Tài liệu MEDICAL AND CARE COMPUNETICS 3 ppt

Medical and Care Compunetics 3 Edited by Lodewijk Bos President ICMCC Laura Roa Escuela Superior de Ingeniería, University of Seville, Spain Kanagasingam Yogesan Centre of Excellence in

MEDICAL AND CARE COMPUNETICS 3

Studies in Health Technology and

Informatics

This book series was started in 1990 to promote research conducted under the auspices of the EC programmes’ Advanced Informatics in Medicine (AIM) and Biomedical and Health Research (BHR) bioengineering branch A driving aspect of international health informatics is that telecommunication technology, rehabilitative technology, intelligent home technology and many other components are moving together and form one integrated world of information and communication media The complete series has been accepted in Medline Volumes from 2005 onwards are available online

Series Editors:

Dr J.P Christensen, Prof G de Moor, Prof A Famili, Prof A Hasman, Prof L Hunter,

Dr I Iakovidis, Dr Z Kolitsi, Mr O Le Dour, Dr A Lymberis, Prof P.F Niederer, Prof A Pedotti, Prof O Rienhoff, Prof F.H Roger France, Dr N Rossing,

Prof N Saranummi, Dr E.R Siegel, Dr P Wilson, Prof E.J.S Hovenga,

Prof M.A Musen and Prof J Mantas

Vol 118 R.G Bushko (Ed.), Future of Intelligent and Extelligent Health Environment

Vol 117 C.D Nugent, P.J McCullagh, E.T McAdams and A Lymberis (Eds.), Personalised

Health Management Systems – The Integration of Innovative Sensing, Textile, Information and Communication Technologies

Vol 116 R Engelbrecht, A Geissbuhler, C Lovis and G Mihalas (Eds.), Connecting Medical

Informatics and Bio-Informatics – Proceedings of MIE2005

Vol 115 N Saranummi, D Piggott, D.G Katehakis, M Tsiknakis and K Bernstein (Eds.),

Regional Health Economies and ICT Services

Vol 114 L Bos, S Laxminarayan and A Marsh (Eds.), Medical and Care Compunetics 2 Vol 113 J.S Suri, C Yuan, D.L Wilson and S Laxminarayan (Eds.), Plaque Imaging: Pixel to

Molecular Level

Vol 112 T Solomonides, R McClatchey, V Breton, Y Legré and S Nørager (Eds.), From

Grid to Healthgrid

Vol 111 J.D Westwood, R.S Haluck, H.M Hoffman, G.T Mogel, R Phillips, R.A Robb and

K.G Vosburgh (Eds.), Medicine Meets Virtual Reality 13

ISSN 0926-9630

Medical and Care Compunetics 3

Edited by Lodewijk Bos President ICMCC Laura Roa Escuela Superior de Ingeniería, University of Seville, Spain

Kanagasingam Yogesan Centre of Excellence in e-Medicine Lions Eye Institute, Australia

Brian O’Connell Department of Computer Science, Central Connecticut State University, USA

Andy Marsh VMW Solutions, UK

and Bernd Blobel eHealth Competence Center, University of Regensburg Medical Center,

Germany

Amsterdam • Berlin • Oxford • Tokyo • Washington, DC

© 2006 The authors

All rights reserved No part of this book may be reproduced, stored in a retrieval system,

or transmitted, in any form or by any means, without prior written permission from the publisher ISBN 1-58603-620-3

Library of Congress Control Number: 2006925767

e-mail: sales@gazellebooks.co.uk

LEGAL NOTICE

The publisher is not responsible for the use which might be made of the following information PRINTED IN THE NETHERLANDS

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L Bos et al (Eds.)

lat-ICMCC also recognizes the problems of professionals to find information on the latest developments in medical and care compunetics in a structured way

These two aspects form the basis for becoming the leading Knowledge Centre on medicine and care

To realize this goal our third annual event covers aspects concerning:

• Information supply to patient and professional

• Electronic health records, its standards, its social implications

• New developments in medical & care compunetics

Our third goal is to serve as the central meeting place for exchanging information

on all aspects related to medical and care compunetics and for all those concerned We are therefore pleased to be a platform once again for a number of European Commis-sion (IST) funded projects

And we are proud to be the platform for the EFMI (European Federation for cal Informatics) Working Groups “Electronic Health Records”, “Security, Safety and Ethics” and “Cards” and we would like to thank Dr Bernd Blobel and Dr Peter Pharow for their work to organise this session

Medi-On September 29, 2005 our co-founder Prof Swamy Laxminarayan passed away

We will be forever in his debt for his believe in our organisation and goals and his lentless support To honour the memory of one of the greatest minds in biomedicine and biotechnology of the twentieth century ICMCC will this year initiate an annual Swamy Laxminarayan lecture

re-On behalf of the ICMCC Foundation board we wish to thank the IFMBE and the WABT-ICET-UNESCO for accepting us as members and for their support for this con-ference We are equally grateful for the endorsement by the IEEE-SSIT

Finally we would like to thank all the authors who have contributed to making the third ICMCC Event into an interesting and challenging conference

Lodewijk Bos Laura Roa Brian O’Connell Kanagasingam Yogesan

Andy Marsh Bernd Blobel

Board Lists

Council Board

Drs Lodewijk Bos, president, The Netherlands

Robert von Hinke Kessler (vice-president, treasurer, secretary general),

The Netherlands

Denis Carroll, (vice-president), Westminster University, UK

Dr Andy Marsh (vice-president), VMWSolutions, UK

Prof Brian O’Connell (vice-president), Central Connecticut State University, USA Prof Kanagasingam Yogesan (vice-president), Centre of Excellence in e-Medicine, Australia

Prof Brian O’Connell, Central Connecticut State University, USA

Co-chair: Bryan Manning, UK

Chair Developments in Medical & Care Compunetics

Prof Kanagasingam Yogesan, Director, Centre of Excellence in e-Medicine, Australia

Scientific Advisory Board

Prof Dr Emile Aarts, Philips, Technical University Eindhoven, The Netherlands

Dr Hamideh Afsarmanesh, Universiteit van Amsterdam, The Netherlands

Prof Metin Akay, Dartmouth University, USA

Prof Andreas S Anayiotos, University of Alabama at Birmingham, USA

Prof Hamid R Arabnia, PhD, The University of Georgia, USA

Dr Rajeev Bali Coventry University, UK

Drs Iddo Bante, Centre for Telematics and Information Technology (CTIT)/

Technology Circle Twente (TKT), The Netherlands

PD Dr Bernd Blobel, Institute of Biometry and Medical Informatics, Universität Magdeburg, Germany

Dr Charles Boucher, University Medical Center Utrecht, The Netherlands

Prof Peter Brett, Aston University, Birmingham, UK

Dr Jimmy Chan Tak-shing, Alice Ho Miu Ling Nethersole Hospital, Hong Kong, China

Juan Carlos Chia, Proventis, UK

Dr Thierry Chaussalet, University of Westminster, London, UK

Dr Malcolm Clarke, Brunel University, UK

Dr Ir Adrie Dumay, TNO, The Netherlands

Ad Emmen, Genias Benelux, The Netherlands

Prof Ken Foster, University of Pennsylvania, USA

Dr Walter Greenleaf, Greenleaf Med Group, USA

Prof Dr Dr h.c Helmut Hutten, University of Technology Graz, Austria

Bob Ireland, Kowa Research Europe, UK

Prof Robert Istepanian, Kingston University, UK

Prof Dr Chris Johnson, SCI, University of Utah, USA

Prof Ida Jovanovic, Children’s Hospital of Belgrade, Serbia and Montenegro

Prof Zoran Jovanovic, University of Belgrade, Serbia and Montenegro

Donald W Kemper, Healthwise, USA

Makoto Kikuchi, National Defense Medical College, Japan

Prof Dr Luis G Kun, National Defense University, USA

Prof Dr Michael Lightner, University of Colorado Boulder, President IEEE, USA Prof DrSc Ratko Magjarevic, University of Zagreb, Croatia

Prof Dr Joachim Nagel, University of Stuttgart, President IFMBE, Germany

Prof Raouf Naguib, Coventry University, UK; University of Carleton, Canada

Ron Oberleitner, TalkAutism, e-MERGE Medical Marketing, USA

Prof Marimuthu Palaniswami, University of Melbourne Parkville, Australia

Prof Dr Neill Piland, Idaho State University, USA

Michael L Popovich MS SE, STC, Tucson, USA

Prof Dr Ir Hans Reiber, Leiden University Medical Center, The Netherlands

Dr George Roussos, SCSIS, Univ of London, UK

Sandip K Roy, PhD, Novartis Pharmaceuticals, USA

Prof Dr-Ing Giorgos Sakas, Fraunhofer IGD, Germany

Clyde Saldanha, JITH, UK

Prof Dr Niilo Saranummi, VTT Information Technologies, Past-President EAMBES, Finland

Prof Corey Schou, Idaho State University, USA

Anna Siromoney PhD, Womens Christian College, India

Prof Dr Peter Sloot, Universiteit van Amsterdam, The Netherlands

Prof Dr Jasjit Suri, Senior Director, R & D., Fischer Imaging Corporation, Denver, USA

Basel Solaiman, INSERM-ENST, France

Prof Mihai Tarata, University of Medicine and Pharmacy of Craiova, Romania

Dr Joseph Tritto, World Academy of Biomedical Technologies, UNESCO, France Prof Dr Bertie Zwetsloot-Schonk, Leiden University Medical Center, The Netherlands

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Preface vii Lodewijk Bos, Laura Roa, Brian O’Connell, Kanagasingam Yogesan,

Andy Marsh and Bernd Blobel

PARKSERVICE: Home Support and Walking Aid for People with

U Delprato, R Greenlaw and M Cristaldi

S Benton and B Manning

Empowering the Impaired Through the Appropriate Use of Information

Ishita Sanyal

Telemedicine Odyssey Customised Telemedicine Solution for Rural and

Jagjit Singh Bhatia and Sagri Sharma

A Deployable Framework for Mobile Telemedicine Applications 36

N.A Ikhu-Omoregbe, C.K Ayo and S.A Ehikioya

Applications of ePerSpace Service Management Platform in Health Care 42

Kambiz Madani and Mahi Lohi

Context-Aware Workflow Management of Mobile Health Applications 47

Alfons Salden and Remco Poortinga

Health Inequalities and Emerging Themes in Compunetics 62

M Chris Gibbons

Integrated Multimedia Medical Data Agent in E-Health 70

P di Giacomo, Fabrizio L Ricci and Leonardo Bocchi

Developing Health Surveillance Networks: An Adaptive Approach 74

Suzanne Tamang, Danny Kopec, Tony McCofie and Karen Levy

Using UMLS to Map from a Library to a Clinical Classification: Improving

Judas Robinson, Simon de Lusignan, Patty Kostkova and Bruce Madge

Methodological Issues for the Information Model of a Knowledge-Based

Telehealthcare System for Nephrology (Nefrotel) 96

Manuel Prado, Laura M Roa and Javier Reina-Tosina

xii

HEARTFAID: A Knowledge Based Platform of Services for Supporting

Medical-Clinical Management of Heart Failure Within Elderly Population 108

Domenico Conforti, Domenico Costanzo, Francesco Perticone,

Gianfranco Parati, Kalina Kawecka-Jaszcz, Andrew Marsh,

Christos Biniaris, Manolis Stratakis, Riccardo Fontanelli,

Davide Guerri, Ovidio Salvettis, Manolis Tsiknakis, Franco Chiarugi,

Dragan Gamberger and Mariaconsuelo Valentini

The State of the Art in the Reduction of Medical Errors 126

Danny Kopec, Suzanne Tamang, Karen Levy, Ronald Eckhardt

and Gene Shagas

e-Care Integration: To Meet the Demographic Challenge 138

Bryan R.M Manning and Mary McKeon Stosuy

Applied Medical & Care Compunetics to Public Health Disease Surveillance

and Management: Leveraging External Data Sources – A Key to Public Health

Preparedness 151 Michael L Popovich and Todd Watkins

Brian Fisher, Richard Fitton, Charline Poirier and David Stables

New Trends in the Virtualization of Hospitals – Tools for Global e-Health 168

Georgi Graschew, Theo A Roelofs, Stefan Rakowsky, Peter M Schlag,

Paul Heinzlreiter, Dieter Kranzlmüller and Jens Volkert

Monitoring the Integration of Hospital Information Systems: How It May

Ricardo Cruz-Correia, Pedro Vieira-Marques, Ana Ferreira,

Ernesto Oliveira-Palhares, Pedro Costa and Altamiro Costa-Pereira

MedIEQ – Quality Labelling of Medical Web Content Using Multilingual

Miquel Angel Mayer, Vangelis Karkaletsis, Kostas Stamatakis,

Angela Leis, Dagmar Villarroel, Christian Thomeczek, Martin Labský,

Fernando López-Ostenero and Timo Honkela

Improving Uptake of a Breast Screening Programme: A Knowledge

Management Approach for Opportunistic Intervention 191

Vikraman Baskaran, Rajeev K Bali, Hisbel Arochena, Raouf N.G Naguib,

Margot Wheaton and Matthew Wallis

Bernd Blobel and Peter Pharow

Developing a Strategic Framework for Healthcare Standards 207

Bryan R.M Manning

Lowering the Barrier to a Decentralized NHIN Using the Open Healthcare

Framework 214 Eishay Smith and James H Kaufman

Knowledge Management and Electronic Care Records: Incorporating Social,

James Bassinder, Rajeev K Bali and Raouf Naguib

Integrated Electronic Health Records Management System 228

P di Giacomo, Fabrizio L Ricci and Leonardo Bocchi

Standards for Medical Device Communication: X73 PoC-MDC 242

Miguel Galarraga, Luis Serrano, Ignacio Martínez and Paula de Toledo

A Standard Ontology for the Semantic Integration of Components in

I Román, L.M Roa, G Madinabeitia and L.J Reina

A Novel Management Database in Obstetrics and Gynaecology to Introduce

the Electronic Healthcare Record and Improve the Clinical Audit Process 266

Khaled El Hayes, Conor Harrity and Tahani Abu Zeineh

Thomas Norgall, Bernd Blobel and Peter Pharow

Bernd Blobel and Peter Pharow

Citizen Empowerment Using Healthcare and Welfare Cards 317

Paul Cheshire

BioHealth – The Need for Security and Identity Management Standards

Claudia Hildebrand, Peter Pharow, Rolf Engelbrecht, Bernd Blobel,

Mario Savastano and Asbjorn Hovsto

Formal Design of Electronic Public Health Records 337

Diego M Lopez and Bernd Blobel

Specific Interoperability Problems of Security Infrastructure Services 349

Peter Pharow and Bernd Blobel

Kari Harno and Pekka Ruotsalainen

PARKSERVICE: Home Support and Walking Aid for People with Parkinson’s

IES Srl, Via del Babuino 99, Italy

Abstract PARKSERVICE is a telemedical application currently being validated

in the EU The objectives are to provide a combination of home clinical and social

support for people with Parkinson’s disease with a revolutionary walking aid that

uses “visual cues” to enable improved mobility Early results are presented and the

outlook of home telemedicine and visual cueing for people with PD is discussed

Keywords Telemedicine, Parkinson’s disease, visual cueing

Introduction

PARKSERVICE is a new telemedical application combining home-based support for people with Parkinson’s disease (PD) and a PD-specific walking aid which uses a strategy known as visual cueing PD is estimated to affect 100-180 per 100,000 of the population (with most surveys favoring the higher estimate) and has an annual incidence of 4-20 per 100,000[1],[2] Taking a population of approximately 450M citizens this implies 450,000-900,000 people with PD (PWP) in the EU

PD is a progressive, incurable neurological disease resulting in depletion of the neurotransmitter dopamine in the brain Currently all therapy is symptomatic and primarily based on pharmacological enhancement of dopamine levels via the drug

levadopa.

The three cardinal signs of PD are bradykinesia (decrease in movement), resting

tremor (shaking, usually of the extremities of the limbs) and rigidity (muscular stiffness,

cramps) As the disease progresses PWP typically suffer from gait abnormalities,

falling and periods of complete immobility (akinesia or “freezing”) Additionally there

are complications associated with long-term use of levadopa, including daily

fluctuations between “on” periods of good symptom control (normal mobility) with

“off” periods of poor symptom control (poor mobility) and even dyskinetic periods of

exaggerated poorly controlled mobility Transitions between these phases are primarily

associated with the concentration of levadopa in the blood, but can be triggered precipitately by tiredness or stress Episodes of “freezing” can occur in either “on” or

“off” phases, although on-phase freezing is rare and difficult to treat[3] Freezing is associated with falling and heightened levels of anxiety Falls are common in PD: two thirds of people with PD fall each year with most eventually becoming fallers [4]

It is well known that some subjects who experience freezing can suddenly and dramatically “break out” of their frozen posture in the presence of particular cues, the nature of which vary with the individual For example, some PWP who are unable to walk normally can dance to music, walk over obstacles, stripes or up stairs or when emotionally stimulated (PD literature includes episodes of paralyzed PWP running out

of burning buildings) [5] Enhanced mobility under these conditions is known as

paradoxical kinesis (This is described in more detail below.)

Good management of PD requires clinical specialists both for accurate diagnosis and regular follow up Periodic adjustments of drug regime are normal Management is complicated because of the difficulty PWP experience getting to clinics, and in

fluctuating PD, because the PWP may present few disabling symptoms during an

appointment Additionally there is a European shortage of neurologists [6]

PD is an expensive disease In the UK the total annual direct cost of care including NHS (National Health Service), social services and private expenditure per patient have been estimated at ~€9,000 (£5,993, 2003) per patient per year [7] With a total UK population of 60M this implies a total direct cost of PD in the UK of ~€1,000M (2003) The same study estimated total annual direct costs of €6,300 for patients living at home, €23,260 for patients whose time was divided between home and an institution and €29,300 for patients in full-time institutional care

Thus, every year someone with PD can stay at home, rather than take up part-time institutional care, saves (UK, 2003) €14,000/year

The relevant aspects of PD can therefore be summarized as follows: PWP suffer varying and complex symptoms associated both with the disease itself and with the long-term use of levadopa, the primary pharmacological therapy The effects of PD are particularly profound on mobility (with associated loss of confidence and social exclusion) Some PWP display a startling recovery of mobility in the presence of

“cues” such as stripes on the floor The management of PD is complex and expensive, both in per-patient terms and in total (since PD is a widespread disease) PWP may experience difficulties finding suitable neurologists, traveling to clinics, and describing symptoms whilst there

In many ways, therefore, PWP present an excellent group for telemedicine: the disease is widespread, affects mobility, there is a shortage of neurologists and treatment

is expensive The presence of paradoxical kinesis also presents intriguing possibilities

for enhancing mobility (which are described below)

1 Parkservice

PARKSERVICE is an application of telemedicine targeted specifically at PWP The service consists of three parts: PARKLINE, a TV-based communication system for the PWP at home, PARKCLINIC, a complementary system for clinicians and INDIGO, a mobility aid for PWP mediated through PARKLINE

U Delprato et al / PARKSERVICE: Home Support and Walking Aid

2

Firstly, through PARKLINE, a PWP is connected through the Internet to their

clinician and to other PWP The primarily medium of interaction is exchange of line video which can take place via broadband or dial-up connection PWP can make short videos of themselves using a web-cam controlled by television remote control (via a multimedia PC) The objective is to provide a simple user experience with push-button interface After taking a video the user can review it, reject it or distribute it to a list of other PARKSERVICE users including their own clinicians

off-PARKLINE also supports other ways of data exchange: particularly a symptom diary (which is useful for understanding a patient with fluctuating PD) and text messaging (which obviously requires a keyboard)

Secondly, since PARKLINE requires special hardware to enable user access

PARKCLINIC has been provided for secure clinical access through web browsers With PARKCLINIC a clinician can view videos uploaded by PWP at home, send text messages to them or upload videos of their own

Thirdly, INDIGO is a new mobility aid which uses video delivered through a pair of

glasses to trigger paradoxical kinesis in suitable PWP

Therefore, using PARKSERVICE a PWP at home can video their evolving symptoms of PD and their response to different drug regimes They can experiment with visual cueing, exchanging video records with their clinicians and other PWP For

those PWP who exhibit paradoxical kinesis a secondary component of

PARKSERVICE, INDIGO, can be used to enhance mobility throughout and beyond the home

2 Telemedicine and PD

As long ago as 1993 a pilot study of telemedicine for patients with Parkinson's disease demonstrated the possibility of dependable and valid remote-assessment of these patients Patients also viewed this technology as enabling access to better health care [8] This result was confirmed in 2002 in a study which included the adjustment of

PD medication via videophone [9] However, few research initiatives have made an impact on the market This is unfortunate because PWP represent a particularly appropriate population for telemedicine for the following reasons:

x The disease is widespread

x Clinical treatment is expensive

x There is a shortage of neurologists

x Travel is difficult

x Assessment by video has been validated

x Some PWP react strongly to appropriate video stimulation (paradoxical

kinesis).

Therefore the opportunity exists to make a cost-effective case for telemedicine beneficial to people with PD

3 INDIGO and Paradoxical Kinesis

An important component of PARKSERVICE is a mobility aid called INDIGO INDIGO consists of a pair of glasses with integrated visual display and wearable

electronics which feed visual cues to the wearer, triggering paradoxical kinesis in

suitable PWP

Many people with PD have difficulty initiating and sustaining walking in conditionswhich would normally present no problems (such as an unobstructed corridor) Thedegree of these mobility difficulties can vary with the subject, the time of day and thestage of disease but are always accompanied by severe loss in quality of life Typicallywhen people with PD can only move very slowly or completely freeze (phases called

“bradykinesia” and “akinesia” respectively) they feel vulnerable and isolated.

Accompanying symptoms include an expressionless “masked” face, a weak voice and bent posture Social interaction becomes extremely difficult and each year many deathsand injuries occur as people with PD attempt to move whilst in this state

Paradoxically, when visual “obstructions” are placed in their way, a small proportion

of people with PD undergo a dramatic release from these symptoms and can suddenly

stand up straight, speak strongly and walk normally: an effect called paradoxical

kinesis These “obstructions” can be as simple as pieces of paper set down on the floor

and are usually referred to as visual “cues”

The physiological mechanisms of paradoxical kinesis are not understood and until

recently there was little opportunity to analyse it or exploit it However, technology has now evolved to the point where a user, wearing adapted glasses, can see visual cues,such as virtual “pieces of paper” wherever they looked whilst continuing to negotiatethe real world, interacting normally with other people This allows certain people with

PD to walk, to talk and to socialise where before they were effectively paralysed

Figure 1 INDIGO in use with darkened glasses

U Delprato et al / PARKSERVICE: Home Support and Walking Aid

4

Visual cues do not trigger paradoxical kinesis in all PWP but the number of suitable

PWP and the nature of the visual cueing that is most effective is not known It is believed that PWP in the intermediate stages (II-IV on the Hoehn-Yahr scale of I-V) respond In earlier work we estimated 15% of this population would benefit from visual cueing but this was not statistically significant [10]

It is therefore expected that PWP will need to experiment with different visual cueing, by downloading selections of video on to their home television If they find they respond positively the PARKSERVICE consortium will provide an appropriately configured INDIGO

To date, the most popular choice for visual cues has been simply black and white

stripes scrolling upwards [ibid]

4 Market Validation

Validation trials of PARKSERVICE will take place in summer 2006 involving several associations of PWP and clinical investigators Additionally independent clinical trials of INDIGO will take place led by the Institute of Neurology, Lodon The major areas of investigation are listed below:

Drug management by video: the clinical assessment of PWP by video This has been

investigated before – if these results can be confirmed this would be of enormous importance to the market validation of telemedicine for PWP

Social inclusion of PWP: do PWP report a greater feeling of connectedness to their

clinicians and other PWP given the ability to make and exchange messages from home, principally by video

Walking aids based on visual cueing: INDIGO, and devices using cueing, have

become increasing available in the last few years However, none has become a mature product This may be due to a lack of clinical validation of this new device which should be addressed by clinical trials

In addition to these issues, to be addressed this summer, a market analysis has been performed Recalling that PARKSERVICE is aimed at users who have Parkinson’s disease with targeted symptoms living at home who have or could get Internet access and taking prevalence figures of 100-200 per 100,000 of the general population, adjusting for disease stage, Internet availability, and possible co-morbid conditions such as dementia, we estimate 180,000 to 360,000 potential PARKSERVICE users in EU-25 Interestingly, 60% of the PD telemedicine market lives in UK, France, Germany and Italy

We also examined the trends in the PD market for telemedicine The patient population will steadily grow, due to the combined effect of the growth in the general population in Europe and of the longer life expectancy of ageing people and PWP in particular, but these demographic effects will be dwarfed over the next few years by the effect of Internet penetration into European households Considering an unchanged prevalence of PD, we estimate an increase of the population of PWP by 6,000 between

2006 and 2008

Acknowledgments

The PARKSERVICE market validation project receives support from the European Commission’s e-Ten initiative in Information, Society and Media

References

[1] Dodel RC, Eggert KM, Singer MS, Eichhorn TE, Pogarell O, Oertel WH “The costs of drug treatment

in Parkinson's disease” Movement Disorders 1998, 13,249-54

2003 18:19-31

[3] Kompoliti K, Goetz C, Leurgans S et al., “On freezing in Parkinson’s disease: resistance to visual cue

walking devices”, Movement Disorders, Vol 15, Issue 2, pp 309-312, 1999

[4] Ashburn A, Stack E, Pickering RM, Ward CD “A community-dwelling sample of people with Parkinson's disease: characteristics of fallers and non-fallers.” Age & Ageing 2001;30:47-52

[5] James Purdon Martin The Basal Ganglia and Posture J.B Lippincott Company, 1967

[6] The WHO Atlas, 2001

[7] Findley L, Aujla M, et al “Direct economic impact of Parkinson's disease: A research survey in the United Kingdom” Movement Disorders18:1139-45, 2003

[8] Hubble JP, Pahwa R, Michalek DK, Thomas C, Koller WC “Interactive video conferencing: a means

of providing interim care to Parkinson's disease patients.” Mov Disord 1993;8:380–382

[9] Wilson, P., Magee, V.L., Fincher, L., and Ward, C.J “Videophone medication intervention for Parkinson's disease patients”, Telemedicine Journal and e-Health 10(Suppl 1): S63

[10] The Validation Report of the PARREHA project, IST-1999-12552, 2003

U Delprato et al / PARKSERVICE: Home Support and Walking Aid

6

Assistive Technology – Behaviourally

Assisted

Business Psychology Centre, Department of Psychology, University of Westminster Centre for Business Information, Organisation, and Process Management, Westminster

Business School, University of Westminster

Abstract In considering the recurrent problems involved in technology led

initiatives within the public sector, this paper seeks to identify change

management requirements needed to help avoid these latent pitfalls in the

widespread introduction of Assistive Technology

It develops a change process approach based on current clinical psychology

techniques used in assessing sources and level of resistance to behavioural change

and applies them to managing effective benefits realisation

Keywords Change management, Assistive Technology, Radar plots, Behavioural

Adaptation and Business Psychology

Introduction: Organisational Capacity to Create New Behaviour

Sadly the ageing process tends to be accompanied by an ever widening set of ailments and impairments that, without appropriate care support, increasingly limits the quality

of life and the maintenance of an independent lifestyle Its effects are not solely confined to physical health, but extend across the spectrum of psychosocial and socio-economic areas as well Moreover as these multivariate problems are frequently interlinked, dealing with them individually within organisationally assigned boundaries almost guarantees poor results and wasted effort Logically what is needed is a “joined-up” multi-disciplinary, multi-agency approach, which provides effective co-ordinationsupport to frontline staff

The issue this raises is the cross-professional need to understand the benefits that change can bring and that will accrue not only to their patients, but also to the quality

of care they deliver The core of this lies in gaining a better understanding of the interaction and interdependencies between their separate professional processes and its impact on their roles and relationships, shown below in Figure 1

S Benton and B Manning

L Bos et al (Eds.)

IOS Press, 2006

© 2006 The authors All rights reserved.

Figure 1 Integrated Care Process Interaction

To augment this process a full deconstruction of the core roles would inform aparallel production of tactical and strategic behavioural programmes able to consolidatebest practice, under changing terms, whilst stretching towards changing and newperformance targets in a sustainable manner This could be viewed in terms of aniterative examination and weighting of roles, skills and competence, the primary basis

of which is a coherency of competence that connects personal and individualcompetence to team competence (to maximise tactical delivery) and to organisational

processes and professional culture to maximise strategic competence The Bpsy©

model offers a framework for the development of behavioural change programmesbased upon an integration of; personal, team and organisational competence, an outlinewill follow

1 The Situation: A Challenge for Joined-up Coherency

The potential complexity of a single case, even at a high level, is demonstrated in the

“radar plot” shown below in Figure 1, in which each of the sixteen main “dimensions”

of need is scaled outward from zero at the centre to a maximum of ten on the periphery.The results of a typical initial assessment are combined as an area plot to provide a graphic demonstration of the problem space The risk of fragmented diagnostic and support actions is ever present given the range of information points taken to profile themedical and personal needs of this patient

This approach helps to emphasise the degree to which current levels of care and human resource are unlikely to increase in step with the predicted escalation in care need

S Benton and B Manning / Assistive Technology – Behaviourally Assisted

8

Figure 2 Radar Plot of Core Process Needs

This representation helps to highlight three significant problem areas that liebeyond the red level- 6 “danger” band Whilst the overall health of the patient has notyet entered the “at risk“ zone there are concerns over the level of nutrition, which could

be associated with financial problems However mental health issues that have alsocontributed probably drive this to worrying levels of social disassociation and possibleneglect

Besides providing a readily understandable picture of the overall situationpresented it also indicates the likely inter-disciplinary, inter-agency complexitiesinvolved and the level of case co-ordination needed to improve the position In order toachieve the coherency aimed for, a similar behavioural radar plot would be developedagainst which the four fundamental quadrants shown above could be mapped in terms

of underlying behavioural sets Resolving these issues in practice will hinge onappropriate knowledge of each of the relevant care pathway options, the linkinginterdependencies between them, and the necessary resources required to deliveryquality care However up to now little or no progress has been made towards achievingthis necessary degree of integration The most likely catalyst to set this underway is therising spectre of a massive surge in the number of over 65s that is set to double toaround 40% of the population of many nations over the next few decades This is set to

be compounded by substantial reductions in the number of available carers as theeffects of the lowering in national birthrates begin to hit home

Figure 3 Implications of Change

2 Change: Coherence between Technology and Behaviour

The immediate effect of a diminishing pool of care professionals on service delivery isbound to focus on finding ways of “working smarter” to meet increasing demandwhilst maintaining quality of care This will inevitable involve seeking ways tooptimise multi-disciplinary, multi-agency working through radical processimprovement, re-design, and resource substitution Essentially, within the capacity for integration will be the need for role clarity assigned within each of these processes and the re design of skill and behavioural competence to promote integrated use of existingand evolving technology and existing and evolving competence In this instance competence is taken to represent those work specific skills necessary to the effectivedelivery of work targets This will necessarily require re modeling of organizationalpractices, professional skill sets and resource planning Under such conditions newtechnology may serve to amplify personal and professional disabling behaviour as theadaptation to changing work roles and processes re shape organizational performanceand deliverables’ criteria (Bridges, 2003)

An illustration of the response to such demands is shown in the s plot in Figure 4.This illustrates the nature of behavioural adjustment to change (in the strictest terms itshows the recovery to loss, (Kubler-Ross, 1991)) in this instance we are concerned toeffect organisational change, but all change is personal The original coping stage,shown on the peak of the right hand quadrant, would represent the current situation, theexisting relationship with technology, skill sets and strategic objectives The oppositepeak is the perceived new opportunity for a change in strategic objective and direction

as identified by the organisational executive One observation is that the line of sight is significantly different to those whose responsibilities and roles require the adjustment

to change objectives via a purchase on the behavioural here and now The curveillustrates the disablers associated with personal and organisational change The lower

S Benton and B Manning / Assistive Technology – Behaviourally Assisted

10

left quadrant highlights some of the behavioural resistance accompanying this changeand the lower right quadrant highlights facilitative behaviours, to be acquired.

Change:

The Transition Curve

Self Con fiden

Anger & Anxiety Hidden

Past

R e si

st a ce

&

S o ta g

OVER TIME

Frustration & Confusion

Low

Disruption of thinking, feeling and behaving!

Testing Acceptance

Resistance Bargaining

Coping

Adapted from Gary Austin, circleindigo (2004)

Figure 4 The Transitional Curve: Pathway to Behavioural Adaptation

The relationship between the personal and organisational disablers will be written

in the assumptions and expectations embedded within the personal and interpersonalculture, described by Hofstede (1997) as the ‘behavioural software’, that eitherenhances or reduces individuals’; teams and organizations’ capacity to adapt and utilizenew technology and work practices Frequently, the schism between these twoelements is exacerbated by technological change The future state may show up clearly

on the executive radar screen, as opportunities that cannot be missed, however unlessthe technological and behavioural change programmes are fully integrated and capable

of mutual re design the time spent on the downwards slope in Figure 4 will lead toconvoluted patterns of denial and resistance with commensurate waste of time and temporary (probably short term funded) resourcing

3 Sustainability: The Need for Assistive Behaviour

In order to achieve a change in behaviour rather than a shift reaction to changingprocedural and technological imperatives (which invariably fail to meet new criteria over time) behavioural change programmes should aim to maximize the coherence

between each level of skill set required, in a manner that weights the programmescapacity to increase the overall capacity to minimize the impact of behavioural

disablers An example of one such programme (the Bpsy© model) is illustrated below,

in Figure 5

Conflict Resolution

Business Psychology

Team ship Perception

Decision Making

• Utilisation of different views

Competence

• Behavioural preferences

• Synergy

• Resolution of differences

• Utilisation of different views

• Recognition of different skills and behaviours

Behavioural Change

Bpsy © (Benton, 2001)

Figure 5 Business Psychology Model for Coherent Behavioural Change

4 Business Psychology Model

The model asserts that culture and behavioural change programmes need to bolsterexisting levels of high quality communication between all levels of the organization.The start point to this process is the personal skills and experience profile of theindividual A series of core skills are acquired through the programme, each of which is directed to reduce the impact of known personal and interpersonal change disablers(e.g the down slope in Figure 4) in the core areas of competence shown above in thefive bubbles Acquisition of one set actively enhances acquisition of the next, laying the foundation for integration and coherence (Benton, 2005) The model applies at theintra individual, inter individual, intra- team, inter-team and organizational levels, eachelement playing a part in supporting competence at all levels of an organization’sresponse to behavioural points of resistance (e.g support the move up the right handquadrant’s slope) The opportunity to radically re design the delivery of health care protocols will grow under the pressure of immense social and technological drivers, thetrajectories of which are already underway

Whilst such a major change can only succeed with the full support andengagement of all the care professions involved, it will also need to substantially refineand redefine its working structures and the roles within them However it is unlikely

S Benton and B Manning / Assistive Technology – Behaviourally Assisted

12

that this alone will resolve the potentially severe imbalances between demand and reduced levels of available skilled human resources.

Any other major reduction in workload input per case is most likely be derivedfrom the use of Assistive Technology, used wherever possible and ethically appropriate

to enable further optimization of the care processes by resource substitution

Until now Assistive Technology has rather remained shunted into the quiet cornerreserved for the disabled and the elderly impaired which has generally been kept wellaway from the mainline of health service provision Its has steadily evolved from theprovision of basic stand-alone physical Aids and home Adaptations to cope with livingwith impairments, to increasingly sophisticated applications of computing, control andcommunication systems to radically enhance opportunities for independent living.Over the last decade a considerable body of knowledge and expertise has beenbuilt up in this arena particularly with considerable EC support through their COST

219 programme This has led directly to the development of “Smart Homes” and

“Smart Community Care concepts that have proven extremely successful in Finlandand the Benelux countries, where fairly substantial urban settings have beenestablished

The ever increasing sophistication and complexity of the resulting systemsintegration is leading into the arena of pervasive or ubiquitous computing wheresensors/devices are embedded, sometimes literally within the “woodwork” of the widerenvironment As such they meld into their surroundings collecting data without theuser's active intervention, either as part of a fully or partially autonomous local controlloop, or as input to a remote Care Watch facility

As yet the next step to extend the Care Watch approach to a pro-active Agency, Multi-Disciplinary Care Service Co-ordination Service remains to be taken aspart of an overall Assistive Technology capability to serve the needs of hard-pressedcare professionals and those who depend on them

Multi-Figure 6 Visualising Progress in the Behavioural Change Process

Whilst this is essentially a proven technology, its further development to integrate elements of e-government and e-health into a single support service has a number of legal and political hurdles to overcome In many ways this partly explains why so far It has been predominately driven from a ‘technology-push’ perspective for sale to patients, particularly as this technology is not seen by most authorities as part a Health Service’s role to use or provide

Probably the biggest stumbling blocks are the issues of privacy linked with that of data protection, which have been allowed to overshadow the whole process The odd thing is that this is being used to prevent delivery of necessary care in the name of the patient! This is even more surreal, when the answer already exists in medical care, which cannot proceed without a waiver in terms of the Consent Form This grants rights of physical intervention for specific clinically beneficial purposes, similar rights for controlled intervention of privacy for the same ends are a potential solution

5 Conclusion

The drivers for successful change invariably come down to recognizing and wanting to obtain desirable benefits These almost inevitably start at the personal level, rising through professional performance in teams upwards to the higher organizational levels The aim is to harness this motivation to gain commitment to accept and use Assistive Technology not only to respond to increasing demand pressures but also to adopt and use the technology innovatively to re-mould the way care is delivered in future

To avoid costly and technologically top-heavy development programmes stalling, due to a mismatch between behavioural target profiles and performance target outcomes, behavioural counter measures could be developed These measures would be designed to address the down slope issues outlined above (Figure 4) and the need for building a behavioural capacity that countered the down slope ingredients Moreover, the capacity could be shaped to accommodate key technological drivers as they impact professional roles, skill sets and performance indicators Assistive technologies can enhance the quality and efficiency of care if they are embedded within a sustainable culture of change To achieve sustainability, coherence between personal and organizational competences (a competence is a strategic aim presenting as a tactical behaviour) is required; in short the organization will need assistive behaviour technology

References

[1] Benton, S (2005) ‘Every Individual is an Exception to the Rule’ The Association of Project Management Year Book

[2] Bridges.W (2003) Managing Transitions: Making the Most of Change

[3] Hofstede, G (1997) Culture and Organisations: Software of the Mind McGraw-Hill

[4] Kubler-Ross.E (1993) On Death and Dying Simon & Schuster

[5] Manning B (1997) Coordinating Care Provision: Toward Sharing Case-Critical Information New Technology in Human Services 13(1&2), (1999)

S Benton and B Manning / Assistive Technology – Behaviourally Assisted

14

Empowering the impaired through the appropriate use of Information Technology

and Internet

Ishita Sanyal1

Founder Secretary, Turning Point, a rehabilitation center

Director Disha, a child guidance center Member of WFSAD (World Fellowship for Schizophrenia and allied disorder) Indian Representative of ISPS (The International Society for Psychological Treatment of

Schizophrenias and other Psychoses) Director of NAMI, India, Eastern Region

Abstract Developments in the fields of science and technology have revolutionized

Human Life at material level But in actuality, this progress is only superficial:

underneath modern men and women are living in conditions of great mental and

emotional stress, even in developed and affluent countries People from all over the

world irrespective of culture and economic background suffer from mental illness and

though a number of researches are carried out worldwide but till date it has not been

possible to resolve the problem

In today’s world stress is increasing everyday The individualistic approach towards

life; the neonatal family system has increased the burden even further Without

adequate support system of friends and relatives – people are falling prey to mental

illness The insecurities, the inferiority feelings of these persons lead to disruption of

communication between the sufferer and the family members and friends The sufferers

prefer to confine themselves within the four walls of their home and remain withdrawn

from the whole world They prefer to stay in touch with their world of fantasy – far

away from the world of reality Disability caused by some of the mental illnesses often

remains invisible to the society leading to lack of support system and facilities for them

These unfortunate disabled persons not only need medication and counseling but a

thorough rehabilitation programme to bring them back to the main stream of life The

task being not an easy one According to the research works these persons need some

work and income to improve their quality of life

In this scenario where society is adverse towards them, where stigma towards mental

illness prevails; where help from friends and community is not available- training them

in computer and forming groups through computer was thought to be an ideal option for

the solution- a solution to the problems of modern life through modern technology

machine more easily than with society and people

their further developments

x Computers provide them facilities to interact with others and form self-help

groups

Thus this modern gadget, which is sometimes believed to make a man loner, has been

actually acting as the bridge between the persons suffering from mental illness to the

society in general The disabled person also gains confidence and courage as they gain

control over the machine Gaining control over the machine helps them to gain control

over their life The product of Science and technology has been seen to revolutionized

Human Life not only in material level but also on personal level- helping the disabled to

gain control over their lives

Introduction

The most neglected invisible problem of the society in a developing country like India is the burden of mental problem, its effects and its outcome in the coming years The World Health Organisation has warned that many countries will be unable to cope with a predicted boom in Mental Illness over the next decade According to Dr Gro Brundtland, the head of WHO, “If we don’t deal with Mental Illness, there is a burden not only on Mentally Ill, on their families, their communities, there is an economic burden if we don’t take care of people who need our care and treatment.”

In India over 125 million people suffer from Mental Illness But even then the government had no other option but to allocate funds on physical illness or disabilities like cancer, AIDS or any other problem than on Mental Illness Lack of economic resources along with lack of professionals in the field has made the scenario even bleaker and worse

In a developing country like India the best possible option is empowering the impaired through right information (psycho education) and formation of self-help groups to meet the current need

Nearly 125 million people in India are in need of mental health services There are at present 3-4 million patients suffering from Schizophrenia in India To this are added about 30,000 new cases every year There are only about 25,000 psychiatric beds and about 3,500 qualified psychiatrists in the country

Some experts have calculated that mental health problems contribute to an even greater reduction in the quality of life in India than tuberculosis or cancer This is a leading area of the health and disability worldwide while one in four people are affected by mental or neurological disorders at some point of time in their life

In India with limited financial resources, the Government pays more attention to physical problems related to personal health issues Government and other well-known organisations are more focused on keeping funds for physical disability, cancer, AIDS or any other physiological ailments or problems

The mental problem is an invisible problem and so people cannot feel it or visualize the impact of the problem Neither can they understand the impact it can create on the individual who is affected and his family members The society is apprehending them as a burden and not putting efforts to utilize their potentialities or putting adequate efforts to change them again in to a productive member of the society

I Sanyal / Empowering the Impaired

16

The problem with illness like Schizophrenia is even more They remain as burden to the society They live their whole lives within the four walls of their dark room, remain secluded and accept a sedentary lifestyle where they spend the day and night without doing any effective work They live their life on the mercy of other family members It is really difficult for the family members too, to make arrangement for a non-productive family member’s food, clothing, shelter and ever increasing cost of pharmaco-therapy So these unfortunate victims are sent to homes or government hospitals, which are even worse than jails No one thinks about their Human rights, their feelings, and their emotions –although their whole problem centers on feelings and emotions They too start believing that they are not members of this world anymore – they are here by mistake or by chance not by choice Some of them prefer to commit suicide – some dare not as they are too weak physically and mentally to take a bold step like that For improvement of the QOL of these persons rehabilitation centers are needed to provide them vocational trainings; to make them capable to start earning, to bring back motivation, to remove their apathy and lack of drive

It is seen that in urban population the most important need for a person suffering from mental illness like schizophrenia is work and economic independence So a vocational training that will make them productive, a method to reach out more people within limited resources is needed

1 Challenges

One of the biggest stumbling blocks to provide adequate services for the patients is the stigma against schizophrenia Among the general public, there continues to be an attitude of fear, disgust and a desire to avoid patient suffering from the disease Even persons from medical profession continue to have the prejudices and think it to be a ‘hopeless incurable medical disease’ In case of other disabilities-they can be perceived by the people and thus receives adequate empathy – but people generally cannot recognize the problems and challenges of persons with mental illness and so their problems remain unnoticed Facilities, grants from government are also limited due to the same reason

In this background proper utilization of computers as an aid to awareness and psycho education; as a medium to earn money; as a process to communicate with others and form Self Help group is needed With this framework in mind Computer training was started 8 years back for the controlled group

2 Aims and Objectives

x Reducing the burden of illness by making the sufferers and their family members aware of the problem

x Delivering appropriate psycho education for both the groups and learning coping and crisis management strategies

x Filling the gap that exists between the intensity and magnitude of the problem and the expertise available

x Reducing the stigma

x Affordable treatment opportunities

x Low cost centers

x Social rehabilitation

x Vocational training

x Group therapy

Methodology A control group of 85 persons were given training in computer, made them

aware of the problem through psycho education through information from various reliable data sources and Internet A group of people received only medicine without any scope of (psycho education) getting information, awareness and rehabilitation

3 Observations in controlled group

Awareness – Lack of awareness of the family members and the person concerned often

increases the problem Family members and the person concerned without adequate knowledge used to believe that “once an illness is always an illness” and “there is no way out” A feeling of hopelessness and helplessness was prevalent amongst the family members This is used to increase their stress and anxieties, which in turn used to increase their Expressed Emotions (EE)

As generally the family members in India are supportive – gaining adequate knowledge and information about the illness through specific reliable websites in Internet instills a ray of hope in them This also reduces the level of anxiety and stress This helps them to provide adequate support and motivation to the affected members

Moreover, the information about other families throughout India helped to form help groups where they feel free to discuss about the problem without shame and discomfort

self-Effect on the sufferer – the sufferer too developed new hopes; regain the courage to fight back The stories of recoveries from all over the world give them the needed inspiration and on hand example which often psychiatrist and psychologists fail to provide Awareness along with vocational trainings and rehabilitation helps them to gain back needed confidence and start their life anew

4 The effect of psycho-education

Psycho-education is very important for both the family and the person concerned to get a true understanding of the problem, learning coping strategies, crisis management, handling delusions and hallucinations India is a vast country and due to lack of adequate funds it is often nearly impossible to carry on psycho-education program to the magnitude that is needed for the mass Computer and information through different web pages often provide the adequate solution to the problem People started to learn together, take print outs and get the knowledge required to cope with the situation Out of 85 controlled group members

I Sanyal / Empowering the Impaired

18

80 families along with sufferers depend on the information that they receive through Internets and gain confidence and realistic hopes for future

5 Filling the gap

Compared to the magnitude of problem in India the number of professionals available is limited To fill in the gap, none other than the computer proves to be an effective solution Through Internet the advice of psychiatrist and psychologist can be taken Though till now

we have not been able to have web-camera but we have been able to keep a link between the controlled group and some renowned psychiatrist and International groups and take their needed help and advice

Reducing the stigma – ‘Person suffering from mental illness are either dangerous or do

not possess the intelligence and rationality to talk to them”- is the idea of general public They want to segregate them, reject them, and remove them from their so-called ‘normal society’ Through Information technology the gap can be reduced The communities where awareness programmes are made have started to accept them more freely now

Affordable treatment opportunities – For running a rehabilitation center for persons

suffering from schizophrenia empathetic people from the community are given appropriate trainings through computers Online psychiatrist and psychologist offering services reduces the cost of treatment sharply

Social rehabilitation – This is the most important need for the people suffering from the

disorder Whenever, any human being suffers from any disease or crisis it’s human to want the support, the comfort of family members, friends and community This culture still now prevails in India – though there is a breakdown of extended family, due to the impact of Western influence on the Indian society – but till now there is a huge difference between the lifestyle of Indians and that of the western world Till now people care for their family members; parents support their children till their death and siblings take care have there affected family member Till now the Rehabilitation centers run by the self-support groups

of India are more effective than those run by professionals In this background where the bondage of love and understanding is important, social rehabilitation of the sufferers is important

Due to stigma, due to hopelessness, due to fear of rejection – the sufferers often try to avoid interacting with the society This creates a barrier Computer often acts as an effective tool to remove this barrier A person feels free and safe to experiment with computer It creates a criticism free atmosphere where they are learning to control a machine These persons used to think that that they have lost control of their life and so dare not to control others Controlling a machine helps them to regain their self-confidence Computer being a modern gadget they feel proud to learn it They get the pleasure and confidence that they too can learn something new, something valuable in life

Interaction with other sufferers though Internet gives them a chance to interact with others without being afraid of developing a negative self-image Being overly sensitive, these persons are often afraid to meet anyone They often fear that they may create a

negative image in the eyes of others They often want to hide their face or entity in the fear

of creating negative image, which is very painful to them

Computer helps them to interact, communicate themselves freely keeping them in disguise Once they gain back the lost confidence, they feel free to communicate directly with the society This helps them in social rehabilitation process

Effects of vocational training – Work therapy works wonders in case of people with

schizophrenia especially if they earn through it The economic freedom adds value to their life and the QOL increases Once they gain back confidence- these persons act as a resource person in vocational training program After their recovery, they too act as a teacher and give trainings to other victims of mental illness and help in the process of rehabilitation

Group therapy – Group therapy always promotes the feeling ‘that my problem is not

unique one’ and that “I too can recover like others” Information of recovery from sufferers throughout the world – often acts as group therapy session where they can chat and discuss their difficulties and search for a probable solution

6 Few Facts

The world scene of schizophrenia and other mental illness

The two international multi-centric studies organized by the World Health Organisation (W.H.O) namely the international pilot study of schizophrenia (IPSS) initiated

in 1965 and determinants of outcome of severe mental disorder (DOSMED) initiated in

1977 have fairly well established that schizophrenia occurs in all parts of the world, both in the developing and industrialized countries [1]

It has also been seen that the prognosis of the disease is better in developing countries [2] like India [3]

Different explanations were given out of which tolerance of odd behaviours by families; support from the joint families and community play a major role

Researchers think that maybe the social support along with lack of awareness and medical model, which tends to prove it as a hopeless disease, is actually the cause for good prognosis

Even then the difficulty in India lies in lack of professionals compared to the magnitude of the problem, lack of funds needed for rehabilitation centers

7 Conclusion

Machines like computers along with necessary information through IT can work wonders

in case of disability arising from dreaded disorders like schizophrenia It has been found through three years of study that computer have a very important role in the life of person with mental illness Empowering these impaired through the latest gadget often proved to

be economically viable project to solve the problem Disability arising out of mental illness can be handled effectively through computer and Internet

I Sanyal / Empowering the Impaired

20

It has been seen that this modern gadget, which is sometimes believed to make a man loner, has been actually acting as the bridge between the persons suffering from mental illness to the society in general The disabled person also gains confidence and courage as they gain control over the machine Gaining control over the machine helps them to gain control over their life The product of Science and technology has been seen to revolutionized Human Life not only in material level but also on personal level- helping the disabled to gain control over their lives

Empowering the impaired through computer and IT has proved to be a needed solution

to the most dreaded problem of modern world – disability arising out of mental illness

Other used references:

Kapur

SchizophreniaII Archieves of general Psychiatry by Hogarty, Ge, Anderson, CM Reiss

Indian Council of medical research

Telemedicine Odyssey Customised Telemedicine Solution for Rural and Remote

Areas in India

Mr Jagjit Singh BHATIAa, Ms Sagri SHARMAb

aDirector, Center for Development of Advanced Computing

(A Scientific Society under Ministry of Communications & Information Technology

Govt of India) A-34, Industrial Area, Phase VIII, Mohali, Punjab – 160071

Phone: +91-172-2237052-57 Fax: +91-172-2237050/51

Email: jsb@cedtm.stpm.soft.net

Website:http://www.cedtimohali.org

bProject Associate, Center for Development of Advanced Computing

(A Scientific Society under Ministry of Communications & Information Technology

Govt of India) A-34, Industrial Area, Phase VIII, Mohali, Punjab – 160071

Phone: +91-172-2237052-57 Fax: +91-172-2237050/51

Email: sagrisharma@cedtm.stpm.soft.net

Website:http://www.cedtimohali.org

Abstract There is a significant potential for delivering medical services in rural

areas of India using Telemedicine methods However, there is a continuous

emphasis on patient privacy, which is usually not a concern in traditional

consultation We at Centre for Development of Advance Computing, Mohali

Punjab have developed a customized Telemedicine solution, which overcomes the

barrier – technological as well as professional, legal and financial – to

Telemedicine We implement Telemedicine in rural areas as 70% of total

population in India is living in villages We have, as a pilot project, established

Telemedicine Technology at six major locations in India These locations were

subsequently connected to nearby districts and primary health centres to make a

Telemedicine hub Currently, our major project is to deploy Telemedicine sites at

various locations in the hilly and remote state of Himachal Pradesh During these

developments, we have faced unavoidable hurdles and tried to overcome them

with team effort, perseverance and never give up attitude This paper will shed

light on our journey from scratch to what we have achieved till date

Keywords India, telemedicine, telemedicine implementation, integrated

telemedicine application, DICOM, teleradiology, Telepathology, Telecardiology

Medical and Care Compunetics 3

L Bos et al (Eds.) IOS Press, 2006

© 2006 The authors All rights reserved.

22

1 Introduction

Successful telemedicine programs do not happen by fortuity They are product of watchful planning, levelheaded management, dedicated health care professionals and supporting staff, and a commitment to appropriate funding support capital purchases and on-going operations There is a need of multiple technologies that blend together to form a seamless system This challenge can only be achieved by formulation a comprehensive plan that covers the implementation and operation details [2]

Rapid growth of telemedicine in India is because of many reasons The country is geographically huge with villages located in remote rural areas The medical facilities are very few to serve the large population that resides in villages 75% of main health-care centres in India are located in urban areas, which serve 30% of the population So, only 25% of health care facilities hosts for 70% of Indians [1]

Interestingly Telemedicine in India is flourished and getting stronger by engineers and technologists and not by physicians We, at Centre for Development of Advance Computing, have developed a state of the art telemedicine application package that is

an outcome of a rigorous team effort and perseverance

We have established telemedicine sites at various locations in India Our first endeavor was establishing telemedicine sites at All India Institute of Medical Sciences New Delhi, Post Graduate Institute of Medical Education and Research Chandigarh, Post Graduate Institute Lucknow We expanded it in the second phase to connect three more medical colleges namely, Indira Gandhi Medical College Shimla [4], Medical College Rohtak and Medical College Cuttack

Our second effort was establishing telemedicine sites at different locations in the state of Himachal Pradesh, which is a remote and hilly state of India [5] 90% people are rural and most of them are tribal people Medical facilities there are scarce and so establishing telemedicine site in this area is a challenge for our team as well as for the administration of Himachal Pradesh

In this paper, we endeavor to present the various phases of development and the barriers we faced while establishing telemedicine sites at various locations in the state

The following objectives were kept in mind while developing this pilot project:

• To establish a telecommunication technology network which can provide a comprehensive range of high-quality health services to rural and remote areas

in India

• To run and implement successfully the Telemedicine Technology over the Telemedicine Network connecting the three locations at PGI Chandigarh, AIIMS New Delhi, SGPGI Lucknow

• To train the Doctors and patients to use the Telemedicine Technologies effectively and optimally with a view to develop their faith and confidence in these technologies

• To purchase cost effective hardware needed for transmitting data and images

of adequate diagnostic quality

• To purchase cost effective hardware needed for transmitting data and images

of adequate diagnostic quality

J.S Bhatia and S Sharma / Telemedicine Odyssey Customised Telemedicine Solution

24

Network Diagram National Telemedicine Project

Telemedicine demonstration system

The telemedicine equipment leased for the project included a PC-based computer workstation with required software, an interactive videoconferencing system with multiple cameras, compatible medical peripheral devices (such as an PC based ECG machine, Telepathology Microscope, medical film scanner, electronic stethoscope and

a micro camera), and telecommunications equipment The various systems were linked via a telecommunications network (as shown in the figure above)

3 Objective of the Project

The aim of the project is to develop and implement the customized Telemedicine Application for the rural and remote areas of Himachal Pradesh The application will enable the provision of specialized medical care, services and treatment to the patients

in the far flung, remote and inaccessible areas from the specialty hospitals where it is not possible for them to reach there in time

The objectives of the project will be as follows:

• To develop a customized Telemedicine Applications in the rural and remote areas of Himachal Pradesh for providing the specialized medical care and support to the patients at their convenience and at an affordable cost This will involve connecting the community health centers / primary health centers and block level/district level hospitals in the rural areas to IGMC, Shimla for expert advice As many as 14 such centers / hospitals are being connected in Phase I and rest in Phase II The connectivity will be further extended to PGIMER-Chandigarh over the existing telemedicine linkage

• To establish seamless connectivity over diverse communication environment

in the state

• To develop software interfaces with low cost medical diagnostic equipment so

as to offer a very low cost telemedicine solution for rural areas

• To introduce new software/hardware features in the existing telemedicine technology for developments not covered already

• To give boost to the production of low cost medical diagnostic equipments for telemedicine technologies in India

• To spread medical education among the medical professionals for their continuous up gradation at a very low cost even to far off places in rural areas

• To develop it as a pilot project for subsequent implementation all over India

4 Telemedicine In Himachal Pradesh

Himachal Pradesh is called ‘Dev Bhoomi’ the “Land of Gods” and is known for its calm, peaceful and salubrious climate and is lavishly blessed with excellent scenic location, abundance of natural forests with precious herbs and medicinal plants and snow bound peaks of the Great Himalayas

The project envisages the customized development of “Telemedicine Application” and its subsequent deployment in the rural areas As many as 24 locations have been identified for deployment of the project These range from Community/ Primary Centre

to Civil / Regional hospitals and IGMC, Shimla Due to non-availability of connectivity, it has been decided after discussion with BHARAT SANCHAR NIGAM LIMITED [7], 14 centres are to be taken in Phase I and rest of the centers would be covered in the next phase i.e Phase II All of them will be connected together The telemedicine application will comprise the basic tele-radiology, tele-pathology and tele-cardiology modules

As far as the capital equipment for the project is concerned, the endeavor is to identify the low cost equipment Each location will be provided with ECG machine, Microscope, Scanner and the required computers and communication equipment The local populace of Himachal Pradesh is yet to receive even the basic benefits of information technology in the health care sector Geographically, Himachal Pradesh is

a hilly state where the population is living in remote areas in very small groups and most of these areas are not well connected At many places the approach roads are so narrow that there is no transport available

One good thing about the state is that it has an excellent telecommunications infrastructure established by the Department of Telecommunication [8] This will serve

as an excellent infrastructure for setting up a Health Net using Telemedicine

J.S Bhatia and S Sharma / Telemedicine Odyssey Customised Telemedicine Solution

26