Info-Communication Infrastructure for Health and Community-Based Care of Elderly People

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Socio-Economic Aspects of

Info-Communication Infrastructure for Health and Community-Based Care of Elderly People

ヘルスケアおよび高齢者の

地域ケアへ向けた情報通信基盤の社会的・経済的側面に関する研究

2007 March

Graduate School of Global Information and Telecommunication Studies Waseda University

Ubiquitous Healthcare and Welfare Information System, Information Communication Industries, and Standardization II

Timothy BOLT

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Abstract

Background & Objectives

The ageing demographic trends of Japan, the UK and other developed countries are being addressed through increased availability of community-based care services for the elderly.

Currently, these are being provided primarily by social services agencies of local authorities with central government guideline and policies. This thesis examines the policies and procedures of community-based care service provision and the potential of ubiquitous data communication services to support these. The three areas of focus with strong potential for improved use of ICT services are: ubiquitous monitoring, care coordination information exchange and involvement of information carers.

This study is tackled through expert interviews, the examination of relevant projects and attendance at HL7 (Health Level 7) standardisation meetings. Additionally, a review of care service process flow exercises in the study countries was undertaken. The thesis also builds on existing research in the care services literature, eGovernment literature, economics of standardisation literature and Information Quality literature.

Chapter Summaries

Chapter 1 provides the background on the demographic and care provision issues being addressed by the thesis as well as describing the research approach.

Chapter 2 provides the results of a study to identify communication requirements and information flow patterns in the health and welfare domains which will be improved through the application of new ubiquitous information-communications technologies (ICT) services.

The methodology chosen was a set of parallel, but independent, Delphi method studies of healthcare professionals and experts in the UK and Japan. Based on an assessment of current communications patterns, information requirements and barriers within the UK and Japanese healthcare professions, 16 classes of ICT applications were identified. Of these, the later stages of the thesis focused on the applications dealing with the remote monitoring of patients and the sharing of patient records or care coordination data.

Concurrent with this was an overlapping survey on the likely barriers to the adoption of such new ICT applications and services in the healthcare sector. Among the issues addressed in this section are acceptance by practitioners, acceptance by patients, system design and financial issues. During the research it became apparent that the primary challenges to the adoption of information technologies are human factors, including administration of the trialling and deployment processes.

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Chapter 3 delves into the first of these identified potential ICT services: the remote monitoring of vital signs and related data through networks of wearable sensors, most commonly known as Body-Area Networks (BANs) or Body Sensor Networks (BSN). This chapter focused on the converging economic and market pressures along with the technological and standardisation trends in the development and deployment of remote physiological patient monitoring services through wireless wearable sensors and actuators.

Among the observed factors characterising the emerging remote monitoring technologies and service market is the mixture of modular technologies with differing rates of development and the reliance on existing communications infrastructure. Furthermore, there are significant natural barriers to entry, heavy regulation and a broadening range of potential applications which must be considered in the resulting market structure and interoperability standards.

Through this study, it is evident that a modular, horizontally layered industry structure is likely to emerge as the remote physiological monitoring industry matures. This is based on the mix of technologies and firms involved in each layer as well as the advantages which modularity and well-defined standards offer for developing a platform capable of catering for a wide range of applications.

Chapter 4 considers information flow in the community-based care of elderly people beyond the information collected through remote monitoring. The UK and Japan both have policy objectives of promoting the at-home care of elderly people, rather than relying on extended hospital admissions, in order to improve the quality of care, care recipient independence and help control costs. Therefore both have long-term plans for data sharing between the health services and care services, as stated in their respective policy documents. Process flow mapping exercises for establishing care plans have already been undertaken by experts in the UK and Japan. Using these process maps to examine the processes and communication patterns in the integrated social care and health service provision systems of England, Scotland and Japan has revealed many commonalities, but with specific local requirements. A review of relevant standardisation activities reveals the same information flow patterns in the process mappings and the proposed standardisation storyboards/activity diagrams.

Building on the process flow study and a further examination of policies and standardisation, Chapter 5 offers an examination of the socio-economic, institutional and policy pressures as well as technological trends to develop a platform architecture to support care coordination information exchanges. The care delivery patterns, changing government policy, the role of informal carers and limits of user capabilities are all considered and guide the design of the information exchange infrastructure proposed in this thesis. This is a networked messaging- based platform that focuses on flexible coordination among localised systems of independent

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agencies sharing data through standardised XML messaging schemas with common vocabularies.

A key factor is the flexibility provided by a messaging-based platform. This is because information flow and inter-agency coordination must adapt to changes in the care service participants, organisational requirements, policy guidelines and improving technical capabilities. Among the other implications of the resulting platform is that the messaging- based interaction between the information systems of separate agencies and service providers offers flexibility in accommodating the various organisations’ independent operating practices, more localised data access control systems and the ability to incorporate legacy systems and practices. Such factors and the ability to include parsers between decentralised systems is expected to be increasingly important as the range of organisations involved in the exchange of personal care information expands.

The messaging-based approach for a care information exchange architecture challenged the centralised models being sometimes applied, but supports the approach of key SDOs (standards developing organisations) working on XML messaging standards for this domain.

While no empirical cost-benefit analysis of the approach has been undertaken, this chapter includes a framework for such an assessment. Confirming the appropriateness of this proposed approach over a centralised system with empirical cost data is the subject of future work.

With the digital exchange of personal care records and remote monitoring, the information management policies and information sharing architecture issues are receiving increased attention. Chapter 6 examines the relevance of Information Quality (IQ) analysis in the design of formal and informal information exchange components of these systems. The standard IQ dimensions typically reflect a model in which the supplier passes information to the user.

However, the care coordination and remote monitoring systems being studied cover highly personal and persistent information, such as health data, vulnerabilities, scheduling, contact and financial information among others. Hence, while many of the traditional IQ dimensions are applicable, this thesis introduces a needed additional category: controllability. The additional information quality dimensions this thesis proposes for assessments in the identified ICT services are: Updateability, Interoperability, Portability, and the Ability to Delete. While these factors are often not considered in the original decision to subscribe or purchase a system, they gain importance as markets mature and competing options emerge.

Among the economic impacts of these IQ dimensions are that the lack of interoperability or portability of information resources increases switching-costs and can lock-in users to particular legacy systems, service providers or information aggregators.

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Chapter 7 offers the conclusions and a discussion of plans for future research. The initial contribution was the identification of potential ICT applications to improve communications and information access within the health services. This led to a focus on the collection of personal care recipient data through remote monitoring and the exchange of personal care recipient data through care coordination platforms.

Such services will significantly support the coordinated team care resulting from the policies intended to address ageing society demographic changes. These community-care supporting ICT infrastructure services will improve community-based care services for the care recipient, care givers and supporting organizations. This thesis bridges the socio-economic, policy and technology considerations in identifying trends for remote monitoring platform and care messaging platforms approaches.

The proposed modular, messaging-based design addresses the need for flexibility and enables easier prioritisation of information quality issues. Additionally, the messaging-based coordination between independent agencies minimised the disruption from changing work practices and business processes in deploying new ICT. Connecting existing systems through messages and parsers also minimises the need to overhaul and recode existing systems which lowers the cost of future changes.

Continued research will be needed to empirically confirm the relative cost and benefit of implementing this proposed approach over centralised systems. Likewise, further investigation into the Information Quality priorities for community-care information exchange platforms will be enabled as these systems are more widely deployed in the ubiquitous information society. Additionally, the standardisation and messaging requirements for incorporating new ICT and other services offers opportunities for continued investigation.

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Acknowledgements

I would like to express my gratitude to Professor Sadahiko Kano, who has been my supervisor throughout this research and my host while a Visiting Researcher with GITI/GITS. I greatly appreciate his support and advice throughout the years of collaboration. I will carry his guidance and example as an instructor and person with me through my career.

Additionally, I want to express my appreciation to those colleagues whom I have met while a member of Kano Lab and who have worked with me on projects and papers. In particular, I shall remember and continue the friendship and collaboration with Akihisa Kodate, Daiji Hario, Mitsuru Ishido and Masaru Sakamoto.

I would also like to thank Professor Fransman of the Institute for Japanese-European Technology Studies at Edinburgh University, where my link to GITI/GITS and this endeavour began. I appreciate his advice then and during my research in Japan.

I would like to thank the various councils, agency employees, carers and other research interview subjects in Japan and the UK who provided the necessary background for this research.

My sincere appreciation to the Japan Society for the Promotion of Science for their generous financial support of this research through a JSPS Research Fellowship.

Finally, my deepest thanks to Anna, without whose constant support I would have neither started nor completed this work. Likewise, my sincerest thanks also to my parents who have encouraged and stood behind me throughout my studies.

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Acronyms and Glossary

A&E (Accident &

Emergency)

- entry point to hospital services in an emergency situation (synonymous with 'emergency room')

at-home care - ongoing health care outside of hospitals and other medical institutions BAN

(Body-Area Network)

- a wireless network for connecting vital sign sensors and actuators BSN

(Body Sensor Network)

- a wireless network for connecting vital sign sensors and actuators community-based care - ongoing health care outside of hospitals and other medical institutions DH

(Department of Health)

- UK Department responsible for Health matters, covers all of the UK including England and Scotland

domain - a field of study or field of specialisation; e.g., medical care, nursing care, housing services, may each be considered separate domains in this study EHR

(Electronic Health Record)

- computer-based records covering the health information about an individual over an extended time

EPR

(Electronic Patient Record)

- computer-based patient medical records which are stored digitally

GP

(General Practitioner)

- physician who provides primary care, within the UK's NHS GPs act as the first access point to medical services

HIS

(Hospital Information System)

- electronic medical records and related systems for hospitals

HL7

(Health Level 7)

- a standardisation body for the healthcare domain

HL7 CBHS-SIG - HL7 Community-Based Health Services - Special Interest Group horizontal integration - extending across a particular layer of a value chain, such as developing

sensors or being a system integrator or being a service provider ICT

(Information &

Communication Technology)

- the technologies for collecting, storing, retrieving, processing and transmitting information and data

integrated care - care services requiring the close cooperation and coordination across several health or medical organisations

inter-agency - coordination between official agencies or departments of government IQ

(Information Quality)

- a measure of the value which an information product or information service provides to the user of the information

ISO/TC 215 & CEN/TC 251

- technical committees of international standardisation bodies whose remit covers health and medical equipment

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JAHIS

(Japanese Association of Health Information Systems)

- Japanese research and standardisation body in field of healthcare and welfare information systems

LTCI

(Long-Term Care Insurance system)

- Japanese government insurance programme for the support of the elderly through public sector financing and an insurance programme (enacted in 2000 with reviews every 5 years) 「介護保険」

MLHW

(Ministry of Health, Labour and Welfare)

- Japanese Government Ministry responsible for matters of health, labour and welfare

MRPM

(Mobile Remote Physiological Monitoring)

- the service for tracking the vital signs and other physiological data for patients as the move outside hospitals and home

Network Externality / Network Effect

- the increasing value of a network service as more subscribers join due to the ability to connect to more network users

NHS

(National Health Service)

- the public sector organisation providing health services in the UK; the English NHS & Scottish NHS are independent organisations

NPfIT

(National Programme for IT)

- an NHS England programme promising digital health records and a range of related services through the application of new IT

PAN

(Personal Area- Network)

- a wireless network for connecting vital sign sensors and actuators

PoC

(point of care)

- ‘point of care' or 'point of contact' - indicates treatment, services or data entry undertaken when in the presence of the care recipient

SAP

(Single Assessment Process)

- forms & processes for assess the at-home care needs of elderly people in England

SDO

(Standards Developing Organisation)

- international body which develop interoperability or quality standards for whatever their remit is

SSA

(Single Shared Assessment)

- forms & processes for assess the at-home care needs of elderly people in Scotland

ubiquitous - meaning 'present everywhere', this is used to refer to technology and network connectivity which are not tied to particular locations and effectively present anywhere

vertical integration - linkage extending up and down the value chain of an industry; for example from BAN sensors, through service provision

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Chapter 1 - Introduction

1.1 Background: Ageing Societies

The research for this thesis began by addressing the general question of the potential for mobile and ubiquitous information technologies to support the health and welfare sectors, with the focus quickly narrowing to the needs of ageing societies. The information exchange and monitoring services which form the focus of the thesis are drawn from this general study and address the specific requirements of the community-based care of elderly people. While the challenges of an ageing society are typically examined as a socio-economic, policy- influenced field of human services, there is much that ICT can do to support these services.

This thesis examines services in which the social services and health agencies share in the responsibility for the care of elderly members of society.

1.1.1 Challenges of Ageing Societies

Demographic trends in the developed world, such as ageing populations and declining birth rates, are receiving increased attention and are expected to be a major policy consideration over the forthcoming decade. Japan, continental Europe and the UK are at the forefront of these trends and all face similar challenges of providing for an ageing society. This can be seen by the increasing old-age dependency ratios¹ as shown in Figure 1.1 and statistics of Table 1.1.² While these challenges are the subject of policy interventions, they are also the focus of technological innovation as well. This includes ICT (information and communications technologies) as well as physical assistance and medical technologies.

Table 1.1 Sample Ageing Demographic Statistics of Study Countries UK

England Scotland Japan Total Population 50.1 million 5.1 million 127.7 million

% Pop ≥ 65years of age 16.1% 16.3% 19.5%

% Pop ≥ 75years of age 7.7% 7.3% 8.7%

2005 Dependency Ratio 24.4% 24.5% 29.2%

1 The old-age dependency ratio is the ratio of those 65 and over to the traditional working age population (15-64). All Old Age Dependency Ratio values are calculated using data from the UN Population Division (2004).

2 Further statistics and discussion on the ageing society demographics and policy responses in the study countries are offered in introduction to Chapter 5.

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Much work is being done on the technologies to support care services for the elderly living at home. This is based on an expectation that ICT will play a significant role in improving care services for the elderly by enabling better information sharing and communications between carers, service providers, software systems, care records, other databases, monitoring centres, sensor networks, etc.

1.1.2 Implications of Ageing Societies & Social Change

The challenges of ageing societies are being addressed in Japan and the UK. The public sector financing issues, i.e., the burden on pensions and health cost issues, are most frequently considered in the public press and the Economics literature. Within the Sociology literature, the impact on social relations and social expectations is also addressed. Among the results of policies set in motion from both the economic and social pressures is the trend to the

‘Socialisation of Care’, in which the bulk of responsibility for care services elderly people in need is shifted from the family (private sector) to the public sector. With such social transitions, the burden in the UK fell on the National Health Service (NHS) and local councils. In Japan, the transition is more recent, most clear marked by the Golden Plan of the 1990s and LTCI Act (Long-term Care Insurance: 介護保険) of 2000.

Ageing

Society Policy

Reforms ‘Socialisation

of Care’ Communications

Requirements Coordinated

Team Care

Figure 1.2 Illustration of Progression from Social Transition to ICT Requirements Figure 1.1 Old Age Dependency Ratios: Japan, the UK & Europe (1950-2050)

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With the care coordination measures of the UK government and the Japanese LTCI reforms, both discussed in more detail in Chapter 4, this ‘Socialisation of Care’ has lead to increased use of ‘Coordinated Team Care’. As depicted in Figure 1.2, this can be seen as a clear series of institutional shifts which affects the information flow and communications requirements and hence the supporting ICT service and platform requirements. The role of an ICT platform to assist the coordination of inter-agency care between the health and social services after the described transition is depicted in Figure 1.3.

1.2 Research Approach

1.2.1 Research Objectives

The objective of this thesis is to contribute to the design of ICT platforms for the support of health services, in particular the community-based care of the elderly. In addition to technology platforms and the emerging market for their deployment, the thesis examines implications for both care sector policy and technical standardisation. The studies are based on comparisons of the interaction of socio-economic, institutional, policy and standardisation factors with technological development in Japan and the UK, as the primary study countries.

1.2.2 Socio-Economic Pressures and an Institutional Approach

The functioning of markets and the direction of technological innovation are subject to the pressures of socio-economic, cultural and other institutions. Such institutions include social structures, government policies, market conditions and even public expectations. Throughout this thesis the pressure from such socio-economic, policy and other institutions within the care

Figure 1.3 Representation of the Service Linking Role for Care Coordination Platforms Care Sector

Health Sector Hospital A

Hospital B Home

Nursing

Bathing Service

Home Care Service A Monitoring

Service Clinic A

Elderly Care Recipient

ICT Platforms for Supporting the Coordination of Care

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and health sectors will be examined, as these are key drivers in the development of the technological platforms, applications and markets.

Relevant institutional differences among the study nation health sectors are briefly presented in section 2.4. Similarly, elderly care policies of the study nations are among the institutional factors discussed and considered in the analysis of Chapters 4 and 5. A specific example would be the issue of political jurisdictions, i.e., that social care systems tend to be administered more locally than national health services. This sharing of responsibility for different aspects of care is considered in the development of the proposed service platform.

While some of the institutional factors are identified during the interviews for the specific services or the initial Delphi Method study, others are taken from institutional factors identified in literature.

1.2.3 Methodology

Various methodologies are applied as appropriate in the specific studies covered by each chapter. Common to all is the use of international comparisons and consideration of the institutional factors along with a full consideration of networking and technological factors.

The specific methodologies are described at the beginning of each chapter, ranging from a set of parallel Delphi Method studies to a comparison of Process Flow Mappings to the use of Information Quality Analysis. The relevant literature is cited in each chapter.

1.2.4 Thesis Structure

The starting point of the thesis is the communication needs analyses for health and welfare domains presented in Chapter 2. This identifies communication requirements and information flow patterns which can be improved through the application of new ubiquitous information- communications technologies (ICT) services.

Remote Physiological Monitoring through wearable vital sign sensors connected in a Body- Area Networks (BANs), is the focus of Chapter 3. The converging economic and market pressures are examined along with the technological and standardisation trends in the development and deployment of these services. A likely industry structure and the standardisation implications are presented in the chapter.

Chapter 4 examines process flow mapping exercises for ‘needs assessment’ and ‘establishing care plans’ undertaken by experts in the UK and Japan. The commonalities and specific local requirements are identified along with a consideration of the potential for the international standards currently being developed.

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Both the remote monitoring and care assessment processes of the previous chapters are considered in the platform design for care coordination messaging, which is the subject of Chapter 5. These are considered in light of an examination of the socio-economic, institutional and policy pressures as well as technological trends in care coordination.

The last study, presented in Chapter 6, looks at the issue of assessing IQ (information quality) as part of coordination-care service quality. The study addresses the specific IQ requirements for such personal, persistent integrated care records. The requirements for this domain and the trade-offs between them are examined.

The thesis offers its final conclusions in Chapter 7. The relationship between the core chapters is presented in Figure 1.4.

Figure 1.4 Overview of the thesis structure

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Chapter 2 -

Communications & Information Flow in Healthcare

2.1 Chapter Summary

This chapter presents a comparative study on the information and communications patterns of the healthcare industries of Japan and the UK. This focuses on the data flow and communications requirements in various parts of the health sectors to best be then able to identify where there is potential for new mobile applications and services to be developed.

Parallel with this was a survey on the likely barriers to the adoption of such new applications and services, particularly trying to identify those that need to be considered during the development of mobile ICT projects and supporting infrastructure.

The key methodology chosen were a set of parallel, but independent, Delphi Method studies of healthcare professionals and experts in the UK and Japan. With a jointly developed Delphi Questionnaire and approach, the results of the parallel studies were then analysed together for common trends as well as national distinctions which need to be addressed in considering new mobile data applications and services for the healthcare sector. This part of the analysis was joined by research partners in the USA and Finland who also ran parallel studies, though this thesis limits itself to the UK-Japan study.

As part of the interviews for the information flow / communication analysis, implementation issues for new ICT technology adoption among healthcare service providers were also discussed when appropriate. While the adoption of new medical technology is considered an integral part of medical service provision, the adoption of communication and data storage technology is not as integrally perceived and poses additional challenges in this sector. There are key requirements for accommodating existing work practices and staff workloads that make procedural and technology changes particularly challenging.

2.2 Demand Analysis Motivation

Healthcare practitioners and technologists around the world are looking at the potential of wireless information and communications technologies to enhance their ability to offer the most immediate and relevant care possible to the communities they serve.

The parallel Delphi Studies of health sector professionals in the UK and Japan presented in this chapter examine: 1) the requirements for improved communications and information oriented applications to be developed for health services and 2) the likely barriers faced in the adoption of such new applications and services. In addition to the interviews with the Delphi Study respondents, a series of project visits and interviews were undertaken in each country to

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provide a better perspective on the technical, economic and institutional considerations for those involved in deploying ICT projects in healthcare.³

This particular analysis focuses on the human and institutional factors raised during the study of potential new medical ICT applications and barriers to their implementation. Among the key institutional issues affecting information and communications technology projects are: the structure of the health services, how medical care is accessed and the established work practices in place in medical facilities. Within the framework of sociological issues, the project examines attitudes of both doctors and patients towards communications, information flow and access to treatment, patient monitoring and records. As will be detailed, a primary result of the study is overlapping demand for certain mobile applications and digital information technologies to be available in both countries, but with quite different deployment patterns and features due to institutional differences.

2.3 Use of the Delphi Methodology

2.3.1 Choice of Methodology

A Delphi process for interviewing the industry experts was considered suitable and is generally supported by the literature for this type of predictive, qualitative study. This methodology is particularly appropriate when there is significant uncertainty surrounding the research issue and the methodology was specifically originally developed for technology forecasting. The Delphi Method is generally considered appropriate when particular experts are believed to be better able to predict trends or assess problems than quantitative or theoretical approaches.

3 This Delphi Study was conducted as part of the mCASET Collaborative Research Project in which parallel studies were conducted by partner institutions, including GITI of Waseda University and the JETS Institute of Edinburgh University, with joint-comparison made at various stages.

Figure 2.1 Schematic Representation of a Typical Delphi Study Process

conduct first round interviews

collate the panellists’ responses

get feedback on previous proposals

as many rounds as appropriate design & test initial

questionnaire

final analysis [potential consensus]

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The Delphi Methodology involves a structured sequence of interviews / questionnaires and feedback targeted at a limited number of experts in the issue being studied, as depicted in Figure 2.1. These studies are designed such that one expert’s responses and opinions should not influence views of others. Therefore interviews are conducted completely independently and at separate times, completely opposite to how brainstorming sessions and focus groups are conducted.

Other key points include that responses are both internally and externally anonymous⁴, so neither specific opinions nor panel conclusions are associated with any individuals or organisations. This leads to a likely wider range of less conventional contributions and it is also much easier for the experts to change opinions without losing face after seeing other contributions from the round.

There is also an increased ability of all participants have an equal voice in the outcome since they do not experience the interpersonal dynamics that occur in an in-person meeting or where ideas can attributed to known experts. This aspect was particularly important in this study because of the implicit hierarchies within the professionals of the healthcare sector and related industries, i.e., as with the doctor-nurse relationship.

Although valuable, another less directly significant features of the Delphi Method is that the group consensus can be reached without having to assemble the entire group in the same ‘time space’, leading to a higher participation rate than when one must coordinate schedules.

2.3.2 Structuring the Research Question

To best develop the content of the actual questionnaire, a meeting was held to completely refine the research topic and structure the analysis.

The first step was to define the research question. This was followed by identifying what would need to be known to answer that question. This second level of questions are identified as the investigative questions. To answer these investigative questions, there are data collection questions which must be answered, identified as measurement questions. The generic version is presented in Figure 2.2 and the questions covered by this study are shown in Figure 2.3.

4 Internal anonymity refers to the fact that other subjects of the study do not know from who any contribution came, unlike in brainstorming and other group consensus oriented methodologies. Given the uncertainty and opinion orient nature of the subject being studied by the mCASET Project and other Delphi studies, the external anonymity is also considered important to be assured the participants feel secure in their contributions.

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Figure 2.2 Generic Structuring of Research Question

Research Question

Investigative

Question #1 Investigative

Question #2

Investigative Question …

Measurement Question #1

Measurement Question #4

Measurement Question … Measurement

Question #2

Measurement Question #5 Measurement

Question #3

Measurement Question …

Figure 2.3 Investigation Structure for Mobile ICT Application in Health Applications Research Question:

What is the future of Wireless Technologies in Healthcare?

What are the Organisation and User factors?

Current Status of Information Flow.

Including Info &

Comm Problems

Organisational Barriers in Tech.

Adoption

Far Future Information flow

(5-10 years) Near Future of

Information Flow.

(after issues solved)

Questions for Delphi Study

What are the Technology

factors?

Technology / Technical

Barriers

What are the Technology Trends?

What services will be available in the

future?

What is the current Technology?

What projects are currently applying such technology?

What will the Market Structure be?

Industry

Value Chain Companies’

Business Models Barriers /

Constraints:

Legal, Social, Political, Economic, Cultural, etc.

Could be partially addressed in Delphi Study

What External factors are there?

Alternatives

Note:

In additional to the health industry investigative issues which can be addressed by the Delphi Study, some of the external barriers to adoption may be identified by the industry experts responding to the questionnaire (as denoted by the dotted circles).

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2.3.3 Content of the Delphi Questionnaire

As mentioned earlier, the questionnaire was to be focused around the healthcare sector’s information and communications requirements, and not the communications technology developments which might be applied to these. Additionally, it was recognised that the healthcare experts are the best informed about their role in the representative industry and the information they use, while the joint-analysis with the international collaboration partners are best suited to the assessment of the ICT technologies issues.

The first round of the Delphi Study focused purely on each respondent identifying major forms of communication or the use of information within their sphere of the healthcare sector.

Then for each of these forms of communication or usage of information, the pattern of questioning adopted in the Delphi Study is shown in Figure 2.4.

The Delphi Study will therefore gather qualitative data for the above four categories for each major information / communication format identified by the experts.⁵

The sequence will be such that first Section I questions will be asked for all forms of communication / information discussed by the expert. After all of the Section I questions are answered, then the interviewer will ask about the barriers / problems / limitations of each (Section II). The interview questioning will then proceed through Section III and then Section IV questions. A copy of the verbal questionnaire used by the interviewers in the Japanese and UK studies is attached to the thesis as Appendix A. The intent of the questions is to identify the following:

5 Although this description is intentional kept general, for clarification the types of ‘information’ or

‘communication’ mentioned here are at the level of prescriptions, patient monitoring, ambulance approach / location information.

Characteristics of this information / communication if problems / barriers

are solved

What are the ‘Next Steps’ for developing this

form of info / communication Barriers or

problems that limit the use or characteristics of

the information Current

characteristics of each information or

communication type

Section I. Section II. Section III. Section IV.

Figure 2.4 Structure of Questionnaire for Practitioner Experts

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Section I. - Current characteristics of current information & communications

(Respondents are asked to identify forms of communication and type of information used / transferred in their work in the health sector and then answer about each of the following characteristics of the information.)

A) Content of the information / communication (Kind or type of information) B) Flow of the information / communication (Patterns of communication,

Source/Destination)

C) Presentation or medium of the information / communication (format, 5 senses) D) Accuracy of the information / communication

E) Timeliness of the information / communication

Section II. - Barriers / problems in the optimal use of the information / communication (Although not explicitly asked for each, as will be explained to the respondent prior to this section, "II." covers any perceived barriers to adoption including those internal to the organisation, legal, social, political, economic, environmental, cultural, etc.)

Section III. Characteristics of information & communications in the Near Future when these barriers are overcome

(The respondent is asked to envisage each of the previously described forms of information &

communications after the barriers listed in section "II." are overcome.) Section IV. Next Steps

(Here the respondent is asked to either describe incremental improvements or a visions of the optimal scenario for the information / communications which was listed)

2.3.4 Use of Open-Ended Questionnaire

It was decided not to use an extended list of specific questions, but rather try to maximise the scope for the panellists to identify information and communication transaction issues within the representative industry which could benefit greatly from the ICT support of communications patterns and information flow. Additionally, with the questioning structure chosen, the barriers and problems raised tended to be relevant to specific information / communications forms which the respondent considers important and included for consideration, rather than being a series of more abstract and independent questions. These questions aimed to reveal organisational and user issues, as well as some of the external barriers to effective information flow and communication.

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2.4 Health Service Contexts in the Study Nations

The structure of the health services is key to understanding what role communications and information play within these. While both the British and Japanese systems have overlapping goals and are government supported, there are very significant differences in how healthcare is accessed, administered and allocated. This section specifically outlines some of those differences which directly impact the demand for mobile and wireless ICT applications, services and the deployment of these.

2.4.1 Accessing Primary Care

The most noticeable and key difference is that, apart from emergency room admissions, all patient access to the system in the UK is through the General Practitioner (“GP”, a specific doctor or practice with whom the patient is personally registered). On the other side, in Japan most healthcare care treatment is accessed through local hospitals or clinics. Japanese hospitals have open consultation hours when doctors are available in a primary care role. This is in addition to the conventional surgical, specialised and emergency services that the hospitals perform.

In the British NHS, each patient is registered with a GP who takes responsibility for on-going routine healthcare, long-term medical records and referrals for access to specialists.

Conversely, in Japan the patient has the option to go directly to a hospital for any treatment or consultation. While in practice the Japanese tend to repeatedly attend the same hospital open appointment sessions, the system is not oriented around repeated scheduled appointments but rather on more of a ‘drop-in’ basis. In these hospitals, one generally does not have a particular doctor assigned to any particular patient. (This is by no means universal, as patients can request repeat appointments with the same doctor. Such continuity is more common at small hospitals and particularly among the elderly.) There are also clinics, which act more like the British GPs or American family doctors, but this is also still very much oriented around a drop-in visitation system without the registration and sense of ‘ownership’ of a patient’s long- term care.

While basic patient records in the UK remain with the patient’s GP, in Japan patient records are left at the hospital where the consultation occurred. If the condition is not serious, these would not be moved with the patient; however, in serious cases these are usually given to the patient to take to the next hospital.

2.4.2 Access to Specialist Care

As, mentioned briefly above, the British system also has a very strong basic structure of the GP serving as the ‘gatekeeper’ to any specialist care. Apart from ‘Accident & Emergency’

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(A&E) admissions to hospitals, all specialist services must be referred by the patient’s GP.

For the duration of the patient’s treatment with the specialist or consultant, there will be records kept at the hospital or specialist facility. At key points or the conclusion of the treatment by the specialist, letters will be mailed to the patient’s GP with summary information on the condition and treatment, generally to be stapled into their existing records.

The specialist will keep the bulk of the records for such procedures as well as be directly responsible for a continuing series of follow-up visits.

If a patient perceives a need for specialist care in Japan, going through the local hospital for a referral to a relevant department is an option, but so is directly contacting the desired department or clinic. While most Japanese hospitals overlap in many of the services they offer, it is also common for one hospital to refer patients to a specialist hospital as well.

A simplified representation of the impact of the different access to primary care and specialist care between the UK and Japanese health institutions is provided in Figure 2.5 to offer an indication of the communication and information flow impact of these institutional factors.

The GP ‘gateway’ system is perceived as a means to maintain organisation of a patient’s overall health as well as valuable tool for controlling costs by allocating specialist resources appropriately. This practice of the GP deciding what specialist access should be provided contrasts starkly with Japan, where the incentive to only use required services is a financial incentive based on patient co-payments. The rate for most treatment is 70% coverage by the national health service and 30% from the patient, however depending on the procedure it could be an 80% / 20% split between the government and patient. (For some private hospitals, patients may be required to cover more than the standard 30%.)

Figure 2.5 Institutional Differences in Health Service Access & the Resulting Formal Medical Information Flows

UKUK

Tests

Specialists Therapists

GPs

(general practitioner)

Patient

Japan Japan

Clinic

Doctors Specialists Therapists

Patient Care access relationships

Typical formal medical information flows

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2.4.3 Health Sector Structure

In addition to the above issues, the relationship between the hospitals impact the flow of information and communications requirements. The grouping of hospitals, and also Primary Care Facilities, into regionally-based ‘Trusts’ structure and the use of GPs as ‘gatekeepers’ to treatment within the UK health service have a significant impact on the communication and data flows through the system. One of the key implications is that any potential ICT applications and services needs to consider the British system’s inter-hospital and multi-tiered communications requirements more than in the Japanese hospital-oriented system.

The results below were collected as part of an anonymous Delphi Study and hence the opinions and observations are not attributed to particular respondents. Generally, the views are aggregated opinions for each of the issues identified.

2.5 The Demand Analysis

The results of the study being presented offer an examination of the areas where each nation’s health practitioners desired improved communications or access to information. This was a very broad ranging exercise to identify both the types and patterns of communication used in the healthcare field. Key in these interviews was not just identifying the patterns of communication, but also addressing the barriers and potential improvements in information flow faced.

Additionally, these interviews were not limited to the clinical requirements of patient care, but also covered administrative and logistical requirements since these tend to overlap with those of other industrial sectors. Many of the resulting issues are based on information transfer procedures in place in the various facilities where the interviewees worked or the issue of passing data between institutions. This is divided into the three primary service environments:

Patient Care, Hospital Laboratories and Emergency Care (Ambulance Services). The overall impact of the raised communications issues is then considered on the development and deployment of new wireless communications and data technologies in healthcare.

The health professionals interviewed included doctors, nurses, administrators, emergency medical personnel and others within the healthcare provision chain. After the interviews in both nations, results were compared, with the conclusion that, although there a major differences in the healthcare provision models adopted by the UK and Japan, the actual information / communications needs and difficulties do overlap greatly. These will therefore be presented together, with nation specific observations included.

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The purpose of the interviews with the health professionals was to identify their data usage and communication requirements along with assessment of the barriers to accessing the information they require so as to understand the potential offered by specific mobile and wireless ICT applications in this and other fields.

2.5.1 Patient Care Environments

This section discusses the result of the information and communications patterns in hospitals and primary care facilities where patient interaction occurs. As therefore expected, the primary issues raised here involved patient records, scheduling and tracking of people and objects.

Issue 1) Patient Records

A key aspect of the information flow in the hospital and primarily care facilities is the patients records. These are often a source of trouble in the UK as the data is usually entered on the

‘charts’ by hand and stored in folders. The use of folders with paper patient records was repeatedly criticised by the study subjects due to:

•difficulty in sharing paper records between practitioners

•sorting and searching data for trends and studies

•misplacement of paper notes

•legibility of hand-written notes

•difficulty in tracking procedures for scheduling, billing, etc.

One practitioner not only spoke of notes lost due to being misplaced, but also from the notes just falling out of the patient files. Still the general response appeared to be that the system for transferring paper records between wards and duplicating records for external and internal use tended to be organised, but inefficient.

Cases of electronic medical records (EMR) system deployments, with varying degrees of success, were also included in the study. In these, one tendency was to duplicate information on both the ‘e-chart’ (the term used primarily in some of the Japanese hospitals) and on paper.

This is usually attributed to the e-charts being considered difficult to customise or not Information

Sharing &

Communication Requirements

Necessary Information &

Communication Services

Information Flow &

Communications Applications

Supporting ICT Platforms

&

Infrastructure

Figure 2.6 Role of Demand Analysis in identifying Information & Communication Requirements Demand Analysis of Chapter 2

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convenient for ‘point of care’ (PoC) usage. As too often implemented, the patient data is hand-written and then must be duplicated for entry in the electronic records. In Japan, cases were discussed in which nurses where required to engage in the data entry at nursing stations during their ‘free-time’. In the UK some hospitals departments had secretarial pools for typing dictated patient notes from surgeon and certain other doctors.

At the other extreme was the completely different strategy implemented at Kameda Hospital in Chiba Prefecture, Japan. During a visit to Kameda Medical Centre, the Executive Vice President for Administration, John Wocher, described how Kameda is entirely paperless and film-less and how all data entry is conducted with the patient present. Here the strategy is to completely minimise duplication of effort, by having all patient data entered into a chart database via laptops throughout the hospital. There implementation strategy of Kameda’s system will be reviewed in the deployment section of this paper, but one issue was the concept of making the templates flexible for the data entry and also the immediacy of the data entry. Not only did this reduce redundant effort, it reduced transcription errors.

Issue 2) Inter-facility Transfer of Data

Although not as relevant for Japan, another issue raised in the hospital and primary care relationship for the UK is the return of patients to their primary care physician after treatment by the hospital staff. The patient records of the hospital procedures remain with the hospital and only a summary “letter of discharge” is sent on back to the patient’s GP. The UK research did have one doctor feel this was efficient as otherwise there would be issues of sorting too much data and overload from that hospital information not relevant to the patient’s long-term continued health. However, the majority expressed the desire for summary access to the information, but the ability to search deeper without having to engage in bureaucratic requests to the hospitals. Additionally, the UK system often finds a delay of two weeks between discharge and the GP doctor getting the hospital report.

In Japan, as everything is oriented around the hospital and the patient usually enters the hospital system with their first contact and through the follow-up, there is less of this kind of data transfer issue. If a patient changes to another hospital for the same sickness, they are meant to submit to a letter of introduction issued by the doctor who was first consulted for national insurance accounting purposes. Although faxes and phone calls are also used, letters with summary patient information dominate the inter-facility patient data transfers between hospitals in Japan.

While this project focuses on the wireless application potential, given the range of proposed applications the information and patient record storage system and information transfer procedures is both relevant and of interest. There are also complaints of pharmacists not

Info-Communication Infrastructure for Health and Community-Based Care of Elderly People

Socio-Economic Aspects of