

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

Tagged: , , , and ; posted on Saturday, March 29th, 2008 at 5:49 pm
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The Safe Implementation of Research into Healthcare Practice

Abstract:
Miscommunication, misunderstanding and outright error have all played significance roles in triggering Adverse Events across the spectrum of health care delivery. As a means of countering these effects this paper outlines a twin track approach. This firstly focuses on developing a care pathway modelling approach both as the basis for better understanding of interdisciplinary process interaction, and also as a means of rapid access to relevant clinical knowledge. This is then set in the context of the human behavioural issues that can all too easily prejudice patient safety. It also explores the potential to apply the large body of knowledge and experience in risk management techniques applied to life critical decision taking under high stress conditions.

Bryan MANNING and Stephen BENTONb
University of Westminster, School of Informatics and Centre for Business Information, Organisation, and Process Management, Westminster Business School
b Business Psychology Centre, University of Westminster, Department of Psychology

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008.

Tagged: , , , and ; posted on Saturday, March 29th, 2008 at 4:05 pm
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Sessions Overview (ICMCC Event 2008)

ICMCC Event 2008

Papers are published in the proceedings in the Medical and Care Compunetics 5, Studies in Health Technology and Informatics by IOSPress

National and Regional Projects
Aspects of Electronic Health Records
European Projects
Knowledge Management
Platforms
Behavioral Compunetics
Empowerment
Personal Health Paradigm Challenging Citizens and Patients
Empowering Disabled People with ICT Tools

National and Regional Projects

Aspects of Electronic Health Records

European Projects

Knowledge Management

Platforms

Summary by session chair M. Popovich.

Behavioural Compunetics

Empowerment

Personal Health Paradigm Challenging Citizens and Patients

organised by Prof. Bernd Blobel
Special Session organised by the European Federation for Medical Informatics, Working Groups “Electronic Health Records” and “Security, Safety and Ethics”

Empowering Disabled People with ICT Tools

organised by Prof. Giuseppe Tritto, President of the WABT (World Academy of Biomedical Technologies)

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Call for Papers ICMCC 2008

The call for papers is closed.

For its fifth annual event, ICMCC will focus on the power of information. Information is both the result of data put to use and, once combined with experience, the basis of knowledge. If used properly it can empower patients, both actively and passively.
Information is one of the primordial aspects of medical and care compunetics, the field of social, societal and ethical aspects of computing and networking.
Therefore information related aspects will be at the core of the 2008 event program and this call for papers.

The main themes of the conference are:

  • Electronic Health Record (EHR) Approaches
  • Patient Record Access
  • Compunetics (Social, societal and ethical issues of ICT)
  • Data- , Information-, Knowledge Management

Authors are encouraged to focus their contributions from a patient’s perspective.

Accepted papers will be published in “Medical and Care Compunetics 5″ (IOS Press - “Studies in Health Technology and Informatics”) available at the conference.

Click here for author guidelines.

Papers can be sent as mail attachments to 2008 [at] icmcc [dot] org mentioning “Event paper” in the subject line before February 18, 2008.

The following is a non-restrictive list:

Electronic Health Record (EHR) Approaches

  • EHR solutions and their comparison
  • National and regional EHR strategies
  • EHR data quality criteria, quality evaluation schemes and consequences of an insufficient data (and information) quality management
  • Personalization of EHR
  • EHR vs. PHR - should there be a split up?
  • Urban and rural aspects of EHR and access to such EHR
  • Security, safety and privacy aspects for access control systems (authentication, authorisation, authenticity, integrity, confidentiality, accountability)
  • Record summaries (subset, extract) vs. comprehensive record structures
  • Linking to additional (health-related) information (lifestyle, wellness; linkage tokens and mechanisms
  • Storage and storage system access (central, de-central, local, distributed, private)
  • Long-term archives and self-management of stored information including data management
  • Existing and emerging standards for EHR architectures
  • Aspects of ownership of EHRs and EHR systems
  • Empowerment of health professionals towards extended ICT use

Patient Record Access

  • Active patients accessing generic record structures
  • Access rights handling (read, write, create, update, lock, delete; clinicians, nurses, patients)
  • Access systems (kiosks, internet, cards, sticks, devices)
  • Benefits of permanent record access (for patients and clinicians, economic aspects, cost-benefit-relationship, impact on health, impact on treatment, impact on recovery, health outcome)
  • Legal and ethical aspects of accessing records (e.g. 3rd party information, parental access)
  • Social aspects of accessing records (especially access by (mentally-)incapacitated and (physically-)disabled persons and 3rd party access)
  • Training / further education and eLearning aspects for useful and usable record access (health professionals, patients, relatives)
  • Relevant standards inside and outside the healthcare and welfare domain
  • Record Access policy and use (national, EU, USA, WHO)
  • Critical issues and issue resolution
    • Errors (e.g. patient and clinician agree the data is wrong)
    • Conflicts (one of the patient or clinician feel the data is wrong)
    • Disclosure (The patient and clinician disagrees with the level of disclosure or sharing)

Compunetics

  • Role of compunetics in treatment and after-care
  • Role of compunetics in information gathering and dissemination
  • Role of compunetics in quality management
  • Community and individual engagement through health IT
  • Use of ICT to make protocols more adaptable, more patient-specific and more safe
  • Modeling concepts
  • Patient behavioral aspects

Data- , Information-, Knowledge Management

  • The links and dependencies between data, information, knowledgement
  • Use of secondary data for different purposes (incl. scientific studies)
  • Orphan diseases
  • Disease surveillance and surveillance systems
  • Management of (anonymous) EHR data to provide information to the patient
  • Anonymization and pseudonymization as challenge to information systems
  • Storage of Patient data:
    • where
    • How long
    • Costs
    • Use and sharing policies and who maintains those

Tagged: , , , , , , , , and ; posted on Friday, February 1st, 2008 at 9:41 am
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ICMCC Blog

ICMCC’s president Lodewijk Bos starts today a regular blog on the ICMCC website.

In his first entry he expresses his wishes for the New Year:

  • We would like to invite you, wherever you are in the world, to send us links to interesting articles (news as well as scientific) concerning medical and care ICT in your region or country or in your professional area.
  • Much research is done all around the world especially by university institutions and their students. However, outside their own faculty community, hardly anybody knows what they are doing. This is one of the main causes of the reinvention of the wheel as far as research is concerned. ICMCC would like to offer its website as a presentation platform for these university schools to tell us about their past, present (and maybe future) work.
  • Create “knowledge centres” like the one on Record Access, on the use of compunetics in other medical and care areas.

New Year’s wishes

Tagged: ; posted on Tuesday, January 8th, 2008 at 10:52 pm
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My New Year’s wishes

This is my first blog entry on the ICMCC website.

And I would like to start by expressing my joy about the large number of visitors to our site during the last couple of months (see here).

As I have expressed at various occasions during the last years, I would like to see the ICMCC site as a repository of information on medical and care ICT, with a strong emphasis on patient related aspects (compunetics).
The ICMCC Portal on Record Access is an important example of a small knowledge centre, where an overview is given of the various aspects of (patient) record access.
The ICMCC news page, which gives an up-to-date overview of news and science articles as well as reports related to medical and care ICT has become an important source of information. It is used as the main news supplier of the HoIP page. It is painstakingly updated on a daily basis. However, we realise that much information is missing, especially at national and local levels. This is partly due to language, but also because it is very difficult to keep an even larger overview than we already have.

Here are my New year’s wishes:

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Medical and Care Compunetics: The Future of Patient-Related ICT

“This article deals with the role of compunetics in the future of patient related ICT (information and communication technology). The role of information, the development of knowledge centres, the collection and utilisation of data and the development of patient networks and e-learning are discussed.”
Abstract
Lodewijk Bos, JITH, 1 October 2007

Tagged: and ; posted on Monday, October 1st, 2007 at 4:43 pm
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Health Inequalities and Emerging Themes in Compunetics

M. Chris Gibbons, MD, MPH
Johns Hopkins Urban Health Institute, Johns Hopkins Medical Institutions, USA

Abstract

Inequalities in health have been documented for hundreds of years. The causes of these inequalities are complex and related to social, medical, environmental, class, healthcare system and behavioral determinants. Currently governments and healthcare systems are struggling to effectively reduce these differences. In addition, the number of individuals with chronic diseases is rapidly growing, particularly in developed nations. Most of the care needed for effective management of these chronic diseases is performed outside of the hospital setting by non-physicians. However the world’s healthcare systems are primarily oriented toward acute, hospital based emergency care and therefore currently largely unable to effectively and consistently provide high quality care to every person.

Recent developments in the computer industry have led to major advances in scientific research capabilities and in like manner will, in the future, likely enable significant advances in the field of compunetics. By enabling the instantaneous capture and utilization of large amounts of diverse data, IT will facilitate a population level orientation in compunetics in addition to the current focus on individual patient applications. Similarly the development of behavioral compunetics or a focus innovative uses of technology to influence health behaviors of patients and physicians are on the verge of occurring. In so doing, these and other advances in compunetincs may significantly increase our ability to provide high quality community oriented care, improve the health of individuals and populations and thereby help reduce health inequalities.

Tagged: , , and ; posted on Saturday, June 10th, 2006 at 5:24 pm
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Patient Centered (Health) Care Solutions

Workhop Organizers:
Dr Andy Marsh, VMW Solutions, UK
Denis Carroll, Westminster University, UK

Description

Maturing telemedicine technologies, struggling mobile networking revenues and increased personal healthcare awareness have provided the foundations for a new market niche that of “Healthcare Compunetics”. During the last 5 years, telemedicine (based on internet and web technologies) is becoming a reality both in terms of developing technologies and supportive legislation. Within Europe, wireless infrastructures have received a huge investment and although not well defined in how it will be achieved healthcare has been identified as a major stream of revenue with personal healthcare (e.g. EHCR on the handset) being a key issue especially for the handset manufactures.

Patients in the 21st Century are expecting a patient-centred service, safe, high quality treatment, comfortable accommodation services, fast access and an integrated joined-up system. The uptake of integrated Information and Communication technologies (ICT) will be crucial. Healthcare compunetics, the combination of computing and networking customized for healthcare, will provide the common policy and framework for combined multidisciplinary research, development and implementation.

Accepted papers

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Statistics

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Blog


A nice reminder why I did it in the first place, but where is the patient?
Posted 22 Oct 2008

My New Year’s wishes
Posted 8 Jan 2008


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