Innovative Uses of the Internet: The Littlefish Health Project
by Chris Fraser SRN,RMN, CCTM&H (Liverpool), RN (Australia)
( My thanks to Andrew Arch RN & Dr Janice Money for their input on this paper-any faults, mistakes etc are purely my own )
First published in the the Cybermed Catalyst March 2000
The Littlefish Health Project is an open source project with the aim of developing an electronic patient information and recall system with the prime focus being for community based primary health care providers in the developing world.
Background - How the idea, name etc developed
In the early 1990’s the idea for the Littlefish project developed from a range of influences and frustrations in my work as a Primary Health Care (PHC) Nurse in Africa & Central Australia. Each health service had its own filing system and several hours a day was spent manually recording and repeating information or physically transferring information from one book or report to another. This left less time to carry out my primary work of diagnosing and treating the people I was meant to be helping, adding a burden to an already heavy workload and yet there was so little feedback for this effort.
The idea of recording patient information once and then being able to analyse and produce the reports required by both government agencies and at the local community level was a new paradigm for me that developed over several years. It seemed the answer to the frustration my colleagues and I had with the ever-increasing proliferation of paperwork demanded by bureaucracy lay within computerisation.
As the concept grew I began seeing a number of computer applications that appeared useful in some areas and lacking in others. The applications were also predisposed towards the "First World" hospital model of health care with the primary focus being on effective patient billing systems (not one of my priorities). Coming from a PHC background I wanted something that would be useful to other PHC workers, not just clinicians, but also Nurses and Allied Health Workers in remote and rural areas; the areas with the worst health problems and lowest level of supportive health services.
The application I envisaged would be useful in not only collecting data for the health departments but would also enable local health workers to analyse the data and represent it in an accessible format. Local communities would be able to understand and learn from the information presented, providing the local health worker with a valuable educational tool. PHC workers would be supported in their decision making, with data analysis, good patient tracking facilities, appointment scheduling, workload analysis and most importantly, a very easy to learn and use system.
As I began researching for a solution that met my needs, I soon discovered that many health services were developing computer systems to satisfy their local needs, but they were being produced in different formats, for different platforms, using different protocols and codesets, aimed at specific health settings. What was also apparent was that the wheel was constantly being re-invented and the same ground was being covered again and again.
What was required was a system that everyone could use, built to agreed standards and architectures such as the Good Electronic Health Record (GEHR), Health Level Seven (HL7) and CORBAmed. Such a system needed to be flexible enough for a number of different environments and platforms.
However all this was a pipedream as the costs of software development using the conventional proprietary model was prohibitive. Then, in early 1998 a friend, Uwe Feldtman, recommended a paper called ""The Cathedral and the Bazaar." by Eric Raymond This paper was a paradigm shift for me. My view of the project from the traditionally commercial perspective - licence fees, copyright, funding, advertising time, programming costs, marketing, etc ceased. The barriers melted away and all the pieces of my particular puzzle began falling neatly into place. The spirit of the open source movement, sharing information and helping each other, closely mirrors the motivation of primary health care workers. I realised that my particular "itch" could now indeed be "scratched."
The name for the project came from a casual conversation with a family friend Dr.Niall
Quiery, with whom I had worked for many years out in the Australian bush. Returning to the
bush with his family - Niall was setting up an e-mail account with an Internet
Service Provider called Big Pond and joked that he wished he had used the name littlefish
rather than his surname because it was so easy for others to remember and spell.
Originally the project had been called Community Health Information, Management and
Evaluation System or CHIMES. I soon discovered there were other similarly named medical
informatics projects and we needed a name change. I tried lots of acronyms -each getting
progressively worse. Anyway the conversation with Niall and the term
"Littlefish" kept bubbling up in my mind. The more I thought about it the more
appropriate it seemed.
So I credit Niall for the name.
The Littlefish Health Project
The Vision for the Littlefish Project is "to create a user friendly patient information and recall system on an open source basis with the focus on use by community based primary health care health organisations in the developing world or remote and rural areas or areas of need"
The Littlefish project is intended to be a free, open source, computer-based resource for health workers, available to any health service provider who wishes to use it without restriction. Not only will it maintain patient records, it will also support health care workers in their decision making. Littlefish will contain basic information about the diagnosis, treatment, and prevention of common health problems as well as references on the web for further information.
My intention has been to have the Littlefish specifications built collectively by users. My personal view is that medical information is too important for any one individual to arbitrarily decide on its structure. I believed it important to involve and to achieve a consensus from health professionals and developers during every phase of the Littlefish project. Littlefish has been set up so that users can contribute new information and suggestions, which will then be reviewed and incorporated into the approved body of information.
For the technically minded, Littlefish is designed essentially as an intelligent graphical front end, to be plugged into back ends such as GEHR. The initial release of Littlefish will be as a stand-alone application, but there are plans for development of a web browser enabled applet version of Littlefish. For portability, Littlefish will be written in Java 2 using swing components. The licencing of Littlefish has not been finalised yet, but as previously stated, it will be an open source licence allowing users to freely review, copy, distribute and modify without restriction.
Littlefish will be network enabled, running from laptops and desktop computers. Communication with the database server or the GEHR back end will be via either TCP/IP or via mail for synchronisation purposes. The form of data encryption has yet to be finalised.
A snapshot of Littlefish
The functional specifications have been available for review and comment since August 1999. The philosophy with Littlefish is that all documentation is subject to change, and change is driven from the feedback of interested parties.
At the time of writing there were 52 organisations and individuals from 20 countries registering an interest in the development of Littlefish. The web site has been averaging 3000 hits a month since the publication of the project. Since the release of the prototype the hit rate has risen to some 5000 per month with the prototype having been downloaded 200 times up to the time of writing this document.
In February 2000, the first prototype for the Littlefish Health Project became available for downloading and review. The prototype, written by Andrew Arch, has been written in Delphi 4. The prototype is essentially a shell with very limited coding. At this stage the prototype is still very much in its formative stage, with many more forms yet to be designed and added. The prototype is seen as a vehicle for developing the layout of the Graphical User Interface. The final design will be the very much influenced by the feedback of the wider community. At this stage we hope to release updates of the prototype roughly every week, with many modifications in each release based on the feedback of the previous one or two weeks.
Over the next few months we will be developing "walk throughs" of the software against the developed scenarios. We are also currently developing a User Needs Analysis (UNA) so that we have a better understanding of our end users and to enable feed back from different users around the globe. These will also be available for download from the Littlefish Web site once completed. With the use of the walk throughs and the UNA, testing of the prototypes will not be as ad-hoc. The aim is to achieve comprehensive thorough testing, and to obtain concrete objective and subjective results back from those undertaking the testing. This in turn will result in a comprehensive, robust end product designed and tested with the full participation of the end users.
The Future for Littlefish
Littlefish has adopted a user driven open source model so it will effectively "belong" to the wider community and provides for the privacy, security and confidentiality standards that the public and health professionals demand.
Littlefish provides the opportunity for health organisations, academia, civil society organisations, small business enterprises, software houses and individuals to share and elaborate on a common body of knowledge and avoid the current problems of "information silos" and parallel development. It will encourage this by feeding back new developments or modules developed by the Littlefish Project for others to use and modify to their local requirements.
In removing constraints on innovation and licensing/price schemes, I hope the Littlefish Health Project will be a means of knowledge sharing, peer review, mutual assistance, community building and job creation.
Open Source references
Fraser C, Brown SM, The Littlefish Project: Open Source, Open Health This paper was delivered at the Health Informatics Conference 1999 in Hobart Australia. http://www.paninfo.com.au/papers/hics%2099%20presentation.htm
1. The Open Source Website
2. The Power of Openness Why Citizens, Education, Government and Business Should Care About the Coming Revolution in Open Source Code Software A Critique and a Proposal for The H20 Project by David Bollier bollier@essential.org. 1999 Berkman Center for Internet and Society (Verbatim copying and distribution of this entire article is permitted in any medium, provided this notice is preserved.)
3. The Cathedral & the Bazaar by Eric S Raymond This is the paper that influenced Netscape, Corel, Aplix IBM and other major software companies to develop on the open source model
4. The H20 Project by David Bollier
5. The H20 Project by David Bollier
6. Development, Ethical Trading, and Free Software Development by Danny Yee danny@anatomy.usyd.edu.au The author is one of the Community Aid Abroad webmasters, a board member of Electronic Frontiers Australia, and an employee of Sydney University
7. The H20 Project by David Bollier
8. Development, Ethical Trading, and Free Software Development by Danny Yee
9. Personal Notes from Dr David Nabarros Lectures. Liverpool School of Tropical Medicine
10 Personal Notes from Prof K. Newalls Lectures Liverpool School of Tropical Medicine
11..Preventative Medicine for the Tropics. By A.O Lucas & H.M.Gillies (p24)
12.Information And Communications Technologies- A Rapidly Emerging Dimension Of Development Co-OperationBy Dr. Hans d’Orville, Director, IT for Development Programme, UNDP http://www.oneworld.org/media/net/index.html
13. Development, Ethical Trading, and Free Software Development by Danny Yee
14. Setting up Shop by Frank Hecker of NetScape
15 Homesteading the Noosphere by Eric S Raymond
Open Source Kernels
The Good Electronic Health Record (GEHR) www.gehr.org,
CORBAMed, http://www.acl.lanl.gov/OMG/CD/corba.html