Global Review of Access to Health Information in Developing Countries

Guidelines for contributing organizations (draft v5.0)

Purpose

There is increasing concern that healthcare providers in developing countries continue to lack access to the basic healthcare information they need to learn, to diagnose, and to save lives.

A group of leading health organizations is organizing a Global Review of what has been achieved in health information access and provision, what works and what doesn’t, and why. The Review will engage the many thousands of organizations and individuals worldwide who are working to improve access to locally relevant, evidence-based materials for healthcare providers in developing and transitional countries.

Outputs

1. Global Report: A synthesis of progress, lessons learned and ways forward for the future to improve access to essential information for healthcare providers in developing and transitional countries

2. A more inclusive and dynamic ‘community of interest’ of stakeholders in health information, globally and at country level. This will help to increase opportunities to learn, to share experiences, and to identify and express priorities.

3. An increase in the level of financial and other support for current and new health information activities worldwide, internationally and (especially) at country level.

Background

The need for a Global Review has emerged against the following background:

1. Increasing number and diversity of initiatives to improve access to health information.

2. Apparent lack of impact of these initiatives on the majority of healthcare providers.

3. Lack of understanding about what works and what doesn't.

4. Increasing recognition of the importance of health information access in healthcare, and in meeting the Millennium Development Goals.

5. Increasing difficulty for many successful health information initiatives to find financial support.

6. A Discussion Paper commissioned by WHO, a shortened version of which was published in The Lancet on 18 July 2004.

Scope

The Review will focus on 'improving access to essential healthcare information for healthcare providers in developing and transitional countries'.

The concept of 'essential healthcare information' will be explored as part of the Review. We use the term here to mean 'the basic healthcare information that a healthcare provider needs to help him or her to deliver the best possible healthcare with the available resources'. What is 'essential' is in the eye of the healthcare provider - it will vary from one individual to another.

Global Report

The Global Report will consist of a number of components. Each participating organization will take responsibility for drafting one or more components, according to their area(s) of expertise and interest.

Working title (to be agreed): “Towards universal access to essential healthcare information by 2015: a consultative review of progress, lessons learned, and ways forward”

Section 1. Introduction

1.1 Executive summary

1.2 Preface

1.3 Introduction/background

• Purpose

• Expected outputs

• Methodology

Section 2: Access to health information: a systems approach

2.1       Identifying information needs

2.2       Undertaking relevant primary research

2.3       Making primary research available:

a. Publishing of primary research

b. Indexing of primary research

2.4       Synthesizing research: The role of systematic reviews

2.5       Producing generic evidence-based materials (EBMs)

2.6       Producing locally relevant reliable materials (LRRMs)

a. Integrating local and generic content

b. Making content easy to use: language, culture, understandability

2.7       Making LRRMs available:

a. Increasing physical access to electronic LRRMs

b. Increasing physical access to non-electronic LRRMs

c. Helping people find relevant, reliable information

Section 3: Cross-cutting issues

3.1       Information and communication technologies (General overview, complementing specific issues described in section 2)

3.2       Information skills development (General overview, complementing specific issues described in section)

3.3       Cooperation

3.4       Political and financial commitment

Section 4: Regional issues

4.1.      Africa

4.2.      Eastern Mediterranean

4.3.      Latin America and Caribbean

4.4.      South East Asia

4.5.      Western Pacific

4.6.      Newly Independent States

Section 5: Subject-specific issues 

5.1       Access to healthcare information on reproductive health

5.2       Access to healthcare information on HIV/AIDS

5.3       Access to healthcare information on rational use of drugs   

Structure of each component

For consistency, each component will use a similar basic structure. Throughout, it might be useful to illustrate each component with pictures and diagrams wherever possible, as well as real-life stories and case studies.

1. Title
2. Objectives
3. Introduction
4. Findings
5. Conclusions
6. Appendix

1. Title

The above structure gives titles for each component.

2. Objectives

This could be a single sentence, eg The objective of [this component] is to collate a diverse range of perspectives on progress, lessons learned and ways forward to increase access to health information in developing countries, with a particular focus on [professional/geographic area]

3. Introduction

(a) Definitions/scope

Define the area. Why is it important? What tasks are involved (Section 2)?

(b) Methodology (see below)

4. Findings

Include, where appropriate:

• key references
• key priorities as described by contributors (see below)
• brief case studies

(a) Progress

How has this area (professional or geographic) changed in the last 10 years, for better, for worse? What kind of activities have been happening in this area over the past 10 years? What impact have they had? Who are the major players and who has funded these activities? What are the main trends?

For components in Section 2, it would be useful to have a peer analysis of the systems diagram, and for the individual component process. What are the perceived inputs, outputs, drivers and constraints? How can the system be improved?

(b) Lessons learned

What has worked well? What has worked not so well?  Has anything unexpected happened? How well are we measuring the impact of our activities in this area?  What are the constraints and enabling factors?

(c) Ways forward

How might this area evolve over the next 10 years? What needs to be done in this area to help meet the overall objective of ‘universal access to health information by 2015’? What existing activities must be prioritised for continued support? What new plans or ideas are there emerging, now and in the future? Are there any examples of visionary or ‘blue sky’ thinking in this area?

5. Conclusions

Summarize key points. Call for action (if appropriate). Where do we go from here?

6. Discussion Opener

The discussion opener for each component might consist of a combination of the following three elements:

• Three or four short paragraphs that provide an overview of your component, including reference to Lancet discussion paper and systems diagram
• Brief personal commentary (optional)
• Brief questions to stimulate dialogue

Methodology

The review will use a combination of existing face-to-face meetings and email conferencing to draw on past experience and current perspectives as a basis for current and future action. It will be comprehensive and inclusive, using discussion, feedback and ideas from providers and users of information worldwide.

The following approach is proposed for each steering group member:

1. Mobilize your organization and conference organizer to commit to making an intellectual contribution to the review, and to include discussion time at your conference/meeting
2. Identify key papers (formal and informal literature) that are specifically related to your component
3. 6 weeks before your conference/meeting, send a brief discussion opener (see below) by email to HIF-net at WHO plus other email lists, as appropriate (this discussion opener may also be submitted to other outlets, eg appropriate journal or journals)
4. Facilitate email discussion and collate feedback
5. Give presentation at your conference/meeting, based on 1,2,3, and 4
6. Facilitate face-to-face discussion at your conference/meeting
7. Prepare and distribute draft component for informal open peer review
8. Finalize and publish Component, and integrate with Global Report.

The Global Report will need to be completed by end-July 2004 and will be presented to the International Congress of Medical Librarians in Salvador, Brazil, September 2005, and to the Cochrane Colloquium, Melbourne Australia, October 2005.

Related areas

Access to relevant information is a prerequisite for the delivery of effective healthcare, but there are many others that are closely related, for example:

From access to application. Even if a healthcare provider has access to relevant information, there are many further barriers between access to such information and the successful delivery of healthcare. Some of these are outlined briefly by Paul Glasziou, see - www.ubht.nhs.uk/ evidence-in-practice/EiP2/speakers/06-3.htm 

Access to information for researchers and policy makers, especially as they relate to the role of researchers and policy makers.

Health education, especially the information needs of health educators, who are very often also healthcare providers.

The Global Review will not be able to address the above areas per se, but seeks to make linkages with key individuals and organizations who are involved in these areas.

Overall review: Publication strategy

The Lancet have asked us to propose a Publication Strategy. The current WHO position paper by Godlee et al as a starting point for the review. This paper was published in a short form in The Lancet, on 18 July 2004. An updated Lancet paper will be published in late 2005, as an end-point to the Review, and illustrating the learning that has taken place during the intervening period. In the meantime, we would be keen to publish components/outputs of the Review in the Lancet and BMJ. We are also keen to have articles about the Review in other medical journals and newsletters, especially those published in developing countries.

Linking the review to action

This is going to depend on grasping opportunities that emerge as the review progresses. The first opportunity to emerge is the potential for a WHO ‘special initiative on access to health information by 2015’, as recommended in the WHO position paper by Fiona Godlee et al. The paper recommends WHO set up an ‘international collaborative group’, which would lead the way for increased political and financial commitment and ‘practical action’. If this happens, the review process would serve as an important sounding board and ‘stakeholders monitor’ for such action, with the purpose of the ‘community of interest’ helping identify not only on ‘doing the right thing’ but also (just as important) ‘doing the right thing right’ (eg engaging people in the development of ideas and ownership)

Dynamic and evolving

We plan for all components to be made available online as ‘living reviews’ - constantly updated online (beyond 2005) in response to new data, ideas and information emerging from face-to-face meetings, email forums, the general literature, our day-to-day work and experiences. Further discussion is needed to identify how this might best be achieved.

People who are involved in the Global Review

These include:

1. Steering group

Each member takes responsibility for ensuring that their Component is completed, using the above methodology where possible, and engaging 'expert advisers' and 'contributors'.

2. Expert advisers

The Global Review will require specific expert input, both at an individual component level, and at the overall level.

At the individual component level, members of the steering group are encouraged to identify 3-6 people who will be willing to help them with their task.

At the overall level, Michel Menou has kindly agreed to provide advice on evaluation & monitoring. We are also seeking input from other fields, eg anthropology, and from related areas (see above).

3. Contributors

Contributors include all people who provide input into the content of the Review, whether by email, conferences, formal or informal literature, or by other means.