International Network for the Availability of Scientific Publications
PO Box 516, Oxford OX1 1WG, UK
Tel: +44 1865 249909 Fax: +44 1865 251060
E-mail: [email protected]

Health Information Forum: Working together to improve access to reliable information for healthcare workers in developing and transitional countries

Workshop 6: Shaping the future direction and activities of the Health Information Forum: 1999-2000 and beyond

Venue: British Medical Association, Tavistock Square, London, WC1H 9JR
Date: Tuesday 18 May 1999

Contact: Dr Neil Pakenham-Walsh Telephone: 01865 249909 E-mail: [email protected]

Chair: Richard Smith (Editor, British Medical Journal)

Speaker: Sue Lucas (Coordinator, UK NGO AIDS Consortium)

Other participants (incomplete):

• Paul Chinnock (rapporteur) Africa Health and Medicine Digest, FSG MediMedia
• Christopher Zielinski ExtraMED
• Liz Woolley (summary rapporteur) CAB International
• Florence Harding (facilitator) Commonwealth Secretariat
• David Curtis Healthlink Worldwide
• Bill Posnett (facilitator) Healthlink Worldwide
• Carol Priestley INASP (International Network for the Availability of Scientific Publications)
• Neil Pakenham-Walsh INASP-Health
• Colin McDougall Independent
• Jane Cole Independent
• Frank Norman (rapporteur) National Institute for Medical Research
• Anna Tomlinson Royal College of Physicians (London)
• Resoum Kidane Sheffield University
• Prof Subbiah Arunachalam M S Swaminathan Research Foundation
• Gerry Dingley (rapporteur) Teaching-Aids at Low Cost (TALC)
• Frankie Bishopp Towards Education for all with Multimedia (TEAM)
• Christopher Coyer (facilitator) Tropical Medicine Resource, Wellcome Trust
• Gerard Robinson World Federation of Societies of Anaesthesiologists
• Patricia Butler World Health Organization
• Lucilda Hunter Formerly, WHO Africa Regional Office/AHILA

Introduction

Dr Richard Smith explained that the main purpose of the workshop was to briefly review the first year of the Health Information Forum, and to discuss where it should go over the next 12 month and three year periods.

He went on to describe the format for the workshop. Following the presentation by the guest speaker, participants would divide into three working groups of ten people to discuss the same topics, and then reconvene in a plenary session to present the outcomes of these. A synthesis of these would be drawn up for discussion by participants.

He then introduced the guest speaker, Sue Lucas, Co-ordinator of the UK NGO AIDS Consortium, who had been asked to consider similarities and differences between the Consortium and the Forum.

Presentation by Sue Lucas, Co-ordinator, UK NGO AIDS Consortium

Sue Lucas said that the aim of the Consortium was to promote understanding and awareness of HIV/AIDS and responses to HIV/AIDS in the context of development. It brings together a group of NGOs based in the UK whose work relates to development and to developing countries.

She recalled that the UK NGO AIDS Consortium was started at the initiative of Oxfam in 1986 in response to a new threat to development, HIV/AIDS, which was not being acknowledged by governments. At that time, although NGOs were starting to respond, the way forward was not very clear. By meeting together, NGOs were able to share information and experiences, keep up to date with the impact of the epidemic, convince others about the importance of the disease, and ensure that approaches of the different agencies were not counter productive.

Principles

The main principles of the Consortium are that it should be:

• inclusive

The Consortium does not turn people away if they wish to join. However it is able to expel people, which has never yet been done. The Consortium was set up as a company limited by guarantee in 1991.

• non-directive

Representatives of member organisations attend the regular quarterly meetings of their own free will. Although member organisations may have differing philosophies, they are able to come together at the Consortium meetings to discuss pertinent issues.

• not in competition with members

The Consortium does not undertake any activities that are already being undertaken by any of its members, it only carries out projects that are better done as a group. The organisation is owned by its members and is directed by them. At present, there are over 50 full members and associate members. Government agencies attend meetings as observers.

Structure

Decision-making

The Steering Committee is elected each year from the membership. Working Groups are formed to address key issues and recommend action. Four or 5 groups usually exist at any one time with varying lifetimes. This year the Advocacy Forum was set up to recommend issues and activities.

The Secretariat, comprising 2 staff, services the Steering Committee and liaises with members and external agencies.

Funding

Core funding is provided from membership contributions. Project proposals are drawn up for activities managed by Working Groups and funded by donor agencies.

Accountability

Accountability of those involved is as follows:

• Steering Committee to members (also legal responsibility as directors under company law).
• Secretariat to members and to the Steering Committee
• Individual representatives to their member agencies

Similarities with the Health Information Forum

Health Information Forum and the Consortium have similar aims and objectives as regards information exchange, improving understanding and knowledge, and advocacy, although clearly the specific goals differ. Both organisations also have similar constituencies and focus on developing countries.

Differences with the Health Information Forum

A major difference between the two organisations relates to funding. The Forum receives external funding, while the Consortium is funded by its members.

Within the Consortium, the approaches to development can be very different among its members. Whereas Sue Lucas thought that Forum participants were more likely to have similar approaches.

Both the Forum and the Consortium have an advocacy role directed to external agencies. However, unlike the Forum, the Consortium also has an advocacy role directed at its member agencies.

Challenges

Challenges faced by the Consortium include the following:

1. Avoiding competition with member agencies by:

• making a careful selection of what can be done successfully
• limiting activities to those which need or benefit from a joint approach
• ensuring that the interests of any one agency do not upset the balance

2. Ownership issues

• The secretariat is neutral and ensures that each working group/committee takes ownership

3. Including smaller/less active agencies

4. Internal communication of member agencies can block progress

5. Time and commitment of member agencies.

• Many people are finding they have less time to get involved with working groups.

Successes

Successes of the Consortium are as follows:

• funding continues, organisation is still going!
• international recognition
• its advocacy role
• generally at the cutting edge in the issues raised because of
• the breadth of information from members
• some member agencies have taken on issues of HIV as a result of their participation in Consortium activities
• individual projects, e.g. seminars and publications, have been successful
• interaction between members

Discussion

In response to a question on the input that groups in the South had made to the work of the Consortium, Sue Lucas replied that many organisations in the South, especially those working in the field, had made useful contributions to projects. However she reminded participants that the Consortium had been set up primarily to serve UK development agencies.

Sue was asked if the organisation was more effective as a result of being a company limited by guarantee. In response, she said that the Consortium needed legal accountability and a legal structure in order to receive grants. It had decided from the start not to become a charity because it could not have undertaken any campaigning.

Sue explained that the Consortium had organisational membership, i.e. organisations sent representatives to attend the meetings. Individual members were also included to contribute their expertise. In comparison, the Forum does not have a formal membership.

One participant asked what activities the Consortium carried out which were not in competition with those of its members. In response, Sue gave as examples, the production of HIV/AIDS and Overseas Employment, A Guide for Employers, and the organisation of seminars.

Feedback on Forum activities

Neil Pakenham-Walsh, Coordinator, Health Information Forum (and Programme Manager, INASP-Health), reported that the past year had been successful with effective contact and collaboration among participants. Six workshops had been held on various topics which had provoked useful discussions. A questionnaire on the activities of the Forum had been sent to 120 participants, and 16 replies had been received. Interim results of the questionnaire had been sent to all participants.

Comments included (among others):

• usefulness of the Forum for making contacts and collaborations
• usefulness of finding out what others are doing to avoid duplication and facilitate co-operation
• usefulness for increasing personal knowledge of health information issues
• usefulness of participant profiles and possibility of including contact details and partnership requests
• making the INASP Health Directory more accessible
• possibility of running an e-mail discussion group
• increasing participation from colleagues in the South
• themes suggested for future meetings include facilitating contact and sharing of skills and experience; promoting analysis; undertaking advocacy
• setting up action groups
• increased cooperation with WHO (meeting with WHO staff still to be arranged)
• increased cooperation with DFID/HPD (waiting to hear DFID's response to the UK Health Communication Partnership study)

Neil thanked members of the Organising Group including Fred Bukachi (HealthNet Kenya); Andrew Chetley (Healthlink Worldwide); Paul Chinnock (Africa Health and Medicine Digest); Manjit Kaur (ECHO International); Jean Shaw (Partnerships in Health Information); Phillippa Saunders (Essential Drugs Project); Anna Tomlinson (Royal College of Physicians). He went on to thank Richard Smith, Carol Priestley and others for their central roles in the development of the INASP-Health programme and the Health Information Forum; and Gaby Shockley who had organized the venue for all Forum workshops at the BMA.

Synthesis of Working group presentations

Liz Woolley provided a synthesis of the presentations of the three working groups as follows:

Objectives ( 3-year vision)

• be recognised as an international forum for information provision and have an international profile/identity
• expand to include more people, particularly from the South
• consider a defined structure in order to strengthen its credibility, impact and ability to negotiate
• continue to share experiences and network
• keep a diversity of participants
• remain under the INASP banner
• be more focused with clearly defined and measurable objectives.

Actions

• identify contacts in the South, especially other networks
• set up a mechanism for continuous feedback of information from the South
• provide support to health information providers but not become a provider of information
• act as a clearing house for information
• set up action groups on priority subject areas
• share research information between participants
• carry out research
• market the Forum e.g. through presentations about HIF at meetings, distributing promotional leaflets/newsletters, setting up a website, etc.

Measurable outcomes

The Forum should develop measurable outcomes. This would help to secure funds from the BMA and other sponsors. Measurable outcomes suggested include:

• support for `action groups' with a particular focus and measurable objectives:

`Staging posts' (exploration of various models of improving access through internet-print chain)

HIF-WHO cooperation

pharmaceutical information

• production and distribution of publications, e.g. annual reports, newsletters, directories
• record of successes, e.g. funded projects, Southern participation, etc.
• exchange of information (if it can be measured)
• setting up of parallel forums in other regions, e.g. Africa, with whom we can work
• Themes for future meetings
• Drug information
• Staging posts
• Advocacy - how can the Forum link with WHO?
• Evaluation of health information provision activities
• Fundraising

Discussion

Professor Subbiah Arunachalam, said that it was important for the Forum to know the needs of developing countries through links with a network of people working in the field. He felt that it was important to strengthen knowledge and skills. Information could be disseminated at low cost so funding was not such a major problem. He considered that healthcare delivery provided by international organisations was not cost-effective.

While most participants agreed with the recommendations for the 3-year vision, opinions were divided about the structure of the Forum. It was agreed that the Organizing Group should consider this and report back. It was suggested that the Organising Group might also consider the question of marketing the Forum.

Concern was expressed at the overlap of interests of INASP-Health and the Forum. It was agreed that the Forum should not duplicate any activities already being undertaken by INASP or anyone else, but should focus on action better undertaken by participants as a group.

Closing Session

Richard Smith thanked Neil Pakenham-Walsh for all the work he had done for the Forum over the past year and declared the workshop closed.