Electronic Citizen Health Information Passport: Opening Doors in the Information Age

Tony Carroll, BSc(IT), MSc(Econ), FHRIM

Introduction

The speed at which a technology diffuses is often greater than our ability to absorb its impact. The Internet is one of those technologies that came out of the latter half of the 20th century and inadvertently challenged the way in which society conducts its business at every level. In bringing information to the fingertips of those citizens fortunate enough to live on the right side of the digital divide, the Internet has also brought new responsibilities and dangers that are difficult to comprehend and restrain. Such dangers include data protection, security, confidentiality, and the wider issues associated with consent.1

The Internet has become the primary source of information for many healthcare consumers. In the United States of America (USA), more people go online for medical advice on any given day than actually visit health professionals.2,3 Up to 40 percent of Europeans use the Internet to find health information.4 However, in addition to seeking information, consumers want to have a voice in decision making when it comes to personal health matters.5

Consumer health informatics (CHI) can be defined as the "Integration of consumer health information and information technology in an environment of shared healthcare decision making that supports effective self-health action."6 Although a relatively new specialty, the first CHI conference was held in 1993 while a model for CHI can be framed in systems theory.7,8 In recent times, the specialty has matured and can now provide a real basis for addressing the issues and concerns of citizens using information technology (IT) and the Internet to improve their health and well being.

Unfortunately, the quality of health information varies greatly on the Internet. This was highlighted by the European Commission eHealth 2002 Action Plan,9 which urged member states to assure the quality of Internet-based health information. However, if we are to liberate and empower citizens through the use of the Internet then we must train them appropriately. This paper describes a programme that has been designed to train citizens in health information management (HIM) and associated techniques. It will be available in various delivery formats to meet the needs of citizens and transcend the digital divide.

The Passport

The electronic Citizen Health Information Passport (eCHIP) is a pan-European initiative that is being developed to provide European citizens with the necessary toolset to access health information resources electronically. The partners include some member countries of the International Federation of Health Records Organisations and The Dublin Institute of Technology. The eCHIP Programme consists of eight modules:

  • Consumer Rights
  • Foundations in Health Information Management (HIM)
  • Data Protection
  • Freedom of Information
  • Information and Communications Technology (ICT)
  • Health Sciences Overview
  • eGovernment and eHealth
  • European Healthcare Management Systems.

The goal of the eCHIP Project is to develop appropriate courseware that can be delivered in a number of mediums. Although primarily available in electronic formats, it is also envisioned that the programme will be available in paper format and may be distributed through different channels.

The eCHIP programme will be accessible by all European citizens with Irish citizens becoming the first cohort of users. The programme will be self-taught with appropriate mentoring available through call centre services and other help facilities. Accreditation will be obtained following successful completion of the course. It is envisioned that accreditation will be done through an appropriate recognised European body that will also have responsibility for ultimately managing all aspects of the programme. The course will be available free of charge.

Progress to Date

Eastern Health Shared Services (EHSS) has taken the lead role in developing eCHIP. A detailed literature review of the subject domain and a high-level market analysis was undertaken during 2003. Draft content for two of the modules was also written. With the aid of funding from the Irish Information Society, a full working prototype of the eCHIP programme was developed for both the personal computer (PC) and the personal digital assistant (PDA). The prototype has been demonstrated at a number of conferences and has also provided the basis for further development work.

Next Steps

The eCHIP programme remains at the conceptual stage. In going forward, there are a number of milestones that need to be completed, all of which combined provide the roadmap for transforming eCHIP into the consumer guide for better health information and enabling net-liberated citizens. These include the following:

1. Determining the health information requirements of citizens

It is documented in the literature that citizens go to the Internet to access health information but other than anecdotal evidence, there is little concrete evidence of their experiences or the gaps they have found. There is, however, documentary evidence to suggest that health information on the net is often suspect or bias.10,11

This milestone will require a detailed review and evaluation of existing citizen health information services including current Web sites, portals, relevant e-learning programmes and other related services. A specific goal will be to ascertain the learning experiences of citizens using these resources. In addition to using secondary data, it may be necessary to commission primary research.

2. Product Design

The primary purpose of this milestone is to examine the best ways of delivering the programme. A number of models will be examined that reflect best practice and provide innovative and effective methods of engaging with consumers. Specific emphasis will be placed upon enhancing the learning experience and providing the necessary support mechanisms for self-study.

Certification and accreditation must also be considered together with the relevant technical standards associated with e-learning and traditional mediums. The specifications for delivering the programme on different technology platforms, such as digital video disk (DVD), compact disk-read only memory (CD-ROM), and digital television, must also be addressed during this phase.

3. Marketing and Branding

From a conceptual perspective, eCHIP seems to be appealing as a product. However, this appeal is based purely upon feedback from those who have been closely associated with the project from the outset. Formal market research needs to be undertaken to determine specific consumer behaviours and their opinions in relation to the development and marketing of the programme. A key deliverable from this work will be a comprehensive marketing strategy that will also establish a brand identity for the programme.

4. Implementation

There are a number of implementation matters that need to be addressed. These include the following:

  • Intellectual Property Rights (IPR): It is envisaged that Eastern Health Shared Services and its consortium partners will own the IPR. However, the implementation of the programme may result in some aspects of the IPR being owned by the program developers and course writers. This would not be a desirable outcome, but the legal requirements associated with the IPR need to be fully explored.
  • Delivery Models: It is assumed that the programme will be delivered on a number of technology platforms. The costs and licensing arrangements associated with these deployment options will need to be determined. The ultimate goal will be to provide the programme free of charge to citizens, but the method of sponsorship, including private, governmental, and European Union (EU) needs to be confirmed.
  • Distribution Strategy: The distribution channels and associated issues must also be addressed.
  • Certification and Accreditation: The programme has to be formally accredited if it is to have any standing in the international community. Those citizens who take the programme will require appropriate certification upon successful completion. Finally, the programme itself will require constant updating and validation. These important issues must be addressed before the programme is made available.

5. Courseware

Although some content has been written for the prototype, the courseware needs to be developed for each of the programme modules. This needs to be done for appropriate standards and reflect the requirements to deliver the programme through a number of mediums, including electronic and traditional paper-based formats. It is anticipated that an editorial board will be established to manage the courseware creation, which will be written by a panel of experts. While the full syllabus has yet to be finalised, the following gives a high-level indication of the subject matter to be addressed in each module:

Module 1 Consumer Rights

  • Legislative Framework
  • Consumer Rights in Healthcare
  • Appeals and Remedies

Module 2 Foundations in Health Information Management

  • Principles of Information Management
  • Library Sciences Overview
  • Sources of Health Information
  • Best practice in "How 2"

Module 3 Data Protection

  • Legislative Framework
  • Data Protection in Healthcare
  • Consent and Confidentiality

Module 4 Freedom of Information

  • Legislative Framework
  • Basic Principles
  • FOI & Healthcare

Module 5 Information and Communications Technology

  • Basic PC Skills
  • Internet Training (including search tools)
  • Relevant Software Familiarisation

Module 6 Health Sciences Overview

  • Introduction to Anatomy and Physiology
  • Medical Terms and Acronyms
  • Health Services Personnel

Module 7 eGovernment and eHealth

  • Background and General Principles
  • Working examples of e-Government
  • Principles of e-Health

Module 8 European Healthcare Management Systems

  • Introduction to EU Health Systems
  • Irish Healthcare System
  • Practical Guides to Health Services
  • Entitlements and Rights

The development and implementation of eCHIP is a significant undertaking that will be difficult to achieve without the input from the relevant experts. In recognising its shortcomings in some of these areas, EHSS has gone to public tender to source a partner or partners for general consultancy, courseware authoring, and development. It is anticipated that these phases will take six to eight months to complete and that the eCHIP programme will be available to the public in June 2005.

Conclusions

The eCHIP programme has been designed to address the significant deficit that currently exists to provide quality training in health information management for European citizens. This holistic programme will result in enabling informed citizens to make the right choices about their potential health treatment (s) in the information age. This will save the patient time and may even save his life. For the health professional, it will assist in a reduction in the practice of defensive medicine and should also result in some savings to the health system as a whole, because patients will be better informed and more inclined to access only those services that they really need.

About the Author

Tony Carroll is Director of Information and Communications Technology Services at Eastern Health Shared Services in Dublin, Ireland.

Acknowledgements

The author would like to acknowledge the support provided from the Irish Information Society and the Department of Health & Children in sponsoring Phase 1 of the Project.

I would also like to acknowledge my colleagues Caroline O'Flaherty, Dennis Prior, and Lesley Smith from ICT Services for their commitment and contributions to the project.

Endnotes

  1. A&L Goodbody. "Healthcare." A Practical Guide to Data Protection Law in Ireland.   Dublin: Thompson & Round Hall, 2003 Pages 98-27.
  2. Fox, S and L Raine. Vital Decisions: How Internet Users Decide What Information to Trust When They or Their Loved Ones Are Sick. Washington, DC: Pew Internet and American Life Project, May 22, 2002, Pages1-43.
  3. Health Information and Management Systems Society. "Wired Consumers." HIMSS HIT Forecast 2003-2007: The Digital Hospital. Chicago: Health Information and Management Systems Society, 2003, Pages 22-26.
  4. Wilson Petra, Christine Leitner, Antoinette Moussalli . eHealth Research Report 2004 Mapping the Potential of eHealth, Empowering the Citizen through eHealth Tools and Services. Maastricht: European Institute of Public Administration, 2004. Page17.
  5. Health Information and Management Systems Society. "Societal/Cultural/Demographic Trends." The Healthcare IT Environment: Strategies for Providers and Vendors. Chicago: Health Information and Management Systems Society, 2001, Page 9.
  6. Ball Marion J, Kathryn J Hannah, Susan K Newbold, Judith V Douglas (Editors). Nursing Informatics: Where Caring and Technology Meet, Third Edition. New York: Springer-Verlag, 2000. Page 330.
  7. Ball Marion, Rosemary Nelson (Editors). Consumer Informatics: Applications and Strategies in Cyber Health Care. New York: Springer-Verlag. 2004. Preface.
  8. Ball Marion J, Kathryn J Hannah, Susan K Newbold, Judith V Douglas (Editors). Nursing Informatics: Where Caring and Technology Meet, Third Edition. New York: Springer-Verlag, 2000. Page 329.
  9. European Commission. European Commission Communication (2002/667) Brussels: European Commission, 2002.
  10. British Computer Society. "The evaluation of internet healthcare resources." Proceedings of HC2002 Current Perspectives in Healthcare Computing. Guilford, UK: British Computer Society, 18-20 March 2002.
  11. Shortliffe Edward, Leslie L Perreault (Editors). Medical Informatics: Computer applications in Healthcare and Biomedicine. Second Edition. New York: Springer-Verlag, 2001. Pages 409-419.

Source: 2004 IFHRO Congress & AHIMA Convention Proceedings, October 2004