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Health Information Forum: Working together to improve access to reliable information for healthcare workers in developing and transitional countriesWorkshop 5: OPEN FORUMVenue: British Medical Association, Tavistock
Square, London, WC1H 9JR Contact: Dr Neil Pakenham-Walsh Telephone:
01865 249909 E-mail: [email protected]
Speakers: Other participants: Health Information Forum: Objectives
Special objectives of Workshop 5
The meeting was preceded by a poster session featuring a wide range of organizations and activities across the `health information community'. Speaker 1: Peter Bewes (Continuing Medical Education, Uganda) Medical Literature Production: The Basic Minimum I have been involved in the production of Medical Literature of one kind or another for over 26 years. The technology involved has varied from booklets produced on manual typewriters using Gestetner wax stencils (diagrams inserted by hand using old ballpoint pens as styluses and fine sandpaper behind the wax!) right through to manuals on surgery and anaesthesia printed by a major international publisher using computer aided typesetting and a first-class artist. However, the Uganda Continuing Medical Education programme produced special challenges which are worth looking at. Firstly, to begin with, there was no definite promise of financial backing, so the capital outlay had to be within the size of a retirement lump sum! This involved the purchase of a a new Diesel Land Rover (equipped with long-range fuel tanks and a winch), a photocopier, an electrical generator, a 286 laptop computer, with DOS software (Wordstar, Timeworks, Publisher II Pagemaker), a hand scanner, a bubblejet printer, and other items coming to 18,000 pounds overall. The methods we followed:- 1. Find out what is needed, and what is wanted. We visited all 89 hospitals in Uganda. We looked at their `libraries' and assessed how much medical information was required to improve their practice to acceptable levels. We also wrote a letter to each hospital along the following lines: "Here is an article on the management of septic hips in children. I hope you find it useful. Would you like a similar article in future on a topic that concerns you? If so, please write in". This produced a good response, with requests (in the first month) for articles on severe burns of head, hands and feet, on meningitis in children and adults, on stab wounds of the chest and abdomen, and on dyspnoea in children. 2. Find out what is feasible – and what is not feasible - with the limited infrastructure available. 3. Write articles as requested, or commission them from those with the specialist knowledge which I lacked. Any pictures which might prove necessary were drawn with pen, brush and ink if there were no other sources, then put into digital form using a hand scanner. (Over 500 such pictures have been stored on disk). 4. Lay out the text and pictures. 5. Print out the articles, the abstracts and an accompanying newsletter on the bubblejet printer. This has a special advantage over laser printers in that the ink cartridges can be refilled with `Quink' ink without any danger of harming the printer, and with consequent great savings in cost! 6. Get the printed sheets (printed one side only) to a photocopier and have them printed properly collated (i.e. sheet 2 on back side of sheet 1 in each article) in enough copies to ensure each hospital gets one. 7. Insert into large A4 envelopes (material is much more likely to be read if it is received unfolded!) and address them. 8. Distribute. We found that for one hospital, the postal system worked; for another, the Missionary Aviation Fellowship or the Flying Doctor service would deliver them; for another, you would give it to the bus driver (perhaps with a bottle of Coke!) and he delivers it; for a mission hospital, the headquarters of the mission will oblige. As a result we achieved a near 100% success rate. 9. To produce a book, much the same is done, and all the pages have to be formatted to fit an A5 size book with adequate margins. We produced a 76-page book, and the final cost was under two dollars per book, including illustrations. 10. If you have commissioned written material, it is quite important to have agreed with the author that you may edit it and get it into `House Style'. The style has to vary according to the intended audience. Something for doctors could be in fairly ordinary `medical English', whereas something simpler would be appropriate for nurses and Medical Assistants (avoiding subjunctives and the passive voice, and using the imperative tense more often). If there is a request for `modern technology' this could be put at the end of an article under the subtitle `Possible Future Developments' rather than frustratingly in the main body of the text, when one remembers that such technology may not be available in the present Millennium! Discussion 1 Asked if such a system of continuing medical education could be replicated elsewhere, Dr. Bewes replied that it could. In Uganda courses and demonstrations take place in the hospitals where doctors worked, using patients from that hospital. In Kenya the system is more centralized - doctors travel to various centres for further training. There is also evidence that such training has an impact on patient care. New techniques that had been demonstrated were put into practice and one hospital had been persuaded to boil their syringes before using them again. Although books and pamphlets are given to the hospitals as a part of the continuing medical education programme, only four out of 89 hospitals have a `librarian'. Speaker 2: Indira Benbow (Teaching Aids at Low Cost) Teaching-aids at Low Cost (TALC): Low cost teaching materials to help to save lives, reduce poverty and prevent suffering
TALC's 9 part-time and 2 full-time staff also send out thousands of teaching accessories to over 150 countries each year. Our small but efficient staff keeps overheads low and books at a fraction of the cost of most bookshops. Current TALC Partnerships
Future TALC Partnerships
Future Directions
Discussion 2 It was emphasized that TALC is not a publisher of material and the items they distribute are produced in many different countries. TALC aims to choose the best materials available, but might commission a publication if there is a need to be filled. Publishers are generally willing to co-operate in such projects. Speaker 3: Tony Obuaya (Nigerian Medical Forum) The Nigerian Medical Forum of UK & Ireland Introduction: Concern for the deteriorating plight of health services in Nigeria since the mid-1980s led to the inauguration of the NMF in September 1991 in London. One month later it was formally launched in the premises of the Nigeria High Commission, London. It took us 18 full months to convince the charity commission that our objectives were charitable enough! Membership: Full membership is available for Nigerian-born doctors, dentists, nurses and other health professionals. Associate membership for other non-Nigerians who share the NMF objectives. Membership policy is currently under review in the light of 9 years experience and success. Aims and objectives : 1) The relief of sickness in the broadest sense in Nigeria including the supply of those medical , dental and other health information, equipment and facilities that may otherwise not be provided by the government of the day. 2) The advancement of public education in medicine and health matters. Territory: Even though the epicentre is Nigeria, other target countries in the west Africa region have since been included. Nigeria's population is 108 million, which represents almost 95% of the West Africa. 1 in 4 black Africans is a Nigerian. If Nigeria gets it right, all others will follow in Africa. This is why we are greatly encouraged by the recently completed democratic elections. We have been able to support Nigeria at times of very harsh realities of deprivation and poor healthcare. Being a Nigerian since the 1980s felt like being in water and yet seeing water entering your eyes. We pray that democracy will provide for Nigerians the kind of quality healthcare they deserve. Achievements: 1) Survival of NMF to date in spite of virtually no sources of external financial help. The NMF runs its programmes largely from members' dues, levies and donations. All attempts so far to raise money from any funding body in UK has failed. As soon as you mention Nigeria , they all back off. Let us hope that with a democratically elected government in place our work will be supported. We will need and welcome any advice from all of you at this meeting today. It is a miracle that we are still doing charitable work especially as we are all unpaid volunteers busy at our various clinical posts. 2) Lecturer exchange programme: members volunteer to spend part of their leave to spend time with isolated rural doctors in Nigeria to help them put into practice the information and knowledge in the health information materials that we send them. This project ensures that the information is used to effect change for good at the front line where it really matters. Doctors in towns like Lagos have access to the world literature but these rural colleagues are cut off not only from their town folk in Nigeria but from the rest of the world. We are really proud of this project. We are supported in part of this project by the charity Tropical Health Education Trust (THET), run by Professor Eldred Parry. We acknowledge with great thanks their support. 3) The NMF in 1996 initiated the publication under contract of the British Medical Journal (West African Edition) in Lagos so that not only do the health workers receive old health information in the back issues we send to them, but also, with the local BMJ, they now receive current, latest information/techniques. The financial burden of this publication caused the NMF to hand over the publication to a dedicated publisher who guarantees to retain the objectives of the NMF even while running it as a viable business. To date that promise has been kept. 4) Advising Nigerian govt and health planners on modern health policy. The NMF organises lectures on health issues relevant to Nigeria / Africa and then compiles the lectures in booklet form for distribution in Nigeria free of charge, eg Accident care in Nigeria; Medical Training and Education in Nigeria; etc. Discussion 3 The change in regime in Nigeria has made co-operation with organizations in the UK much easier as the political climate improved. The logistics of moving material to Nigeria and around has bot been a major problem, since local contacts know how best to manage the system. The infrastructure, roads and communications, although run-down, are still operative. It was pointed out that individuals who wish to donate journals to libraries have to pay the full, institutional subscription price. Publishers might be persuaded to consider marketing such donations at the personal rate. The Nigerian Medical Forum has managed to negotiate a discount on the journals they subscribe to on behalf of the medical facilities they support. Speaker 4: Douglas Buchanan (British Council) BRAINSTORM SESSION: How can British Council offices in the least developed countries best be used to meet the information needs of healthcare workers? The British Council intends to focus its health work in Africa and South Asia on information provision for health professionals and development of popular health journalism to create a better informed public. Key points about the British Council
British Council strengths
British Council needs
Discussion 4: FORUM BRAINSTORM SESSION: How can British Council offices in the least developed countries be used to meet the information needs of healthcare workers? Suggestions centred around two related themes: 1 Improving access to reliable health information for local healthcare workers and others
2. Training initiatives; improving capacity in local publishing and librarianship; supporting distribution of local publications
Speaker 5: Michael Dobson (World Federation of Associations of Anaesthesiologists) Electronic publication in anaesthesia: an educational opportunity for developing countriesIntroductionThe possibility of electronic transmission of scientific, educational and other materials is seen by some as a revolution equivalent to the invention of the printing press. Others feel that this is at best an entertaining hobby for technophiles. Anaesthetic "literature" is already appearing in considerable quantity on electronic media; textbooks are available in CD-ROM format, scientific journals are beginning to require the submission of "manuscripts" on floppy disk, and there are Internet and web sites specialising in anaesthetic teaching and research materials. As with other computer technology, the only rational approach is to begin with the question "What do we want to do?" and then look at how the technology may be able to help, rather than to start with the technology-based question "What is possible?" (the answer to which is "almost everything") . "Know what you want" is a good maxim. It is not possible for most of us at present to imagine that electronic media will replace the printed word. A book is a portable, permanent, maintenance-free device which allows convenient access to large quantities of information and can be used for at least 12 hours at a time without an external power supply! Background "World Anaesthesia" (an International NGO working to assist the development of safe anaesthesia in Developing Countries) has for some years, and with the sponsorship of WFSA (World Federation of Societies of Anaesthesiologists), DfID and others, been producing an excellent educational journal - Update in Anaesthesia. This publication is aimed primarily at anaesthetists in developing countries, many of whom may not have regular contact with their colleagues, or even an up-to-date textbook. Update in Anaesthesia has been widely acclaimed by its recipients, who receive it free of cost. Its success owes much to the work of Iain Wilson as editor; the production is of good quality, and no advertising is carried - the aim is to produce a "build-up" reference text for readers. Each copy costs about £1 to produce - at first the print run was 1000 copies, but demand has been such that 13,000 copies of each edition (currently 2 each year) are sent out. Some copies are sent out in large batches to teaching centres or individuals who arrange onward distribution. Because Update has become a recognised teaching resource, we have had a number of requests for reprints of back issues, but our stocks of these were quickly exhausted. Re-printing large stocks would be expensive, and the number of reprints needed would be a guess - guessing wrong could prove expensive. Since Update has always been produced and edited electronically, the possibility arose of distributing "electronic" reprints. Achievements to date: With the technical assistance of computer specialists in Oxford we have now completed the task of transferring almost all paper editions of "Update" into electronic form - we can supply these free on floppy disk or CD ROM (together with the free software needed to read, search and print them), and they are available on the web at http://www.nda.ox.ac.uk/wfsa/ They can be accessed by any computer running DOS or windows. Software exists (Adobe Acrobat) which allows us to send not only the material we wish to transmit by electronic means, but also the means to read and print it. This means that the end user does not need to have a specified standard word processing package, and can access "Update" in full or in part for viewing or printing. Readers cannot alter the material, so authors can be assured that a local "expert" will not change their advice! It has been gratifying to discover that other groups, including WHO publications and Oxford University Press, have chosen to use the same means of electronic publication as we have done. Most teaching libraries and central anaesthetic departments now also have access to a computer. A department which has back issues of "Update" stored electronically is in a position to provide an entire region or even country with reprints, in journal form, or individually as lecture or teaching notes. Among the difficulties of electronic publication are problems with copyright - but there are many anaesthetists who already have (or are willing to produce) good quality teaching materials free of charge and without copyright restrictions. Printed sources can also be used via a scanner and OCR (optical character recognition) software. We are have contacted editors of leading anaesthetic journals, requesting their permission to reproduce review articles from their journals – using reviews more than 2 years old will not affect their sales, but could be a priceless resource to those without access to a good library. So far we have received permission from almost every editor approached, and are in the process of setting up a "text only" version of these articles. They are compact and easy to transmit by email, and will form the basis of an electronic reference library in suitably attached teaching centres. The British Council have also agreed to stock our materials - both "Update" and reviews, in their network of worldwide libraries. Our ultimate aim includes an electronic reference library at a fraction of the cost of a paper one. A considerable amount of teaching material in anaesthesia is available now on the internet - although much of it is inappropriate for developing countries. Internet could be used as a means for editors to collect appropriate teaching materials. We have appointed an "electronic Editor" whose role includes searching the Internet for suitable teaching materials. We have already tested the transmission of teaching materials on floppy disk, CD ROM and over the internet to centres in Tanzania, Uganda and India - in each centre our recipients, with no previous experience of our software, were able to download and access the materials, with which they were delighted. In the 18 months since it was set up, our Update site has increased its visitor rate from 100 to 1200 hits/month. Those without www access can receive identical materials including "Acrobat" reader software on CD ROM or floppy disk through the post by registering on the form below. We felt it would be a mistake to offer the materials at no cost, so a modest charge ($5) is made, but this is in the form of a donation to the national society of anaesthesia, so money does not have to cross frontiers, and the local society of anaesthesia gets the benefit ( and may therefore be inclined to promote our materials!) "Update in Anaesthesia" can be seen at the following URL: . For information on how to receive Update in Anaesthesia in various formats, please send an email to . Discussion 5 As many places in the world have e-mail only facilities rather than full Internet access. Analysis of the facilities available in Zimbabwe (a relatively advanced country) have shown that e-mail facilities were widely available. Update in Anaesthesia is looking into making electronic access to the publication more widely available. The spread of the Internet in Africa is the subject of an article in Nature (London), 7th January1999, p.10-11. It was suggested that Forum participants might ask their contacts if their anaesthetists had access to Update in Anaesthesia so that the publication might be more widely known. Speaker 6: Barbara Kirsop (Electronic Publishing Trust) ELECTRONIC PUBLISHING TRUST FOR DEVELOPMENT: Closing the knowledge gapsThe Electronic Publishing Trust for Development (EPT) was established just over 2 years ago to support the distribution to developing countries of scientific research through electronic publishing. The EPT identified two gaps: 1. The North to South gap is caused by the continuing increase in the cost of scientific journals so that libraries and the scientific community can no longer afford them. Can electronic publishing help? The model adopted by most commercial publishers has not led to a reduction in subscription charges so that the cost barrier remains. Fortunately, the seriousness of this situation to science is increasingly recognised by scientific publishers and librarians and a number of 'alternative low cost mechanisms' are being supported and developed (notably by the Association of Research Libraries SPARC programme and the Los Alamos E-print Archives). Although these will take time to filter through, the future of science publishing seems to be moving towards a more equitable distribution system. 2. The South to North gap has been brought about by the rising costs of printing and distribution faced by science publishers in developing countries. The outcome is smaller print runs, fewer submissions, a feeling of isolation by the local science community (who also find it difficult to publish in journals from the West) and a general downward trend. Moreover, essential research generated in developing countries is 'lost' to science - particularly critical in such areas as tropical diseases, infectious diseases, epidemiology, emerging new diseases as well as in conservation and the environmental sciences, where a global picture is required. Can electronic publishing help? Fortunately, the technology for electronic publishing is low cost, readily transferred and, most importantly, does not require full Internet connectivity since it only requires the conversion of material into Web-compatible format and collaboration with a partner Web site for distribution. Additionally, the global distribution that electronic publishing provides means that much previously 'invisible' research becomes part of the international public domain. As authors recognise that their research can be distributed at a hugely increased level, they are more willing to submit papers, partnerships can be forged, the trend is reversed into an upward direction. With global visibility comes a need for high standards, so that e-publishing inevitably leads to better quality publications. The EPT has obtained small grants from the Southern African Book Development Education Trust, a contribution from INASP and provision of a distribution and management mechanism from Bioline Publications. With this support and the collaboration of the publishing partners in the developing regions, the full text and graphics of some 15 peer-reviewed journals are now online. The training has taken place informally on a one-to-one basis and by e-mail so that in less than a year the publishers are able to convert from print to electronic format, absorbing the costs in-house (apart from the small start-up grants provided) and are independent for the future. Web statistics show a steady increase in interest by the Internet community as the body of material online grows. The EPT feels these pilot studies have been successful, and is now looking for partners and start-up funds to extend the process, since there are numerous high quality journals enthusiastic to learn the technology. Some commentators have felt that electronic publishing offers few advantages, since many regions have very limited ITC infrastructure. However, it seems retrograde to deny the opportunity to those 'pockets' that are able to benefit: by awareness-raising and training, scientific publishers and the scientific community can be prepared to take advantage of the new technology when opportunities arise. A staging-post strategy can offer support for regions currently without computer facilities. Further, as shown in Nature recently (see below), investment in the infrastructure is being given priority and the situation is changing rapidly. Indeed, countries currently receiving this investment are also benefiting from the latest digital systems. Web sites: Electronic Publishing Trust for Development www.epublishingtrust.org Bioline Publications: http://www.bdt.org.br/bioline/ Comprehensive e-publishing site: http://citd.scar.utoronto.ca/Epub/1997.html References: 'The writing is on the web for science publishing in print', Nature, January 21st 1999, pp195-200 'The Internet can help close the gap', Nature January 7th 1999, pp 10/11 EPT Letter to Nature, Nature 1999 January 21st, p201 Medical journals from developing countries now online include: African Journal of Neurological Sciences, Kenya Central African Journal of Medicine, Zimbabwe East African Medical Journal, Kenya Memorias do Instituto Oswaldo Cruz, Brazil. Several other on-line biomedical journals are available through EPT. The meeting proceeded directly to Speaker 7. Speaker 7: Andrew Herxheimer (Cochrane, DIPEX database) DIPEX : a database of individual patient experiences The aims of DIPEX are:
The DIPEX project will combine a systematic analysis of people's experience of illness with evidence of the effectiveness of treatments, information about support groups and other resource materials. The proposed database, which will be available as an Internet site and CD ROM, will be unique in the field of patient and healthcare communication. Background
Progress to date A pre-pilot study was developed with a grant from Consumers' Association. This showed that GPs and hospital consultants found it difficult to remember to recruit patients, and that the initial questionnaire produced `satisfaction' accounts rather than `experience' accounts. A grant of £7,000 from Oxford and Anglia NHS R&D enabled us to develop methods and produce a demonstration CD ROM. This includes a short film about the project, audio and video clips from interviews, and links to other databases and information sources. An illness narrative approach has been identified as the most appropriate methodology for collecting accounts which emphasise the respondent's own concerns, meanings and priorities. Pilot audio and video recorded semi-structured interviews have been conducted with people who have recently experienced illness. We now have funding from the NHS to develop a section on hypertension and evaluate its use in teaching medical and nursing students, and from the NHS Screening Programme for a section on cervical screening. We are in touch with voluntary and patient support groups and with researchers who are collaborating on pilot data collection projects, including one on patients with Alzheimer's disease and their carers. We have applied for further funds, including a core programme grant. The DIPEX team consists of Andrew Herxheimer, Ann McPherson, Rachel Miller, Sue Ziebland, Sasha Shepperd, John Yaffe and Pamela Baker. It is based in the Division of Public Health and Primary Health Care at the University of Oxford. For more information: DIPEX c/o Pamela Baker, GPRG, Institute of Health Sciences, Oxford OX3 7LF, E-mail <pamela.baker @ dphpc.ox.ac.uk>; Phone +44 (0)1865 227062; Fax +44 (0) 1865 227137 Discussion 7 Priorities in this research were influenced by demand. Thus if a particular consumer group was keen to co-operate, attention would be focused on that disease. It was pointed out that some relevant data on the patient's view of an illness are available in Where there is no Doctor. Speaker 8: Fiona Godlee (BMJ Publishing Group, Clinical Evidence) Clinical Evidence is a new compendium of evidence being produced jointly by the BMJ Publishing Group and the American College of Physicians. It summarises the best available evidence for clinicians on a range of common clinical interventions. It does not make recommendations and makes explicit the gaps in the evidence. The first issue will be available in June and it will be updated and expanded, both on paper and electronically, every six months. Fiona Godlee, editor of Clinical Evidence, led a session to consider ways of adapting and tailoring the content for an audience in the developing world. Participants stressed the need to search the third world literature to ensure the widest possible generaliseability for the summaries of evidence, and the need to canvass views from practising clinicians in developing countries on what questions are important to them. Existing networks set up by members of INASP will help to make this sort of work possible. Discussion 8: FORUM BRAINSTORM SESSION. How can Clinical Evidence be adapted for, and made available to, healthcare workers in developing countries? Suggestions related to ease of use, relevance, and accessibility: Ease of use
Relevance
Accessibility
END Workshop 6 will take place at the BMA on 18th May 1999, 4 – 6 pm. This will be the last workshop in the current series and the objective of the meeting will be to shape the future direction and activities of the Health Information Forum for 1999-2000 and beyond. Please contact Neil Pakenham-Walsh () if you would like to participate. |
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