Effortlessly Spreading the Word (Nov 1995)

Effortlessly Spreading the Word (Nov 1995)

1. Abstract

Computer networks, especially in the form of the Internet, are likely to be the defining technology of the mid-1990's. We will view knowledge and its distribution very differently at the end of this decade than we did in 1990.

All this technology can be of tremendous benefit to the Parkinson'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:

• It will stimulate others to volunteer their views, to provoke a wide discussion of the issues
• As a result of that discussion, those working in this area can co-ordinate our activities and benefit from each other's work

The recommendation is we should aim to:

• Encourage more people to access the Internet and join the thriving global PD community.
• Publish PD related material on the World Wide Web where it can be easily accessed.
• Develop channels to distribute the benefits to people who are not able to participate directly.

• Base all further work on the Internet to achieve maximum benefit.
• Keep a global perspective with regard to content.
• Focus on regional/local areas in regard to people gaining access.
• Co-ordinate where needed, work independently where possible.
• Look for scale up wherever possible - positioning activities to gain maximum leverage so as to benefit as much as possible from limited resources.
• Involve as many groups as possible so they can each contribute their own particular skills.

2.1. Scope

The purpose of the paper is to encourage discussion into the way Internet technology can help in the fight against Parkinson'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 "The Way it Should be".

The paper is not:

• A proposal or request for funds.
• 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.
• A sales job for the Internet, or computer networks in general.

1. What do we want to achieve?

2. How do we do it?

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.

The ideas presented here are applicable world-wide, although the primary focus is Europe, as it is the author's current frame of reference.

The author will set up a mailing list 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.

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.

2.3. About the author

Technical Background

Simon Coles is currently Lead Internet Strategist 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.

PD Background

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 mailing list since Jan. 1994 soon after it started and had around 100 members -- there are now has around 1,000.

Contact Information

Simon can be contacted at:

• EMail: simon@coles.org.uk

Associations Non-medical, generally charitable and self-help groups that have been formed for the purpose of alleviating the effects of Parkinson's.

Gateway A piece of equipment that connects a data communications network at one location to outside services and networks, and to networks at different locations.

Hypertext A way of publishing information that allows items of information to be connected using associated links.

Internet 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.

Lotus Notes A software package designed to help people work together.

Professionals People employed to help Parkinsonians; e.g. Doctors, Nurses, Physiotherapists, etc. May also include the employed staff of associations if their activities within their organisation rely on their status as a professional.

World Wide Web A hypertext system using the Internet.

3. Basic aims

3.1. Objectives

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:

• Medical research into prevention, treatment and cure.
• Direct welfare services.
• Provision of information to everyone involved.

Initially our basic aims could be to promote:

• 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.
• A large, dynamic body of (hypertext) literature written by people all over the world, which would:
  • Cover PD and related problems in their entirety.
  • Have a global reach, with local content as appropriate
  • Be accessible from anywhere in the world with equal ease.
  • Form a library of PD information that could be reused for other purposes.
  • 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.

• A growing global awareness in the fight against PD.
• The dissemination of information about PD.
• Provision of a broader "social" community for Parkinsonians.

• Sufferers of PD and their carers
• Friends and family of the above
• People who work with the above (in all capacities)
• Journalists
• Students

There are problems when writing material about PD (or any other condition):

• Catering for the differing levels of expertise and backgrounds. A doctor will want to read very different material from a typical sufferer.
• 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.

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:

• Links can guide the reader progressively to more detail and technical discussions of the topic as appropriate.
• Areas which may cause particular distress read can be enclosed within material which will lead the reader in gently.

3.3. "Social" interaction

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:

• Variety - life gets boring if we only talk to people just like ourselves.
• Size - communities and discussion groups have to rise above a critical mass of active participants before they become socially functional.

3.4. Are the aims achievable?

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.

4. Technology

4.1. Benefits of very large computer networks

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:

• Geography becomes irrelevant - indeed, it is often very difficult to know "where" the corespondent or the accessing server are physically located.
• 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.
• Talking to thousands of people is as easy as talking to one person - 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's approach to PD really is.
• Costs are primarily fixed. This changes the economics of publishing, and (for example) allow NIP to donate space on an Internet server, precisely because it adds very little to their costs.
• Specialisation is encouraged - One person 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.
• 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).
• Because everyone does their own "little bit", 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's a question of 100 people giving 1 hour of their time rather than 1 person giving 100 hours.
• 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.
• The reader picks their own path - 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-written for each audience.
• * 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.

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.

There are a number of technical platforms available:

• Commercial on line services e.g. Compuserve, America On Line, Delphi, Prodigy, CIX
• BBS systems, generally based on FidoNet
• The Internet

Advantages:

• A good method of giving access to people with limited expertise.
• Often easier to set up than a proper Internet connection.

• Generally expensive, often charge by the minute.
• Audience restricted to those who have accounts on that service.
• May be restricted, by copyright or technical problems, from mirroring the material elsewhere.
• Their method of publishing material may be limited.

Advantages:

• Known and understood technology.
• Infrastructure would be owned by PD organisations and therefore could be made available to users at low cost - once the infrastructure had been paid for.

• The infrastructure would have to be built up specifically, which causes significant problems due to the fixed cost nature of computer networks.
• The audience is restricted to those who have accounts on that BBS, or on BBSs connected to it.
• Multimedia publishing is difficult.
• Technology wouldn't scale up too well to hundreds of users.
• A certain amount of technical expertise is needed to use the systems.
• Running a BBS can be a significant amount of work.

Advantages:

• Will scale up (it already has millions of other users).
• Infrastructure is in place and being expanded.
• Used for many other services, so it is likely that more people already have access .
• It will support many different types of publishing/information exchange.
• Generally available within a local phone call, no usage charges.
• Information can be gatewayed to other commercial services (most on line services have Internet gateways) and private BBS systems.
• It has a truly multi-national perspective.
• Administration work is spread around the world, for the benefit of many more people.

• It costs a lot to "publish" information on it. A permanent connection is a basic requirement. Fortunately, the NIP will donate "web space", which solves the problem.
• 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.

4.3. Recommendation

It is suggested that all relevant information be placed on the Internet. Users of other technologies can join via gateways. In particular, a web site of PD information can be created. The author would be prepared to host mailing lists for discussions on various topics.

5. Making it happen

The problems to be overcome are:

• Providing a significant amount of quality material for people to read.
• Attracting an audience willing and able to read that material.
• * Providing the infrastructure for the delivery of the material.

5.1. Obtaining Material

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.

Potential authors

Material may be provided by the following groups of people:

• Associations (i.e. PDS in the UK) have a large body of material in the form of newsletter 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 then this will be a major bonus for all concerned.
• 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's description were included, it would be of use to other groups as well.
• 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.
• 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 projects to fill particular gaps in the available material; this form of co-operation benefits both parties tremendously.
• Sufferers & Carers often document their experiences for the benefit of others. Helen Rose'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.

There are three avenues available from which information may be obtained:

• Material already available on the Internet but buried in a mailing list archive somewhere.
• Material which has been written for another purpose (i.e. newsletter) but can be reused.
• Specially commissioned material.

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.

Material already on the Internet

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.

Reusing existing material

Fortunately that there is a large body of literature already in existence in the form of papers, newsletter articles, brochures, leaflets etc.

Conversion is laborious but possible, and becoming easier by the day.

Most copyright holders will allow their material to be used because:

• Many already provide their material free or at cost.
• The provision of information about PD is one of the aims of most associations and the Internet can do that for no cost.
• 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.
• This process of open publication encourages others to contribute.

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.

5.2. An audience

The provision a large amount of information on the Internet is only of use if it can be accessed by a wide audience. Fortunately, as the Internet becomes more ubiquitous, access is becoming easier and more common. Most governments consider widespread access to "The Information Superhighway" as being essential to their nation's well-being in the future.

There are two ways people will benefit:

• Through direct experience by accessing the material themselves.
• Through second-hand experience, either via professionals, associations, or family.

• Personal Internet accounts in the home - a popular choice for home computer enthusiasts which is likely to become more popular with non-computer specialists. There is a huge demand for cheap and easy Internet access from the home - 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.
• Those unable to gain direct access may know someone who can pass the material on via CD ROM, or reprints of the Internet material.
• Access provided by employers - 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.
• Almost every University provides Internet access for students and faculty.
• There are a growing number of "Cyber Cafés" which provide Internet access with coffee.
• There is a growing political will to provide public Internet access in libraries and schools.

This is probably the most labour intensive area of the whole enterprise:

• It involves getting people in front of computers.
• Lots of people will be involved.
• Action has to be taken on a local or regional basis; particulars of Internet access change from one place to another.

• 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 £10 to £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.
• 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)
• Encourage a vibrant on line community which people will want to be a part of.
• Don't waste money building private electronic networks. Metcalfe's law says you will be wasting your time.

Given the Internet is used as the carrier there are two issues to resolve:

• Server(s) to host material and services
• Client machines for people to access the material. This is covered in the next section.

That arrangement prompts two possible concerns:

• NIP'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).
• Will the author be a bottleneck? Hopefully, this won't occur e if he focuses on the areas where he can add value and leave other issues to other people.

There are three potential problems:

• The author could edit/censor information. There will not be the time or indeed the intention to apply anything but light editorial control. Also, there is no wish to be seen as "The PDS web site". 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's fine, but exclusiveness is not available.
• As the author is the only one with 'write' 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't have time to "wet nurse" people excessively - the offer is an Internet host, not large quantities of the author's time.
• The arrangement is dependant on the author'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.

5.4. Working together

It is suggested the setting up of any committees to co-ordinate things that really don'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:

• What needs to be done.
• Who will do what.
• That a mailing list be established to discuss progress and help each other out.

6. Resources presently on the Internet

6.1. PD specific

The following PD related resources are currently available on the Internet:

• 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.
• There are about 4 Web sites with PD material, although they:
• Tend to reflect their US origin (discussing Pallidotomy in detail but little on drug treatments for example)
• Are generally research biased
• Contain very little coverage of welfare issues

6.2. Other medical and charitable material

A significant number of American charities are now starting to use the Internet as a campaigning and information tool.

The Charities Aid Foundation (UK) is just about to release an Internet site.

A number of AIDS researchers are using Lotus Notes to assist their collaboration around the world.

Universities, hospitals and individuals are putting up material on:

• Disability in general
• Neurology and neurological conditions
• Disability

What can we do now?

• Raise awareness.
• Get influential bodies onto the existing PD discussion groups.
• Develop a body of PD material:
• Approach organisations with existing material
• Find and encourage additional sources of information (local groups, doctors, students etc.)
• Develop a mechanism to get the material onto the Internet.
• Make the Internet as accessible as possible to the intended audience by:
• Publicising the availability of PD information.
• Raising awareness of the different avenues of access (personal, public, company provided etc.)
• Promoting the reuse of information found on the Internet in other media, i.e. newsletters.

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