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We will view knowledge and its distribution very differently at the end of this decade than we did in 1990.\par All this technology can be of tremendous benefit to the Parkinson\rquote s Disease community, and the time to start working for this is now. The author describes his feelings on the matter, in the hope that:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab It will stimulate others to volunteer their views, to provoke a wide discussion of the issues\par \bullet \tab As a result of that discussion, those working in this area can co-ordinate our activities and benefit from each other\rquote s work\par \pard\plain \sb60\sa60 \f20 There are two main thrusts of this paper; what we should aim to do, and how we should go about it.\par \pard \sb60\sa60 The recommendation is we should aim to:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Encourage more people to access the Internet and join the thriving global PD community.\par \bullet \tab Publish PD related material on the World Wide Web where it can be easily accessed.\par \bullet \tab Develop channels to distribute the benefits to people who are not able to participate directly.\par \pard\plain \sb60\sa60 \f20 The quickest way to achieve this is to:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Base all further work on the Internet to achieve maximum benefit.\par \bullet \tab Keep a global perspective with regard to content.\par \bullet \tab Focus on regional/local areas in regard to people gaining access.\par \bullet \tab Co-ordinate where needed, work independently where possible.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Look for scale up wherever possible \endash \~positioning activities to gain maximum leverage so as to benefit as much as possible from limited resources.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Involve as many groups as possible so they can each contribute their own particular skills.\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 2.\tab Introduction\par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 2.1.\tab Scope\par \pard\plain \sb60\sa60 \f20 The purpose of the paper is to encourage discussion into the way Internet technology can help in the fight against Parkinson\rquote s Disease. The opinions expressed are those of the author. They are put forward to act as a catalyst for the discussion and should not be interpreted as \ldblquote The Way it Should be\rdblquote .\par \pard \sb60\sa60 The paper is not: \par \pard \fi-280\li1080\sb60\sa60 \bullet \tab A proposal or request for funds.\par \pard \fi-280\li1080\sb60\sa60 \bullet \tab A general introduction to computer networks and the Internet in general. It is assumed that those participating will have a basic understanding of the Internet.\par \pard \fi-280\li1080\sb60\sa60 \bullet \tab A sales job for the Internet, or computer networks in general. \par \pard \sb60\sa60 This paper does seek to promote discussion by considering the two questions:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 1. What do we want to achieve? \par \pard\plain \li800\sb60\sa60 \f20 2. How do we do it?\par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 2.2.\tab Distribution\par \pard\plain \sb60\sa60 \f20 Initially this paper is being distributed to anyone known to be interested within the UK YAPP&RS and PDS, some European bodies, and people who ask for it on the Internet PARKINSN list. Feel free to circulate as you wish.\par \pard \sb60\sa60 The ideas presented here are applicable world-wide, although the primary focus is Europe, as it is the author\rquote s current frame of reference. \par \pard \sb60\sa60 The author will set up a mailing list{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab Contact simon@nipltd.com}} and it is suggested that discussions take place on that to ensure active participation from all interested parties wherever they may be. Those unable to access the mailing list could forward their comments by conventional means.\par \pard \sb60\sa60 Your comments and contributions are eagerly awaited for the author has put a lot of time and thought into preparing this paper and feels there is great potential to help those affected by PD.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 2.3.\tab About the author\par \pard\plain \s253\sb80\sa60\keepn \b\f20 Technical Background\par \pard\plain \sb60\sa60 \f20 Simon Coles is currently working at New Information Paradigms (in Crowthorne, UK) with Lotus Notes and Internet technologies. He holds a MEng Degree in Information Systems Engineering from the University of Surrey, and has been active on the Internet since 1988. \par \pard\plain \s253\sb80\sa60\keepn \b\f20 PD Background\par \pard\plain \sb60\sa60 \f20 Simon has been interested in PD since his mother was diagnosed in 1984, is a member of the his local branch of the PDS, has been a member of the world-wide PARKINSON Internet mail ing list since Jan. 1994 soon after it started and had around 100 members \emdash there are now has around 1,000.\par \pard\plain \s253\sb80\sa60\keepn \b\f20 Contact Information\par \pard\plain \sb60\sa60 \f20 Simon can be contacted at:\par \pard\plain \s3\fi-180\li980\sb20\sa60\tx2780 \f20 \bullet \tab EMail: \tab simon@nipltd.com\par \bullet \tab Work phone: \tab 01344 778783\par \bullet \tab Home phone:\tab 01932 220073\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 2.4.\tab Terms used{\plain \f20\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab Many readers will be familiar with the terms used but definitions are included to assist those who may not have come across them. }}\par \pard\plain \s8\fi-2160\li2160\sb60\sa60 \f20 {\b Associations}\tab Non-medical, generally charitable and self\endash help groups that have been formed for the purpose of alleviating the effects of Parkinson\rquote s.\par {\b Gateway}\tab A piece of equipment that connects a data communications network at one location to outside services and networks, and to networks at different locations.\par \pard \s8\fi-2160\li2160\sb60\sa60 {\b Hypertext}\tab A way of publishing information that allows items of information to be connected using associated links.\par \pard \s8\fi-2160\li2160\sb60\sa60 {\b Internet}\tab All the computer networks around the world which are connected to each other. Various services run on top of the Internet, for example electronic mail (EMail) and the World Wide Web.\par \pard \s8\fi-2160\li2160\sb60\sa60 {\b Lotus Notes}\tab A software package designed to help people work together.\par \pard \s8\fi-2160\li2160\sb60\sa60 {\b Professionals}\tab People employed to help Parkinsonians; e.g. Doctors, Nurses, Physio therapists, etc. May also include the employed staff of associations if their activities within their organisation rely on their status as a professional.\par \pard \s8\fi-2160\li2160\sb60\sa60 {\b World Wide Web}\tab A hypertext system using the Internet.\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 3.\tab Basic aims\par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 3.1.\tab Objectives\par \pard\plain \sb60\sa60 \f20 At a very basic level, everyone working with PD shares the same objective - to help alleviate the suffering it causes. This can be done in three main ways:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Medical research into prevention, treatment and cure.\par \bullet \tab Direct welfare services.\par \bullet \tab Provision of information to everyone involved.\par \pard\plain \sb60\sa60 \f20 All these three involve the exchange of knowledge about PD between various parties. Sharing information is something that the Internet and other computer networks are ideally suited for.\par \pard \sb60\sa60 Initially our basic aims could be to promote:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab A series of global discussion groups for people concerned with PD. Such discussion groups would probably have to be split by subject to make the traffic manageable.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab A large, dynamic body of (hypertext) literature written by people all over the world, which would:\par \pard\plain \s9\fi-180\li1620\sb20\sa60 \f20 \bullet \tab Cover PD and related problems in their entirety. \par \bullet \tab Have a global reach, with local content as appropriate\par \bullet \tab Be accessible from anywhere in the world with equal ease.\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Form a library of PD information that could be reused for other purposes.\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Be very large. Ultimately may be all the material that has been written anywhere in the world about PD could be made available to any individual{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab This has already happened in the computer science sphere and other areas, and the impact has been dramatic.}}. \par \pard\plain \sb60\sa60 \f20 In the hope that this would produce:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab A growing global awareness in the fight against PD.\par \bullet \tab The dissemination of information about PD.\par \bullet \tab Provision of a broader \ldblquote social\rdblquote community for Parkinsonians.\par \pard\plain \sb60\sa60 \f20 The anticipated audience for this work would be anyone who has an interest in PD, i.e.:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Sufferers of PD and their carers\par \bullet \tab Friends and family of the above\par \bullet \tab People who work with the above (in all capacities)\par \bullet \tab Journalists\par \bullet \tab Students\par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 3.2.\tab Problems\par \pard\plain \sb60\sa60 \f20 There are problems when writing material about PD (or any other condition){\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab This analysis is somewhat simplistic but the basic concept stands.}}:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Catering for the differing levels of expertise and backgrounds. A doctor will want to read very different material from a typical sufferer.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab The thorny problem of not causing unnecessary distress amongst patients and their relatives by painting an overly depressing picture, but at the same time giving a realistic point of view.\par \pard\plain \sb60\sa60 \f20 Definite solutions to these problems are not probably not possible \endash \~to some extent they are issues that everyone has an opinion about, but rarely is there a solution satisfactory to all. \par \pard \sb60\sa60 That technology will allow us to side step the issue and create a resource which the reader can tailor to their own needs, by following hypertext links as appropriate:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Links can guide the reader progressively to more detail and technical discussions of the topic as appropriate.\par \bullet \tab Areas which may cause particular distress read can be enclosed within material which will lead the reader in gently.\par \pard\plain \sb60\sa60 \f20 However, that will require a change in mentality on the contributor\rquote s behalf, and initially a strong role for the editor of any material to weave contributions from many different sources into one useful finite entity. \par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 3.3.\tab \ldblquote Social\rdblquote interaction\par \pard\plain \sb60\sa60 \f20 PD can cause significant social isolation, and computer networks are an ideal tool to partially overcome that. There are two attributes of a thriving social community:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Variety \endash \~life gets boring if we only talk to people just like ourselves.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Size \endash \~communities and discussion groups have to rise above a critical mass of active participants before they become socially functional.\par \pard\plain \sb60\sa60 \f20 Fortunately there exists a very large network containing millions of people \endash The Internet. It also has the added bonus that there are hundreds of discussion groups available. \par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 3.4.\tab Are the aims achievable?\par \pard\plain \sb60\sa60 \f20 In a word, Yes! It has all been done before in other fields. Already there is a growing collection of PD related information on the Internet. At the moment this is primarily US based(naturally since the PD group started there). Other similar organisations are already providing their own material.\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 4.\tab Technology\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 4.1.\tab Benefits of very large computer networks\par \pard\plain \sb60\sa60 \f20 The value of wide area computer networks to those concerned with PD is that they are an excellent channel along which to transfer information between people. So much so, that some of our fundamental assumptions of communication are changed:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Geography becomes irrelevant \endash \~indeed, it is often very difficult to know \ldblquote where\rdblquote the corespondent or the accessing server are physically located.\par \bullet \tab Because geography is irrelevant, any work will not only benefit those in this country, but world wide and so the scale up of any work is huge.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Talking to thousands of people is as easy as talking to one person \endash \~ your words are duplicated and transmitted effortlessly. Not only are more people involved in your efforts, but the discussion is more diverse. It is surprising how different each nation\rquote s approach to PD really is.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Costs are primarily fixed. This changes the economics of publishing, and (for example) allow NIP{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab New Information Paradigms, the author\rquote s employer}} to donate space on an Internet server, precisely because it adds very little to their costs.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Specialisation is encouraged \endash One perso n can write a little bit on their speciality, another on theirs, etc. They can then be linked in a joint contribution which may be further enhanced by additional contributions. \par \bullet \tab Even better, material written for one purpose (e.g. describing the technology behind a CAT scan, written by a PD association) can be reused elsewhere (in a similar article for MS).\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Because everyone does their own \ldblquote little bit\rdblquote , it should be much easier to get people to contribute. More people are willing and able to write a page on their speciality than write a book on a much wider subject. It\rquote s a question of 100 people giving 1 hour of their time rather than 1 person giving 100 hours.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab The same technology which helps publish information also assists in creating a resource. The Internet is a powerful tool to help groups collaborate towards shared goals.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab The reader picks their own path \endash \~hypertext allows them to view the material in a way which suits them. This allows contributions to be read by many people of differing backgrounds without it being re \endash written for each audience.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet The material can be easily delivered via many channels: over the Internet; on CD ROMs; in newsletters; as printouts distributed on an ad hoc basis.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 4.2.\tab Technology available{\plain \f20\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab Note this discussion is concerned with \ldblquote Where do we put the material?\rdblquote , rather than \ldblquote How do people get access?\rdblquote . }}\par \pard\plain \sb60\sa60 \f20 Given computer networks are useful, which one should be used? This is a technical discussion rapidly becoming simpler with the ever increasing size of the Internet, but for the sake of completeness it is included here.\par \pard \sb60\sa60 There are a number of technical platforms available:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Commercial on line services e.g. Compuserve, America On Line, Delphi, Prodigy, CIX\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab BBS systems, generally based on FidoNet\par \bullet \tab The Internet\par \pard\plain \s253\sb80\sa60\keepn \b\f20 Commercial on line services\par \pard\plain \sb60\sa60 \f20 Advantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab A good method of giving access to people with limited expertise.\par \bullet \tab Often easier to set up than a proper Internet connection. \par \pard\plain \sb60\sa60 \f20 Disadvantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Generally expensive, often charge by the minute.\par \bullet \tab Audience restricted to those who have accounts on that service.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab May be restricted, by copyright or technical problems, from mirroring the material elsewhere.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Their method of publishing material may be limited.\par \pard\plain \s253\sb80\sa60\keepn \b\f20 BBS systems\par \pard\plain \sb60\sa60 \f20 Advantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Known and understood technology.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Infrastructure would be owned by PD organisations and therefore could be made available to users at low cost \endash once the infrastructure had been paid for.\par \pard\plain \sb60\sa60 \f20 Disadvantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab The infrastructure would have to be built up specifically, which causes significant problems due to the fixed cost nature of computer networks.\par \bullet \tab The audience is restricted to those who have accounts on that BBS, or on BBSs connected to it.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Multimedia publishing is difficult.\par \bullet \tab Technology wouldn\rquote t scale up too well to hundreds of users.\par \bullet \tab A certain amount of technical expertise is needed to use the systems.\par \bullet \tab Running a BBS can be a significant amount of work.\par \pard\plain \s253\sb80\sa60\keepn \b\f20 The Internet\par \pard\plain \sb60\sa60 \f20 Advantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Will scale up (it already has millions of other users).\par \bullet \tab Infrastructure is in place and being expanded.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Used for many other services, so it is likely that more people already have access .\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab It will support many different types of publishing/information exchange.\par \bullet \tab Generally available within a local phone call, no usage charges.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Information can be gatewayed to other commercial services (most on line services have Internet gateways) and private BBS systems.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab It has a truly multi-national perspective.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Administration work is spread around the world, for the benefit of many more people.\par \pard\plain \sb60\sa60 \f20 Disadvantages:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab It costs a lot to \ldblquote publish\rdblquote information on it. A permanent connection is a basic requirement. Fortunately, the NIP will donate \ldblquote web space\rdblquote , which solves the problem.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Individuals will have to pay for access. This will generally be a modest amount comparable to most other media, and could be subsidised if needed.\par \pard\plain \sb60\sa60 \f20 Although the Internet requires users to pay a regular fee for access, the overall costs to the PD community of using the rather than dedicated BBS systems will undoubtedly be less.\par \pard\plain \s254\sb240\sa60\sl240\keepn \b\f21\fs28 4.3.\tab Recommendation\par \pard\plain \sb60\sa60 \f20 It is suggested that all relevant information be placed on the Internet. Users of other technologies can join via gateways. I n particular, a web site of PD information can be created. The author would be prepared to host mailing lists for discussions on various topics.\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 5.\tab Making it happen\par \pard\plain \sb60\sa60 \f20 The problems to be overcome are:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Providing a significant amount of quality material for people to read.\par \bullet \tab Attracting an audience willing and able to read that material.\par \pard\plain \fi-360\li1160\sb60\sa60 \f20 \bullet Providing the infrastructure for the delivery of the material.\par \pard \sb60\sa60 These three problems are to some extent intertwined but require different skills and approaches to resolve. {\b \par }\pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 5.1.\tab Obtaining Material\par \pard\plain \sb60\sa60 \f20 The PD community as a whole is united in the common goal of alleviating the suffering of Parkinsonians, so they should all want to support the work. Traditionally people and organisations do not seek to make a profit from their work in this area, so making information available for free should be compatible with their motives.\par \pard\plain \s253\sb80\sa60\keepn \b\f20 Potential authors\par \pard\plain \sb60\sa60 \f20 Material may be provided by the following groups of people:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab {\b Associations} (i.e. PDS in the UK) have a large body of material in the form of ne wsletter articles and leaflets etc. Also, one of their primary aims is the dissemination of information about PD, and so they should be happy to have their material published on the Internet. If associations choose to actively participate on the Internet t hen this will be a major bonus for all concerned.\par \bullet \tab {\b Researchers} write their work up as part of their professional obligations. It would be easy for them to provide copies of their papers and other work. This would also provide another avenue to distribute their work, for which they could well be grateful. A collection of pages describing current PD research would be of value to them and, if a short layman\rquote s description were included, it would be of use to other groups as well.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab {\b Doctors and other medical specialists} have written large numbers of articles describing their work. Traditionally, they have a need to communicate with the general public and would be happy to indulge reasonable requests for articles and presentations.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab {\b Students} generally need to do some major piece of project work for their course. A friend of the author did a survey on the needs of Parkinsonians and their carers for her nursing final year project. A cousin charted the history of the PDS for her history of medicine course. Generally students are very happy to have their information made available to a wide audience where it can be of benefit not only for other students but also other people interested in PD. Hopefully as time goes on it should be possible to commission student projec ts to fill particular gaps in the available material; this form of co-operation benefits both parties tremendously.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab {\b Sufferers & Carers} often document their experiences for the benefit of others. Helen Rose\rquote s book is a good example at one extreme; the many smaller postings on the PARKINSN list with commentaries and advice show what individuals are prepared to volunteer on a more routine basis.\par \pard\plain \s253\sb80\sa60\keepn \b\f20 Potential sources of material\par \pard\plain \sb60\sa60 \f20 There are three avenues available from which information may be obtained:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Material already available on the Internet but buried in a mailing list archive somewhere.\par \bullet \tab Material which has been written for another purpose (i.e. newsletter) but can be reused.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Specially commissioned material.\par \pard\plain \sb60\sa60 \f20 Once the material has been obtained it needs to be collated into a useful form, which is a challenge \endash it takes time to weave a web (as it were). \par \pard \sb60\sa60 Fortunately, there is nothing to stop lots of people weaving little parts of the web, so hopefully something can be achieved quickly. As new contributions are made they can be linked into existing material.\par \pard\plain \s252\sb60\sa60 \i\f20 Material already on the Internet\par \pard\plain \sb60\sa60 \f20 The PARKINSN list has been running for some time and a lot of good information posted to it. It requires collating into a useful format which is really just a straight technical problem.\par \pard\plain \s252\sb60\sa60 \i\f20 Reusing existing material\par \pard\plain \sb60\sa60 \f20 Fortunately that there is a large body of literature already in existence in the form of papers, newsletter articles, brochures, leaflets etc. \par \pard \sb60\sa60 Conversion is laborious but possible, and becoming easier by the day.\par Most copyright holders will allow their material to be used because:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Many already provide their material free or at cost.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab The provision of information about PD is one of the aims of most associations and the Internet can do that for no cost.{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 { \fs18\up6 \chftn }\tab No one is going to be able make a profit from this sort of electronic publishing, so they will lose nothing by allowing the distribution of their information.}}\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Some of the contributors (e.g. the academics) would hopefully be glad of the additional channel to distribute their knowledge. The Internet is fast becoming the dominant channel for academic communication. \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab This process of open publication encourages others to contribute. \par \pard\plain \s252\sb60\sa60 \i\f20 Commissioned material\par \pard\plain \sb60\sa60 \f20 A contributor should be asked for a short article on their area of expertise only rather than a longer passage covering a wider area. i.e. lots of people asked to do a little rather than a few people asked to do a lot. It should therefore be easier to get people to write material for the Internet than for a traditional newsletter etc.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 5.2.\tab An audience\par \pard\plain \sb60\sa60 \f20 The provision a large amount of information on the Internet is only of use if it can be accessed by a wide audience. Fortunat ely, as the Internet becomes more ubiquitous, access is becoming easier and more common. Most governments consider widespread access to \ldblquote The Information Superhighway\rdblquote as being essential to their nation\rquote s well-being in the future.\par \pard \sb60\sa60 There are two ways people will benefit:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Through direct experience by accessing the material themselves.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Through second-hand experience, either via professionals, associations, or family.\par \pard\plain \sb60\sa60 \f20 The likely avenues for direct Internet access in the near future are:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Personal Internet accounts in the home \endash a popular choice for home computer enthusiasts which is likely to become more popular with non\endash computer specialists. There is a huge demand for cheap and easy Internet access from the home \endash \~the market is so big it cannot be ignored. Products to fill this niche are just beginning to appear, and will soon become more accessible.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Those unable to gain direct access may know someone who can pass the material on via CD ROM, or reprints of the Internet material.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Access provided by employers \endash \~ most employers are connecting their internal electronic mail systems to the Internet and many are allowing access for their employees. It is also entirely feasible that hospitals will provide Web access to ward staff.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Almost every University provides Internet access for students and faculty.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab There are a growing number of \ldblquote Cyber Caf\'8es\rdblquote which provide Internet access with coffee.\par \bullet \tab There is a growing political will to provide public Internet access in libraries and schools.\par \pard\plain \sb60\sa60 \f20 In addition, if the PD associations are connected to the Internet, material from the Internet can be relayed via newsletters and pamphlets. This will probably be the most important avenue for the next five years.\par \pard \sb60\sa60 This is probably the most labour intensive area of the whole enterprise:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab It involves getting people in front of computers.\par \bullet \tab Lots of people will be involved.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Action has to be taken on a local or regional basis; particulars of Internet access change from one place to another.\par \pard\plain \sb60\sa60 \f20 The best way of assuring a large audience is to: \par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Use an existing system rather than build a new one from scratch. Generally that would involve using Internet access providers. Accounts in the UK cost \'a310 to \'a3 15 a month, with local phone call access. That is a much cheaper way of purchasing access than with a dedicated system, even if access were given away free{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn } \tab If organisations feel this cost is too much for certain individuals to bear, then they could subsidise the Internet accounts.}}. \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Effort will have to be put into education and training. Point people towards an access provider and help them if they get stuck (although hopefully their access provider will deal with most technical issues) \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Encourage a vibrant on line community which people will want to be a part of.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Don\rquote t waste money building private electronic networks. Metcalfe\rquote s law{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\fs18\up6 \chftn }\tab Metcalfe\rquote s law states that a communications network\rquote s usefulness is proportional to the number of people on it squared (n{\up6 2} ). i.e. a phone system with 100 people on it is 100 times more useful than one with 10 people. Comparisons between the Internet with 30 million and a private network of perhaps 20 (or even 1,000!) are left as an exercise for the reader!}} says you will be wasting your time.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 5.3.\tab Infrastructure\par \pard\plain \sb60\sa60 \f20 Given the Internet is used as the carrier there are two issues to resolve:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Server(s) to host material and services\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Client machines for people to access the material. This is covered in the next section.\par \pard\plain \sb60\sa60 \f20 Historically, the server issue has been difficult; they require a leased line to the Internet which is not cheap. Fortunately, the author\rquote s employer, NIP, is prepared to host PD related services on the Internet, at least for the foreseeable future, so that problem is resolved. \par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 That arrangement prompts two possible concerns: \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab NIP\rquote s continuing commitment to host PD related material. Should they wish to opt out then another host can be found and the information transferred (this change of location will hopefully be transparent to users).\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab Will the author be a bottleneck? Hopefully, this won\rquote t occur e if he focuses on the areas where he can add value and leave other issues to other people. \par \pard\plain \sb60\sa60 \f20 Happily, this is one of the easiest to solve. At the moment the author can provide a server on the Internet to host all material. As long as the information is on a server connected to the Internet, any computer on the Internet will be able to access it wi th ease.\par \pard \sb60\sa60 There are three potential problems:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab The author could edit/censor information. There will not be the time or indeed the intention to apply anything but light editorial control{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\chftn }\tab If you write an article claiming that for a payment of \'a31,000 you can cure PD, I reserve the right to check your claims with an eminent doctor before I make your article available.}} . Also, there is no wish to be seen as \ldblquote The PDS web site\rdblquote . The offer is just to provide a general resource for PD information, if the PDS want an area on it (with their own branding), that\rquote s fine, but exclusiveness is not available.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab As the author is the only one with \lquote write\rquote access on to the Internet this could be a potential bottleneck. Hopefully this can be overcome by sensible use of the technology. The author won\rquote t have time to \ldblquote wet nurse\rdblquote people excessively \endash \~the offer is an Internet host, not large quantities of the author\rquote s time. \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab The arrangement is dependant on the author\rquote s continued employment with NIP. Such a situation may be protected if the server were registered with a separate name so it would be easy to move it somewhere else on the Internet should that be necessary.\par \pard\plain \sb60\sa60 \f20 It should realised that there are many other sites on the Internet with PD related material, and more will appear as time goes by. That is good and healthy. It really doesn\rquote t matter how many PD servers there are (the more the better!) or where the material is stored. It is not the intention to become the main PD site for Europe or anywhere else{\fs18\up6 \chftn {\footnote \pard\plain \s246\fi-360\li360\sb60\sa60 \f20\fs20 {\chftn } \tab Too much work for a start.}}.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 5.4.\tab Working together\par \pard\plain \sb60\sa60 \f20 It is suggested the setting up of any committees to co-ordinate things that really don\rquote t need to be co-ordinated would be timely and counter productive. In this case, geographical constraints would preclude that. However, it is suggested that the following be agreed:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab What needs to be done.\par \bullet \tab Who will do what.\par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab That a mailing list be established to discuss progress and help each other out.\par \pard\plain \sb60\sa60 \f20 If people want to set up a co-ordinating panel, the author would be happy to attend but wouldn\rquote t be keen on excessive regular meetings.\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 6.\tab Resources presently on the Internet \par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 6.1.\tab PD specific\par \pard\plain \sb60\sa60 \f20 The following PD related resources are currently available on the Internet:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab The excellent PARKINSN mailing list (discussion group) has a world-wide membership of almost 1,000. Members discuss anything to do with PD, and traffic runs at 10 to 30 messages a day. \par \pard \s3\fi-180\li980\sb20\sa60 \bullet \tab There are about 4 Web sites with PD material, although they:\par \pard\plain \s9\fi-180\li1620\sb20\sa60 \f20 \bullet \tab Tend to reflect their US origin (discussing Pallidotomy in detail but little on drug treatments for example)\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Are generally research biased\par \bullet \tab Contain very little coverage of welfare issues\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \tab This is not a criticism of these sites; they admirably fulfil their aims. It is just that they are still quite small and don\rquote t cover a wide subject area.\par \pard\plain \s254\sb240\sa60\keepn \b\f21\fs28 6.2.\tab Other medical and charitable material\par \pard\plain \sb60\sa60 \f20 A significant number of American charities are now starting to use the Internet as a campaigning and information tool.\par \pard \sb60\sa60 The Charities Aid Foundation (UK) is just about to release an Internet site.\par \pard \sb60\sa60 A number of AIDS researchers are using Lotus Notes to assist their collaboration around the world.\par \pard \sb60\sa60 Universities, hospitals and individuals are putting up material on:\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Disability in general\par \bullet \tab Neurology and neurological conditions\par \bullet \tab Disability\par \pard\plain \s255\sb400\sa120\keepn\pagebb\brdrb\brdrs \b\f21\fs36 7.\tab Conclusion/Action plan\par \pard\plain \sb60\sa60 \f20 What can we do now?\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Raise awareness.\par \bullet \tab Get influential bodies onto the existing PD discussion groups.\par \bullet \tab Develop a body of PD material:\par \pard\plain \s9\fi-180\li1620\sb20\sa60 \f20 \bullet \tab Approach organisations with existing material\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Find and encourage additional sources of information (local groups, doctors, students etc.)\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Develop a mechanism to get the material onto the Internet.\par \pard\plain \s3\fi-180\li980\sb20\sa60 \f20 \bullet \tab Make the Internet as accessible as possible to the intended audience by:\par \pard\plain \s9\fi-180\li1620\sb20\sa60 \f20 \bullet \tab Publicising the availability of PD information.\par \pard \s9\fi-180\li1620\sb20\sa60 \bullet \tab Raising awareness of the different avenues of access (personal, public, company provided etc.)\par \bullet \tab Promoting the reuse of information found on the Internet in other media, i.e. newsletters.\par \pard\plain \sb60\sa60 \f20 Comments and offers of help are more than welcome and indeed needed!\par }