Diabetes Action Now. Consultation on a new WHO-IDF programme

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1 World Health Organization Consultation on a new WHO-IDF programme A call for your views This document announces a new World Health Organization International Diabetes Federation (WHO-IDF) programme,. The programme is supported by a World Diabetes Foundation grant to IDF and by WHO funds. We are sending this announcement to a broad range of potentially interested organizations and individuals to seek their views on, and their contribution to, this major new initiative. Please share this document widely. The document is available on the web site along with a one-page summary and a powerpoint presentation. Details about how to submit your views are given later in this document. The deadline for responding is 31 January Rationale for the Programme It is estimated that globally there are 177 million people with diabetes and that this number will more than double by Diabetes used to be thought of as a disease of rich countries, but in fact most people with diabetes live in either very poor or relatively poor circumstances. Thus the majority of people with diabetes live in developing rather than developed countries, and the vast majority of the increase in diabetes prevalence in the next two decades will take place in developing countries. Within developed countries the prevalence of diabetes is higher in the less well off sections of the population. It is the experience of many people working in the field of diabetes that awareness amongst the public, policy makers and even many health professionals about diabetes is poor, although there is little hard data to back up this perception. It seems that key groups lack accurate information about the size of the problem associated with diabetes, the nature of the disease and the fact that effective treatment and prevention is possible. On specific topics, such as the economic impact of diabetes, there are some data from developed countries but virtually no data from developing countries. Convincing evidence exists on effective approaches to the prevention of diabetes related complications and to the prevention of type 2 diabetes. Yet there remains much work to be done in determining how to implement this evidence, particularly in settings where other major diseases compete for scarce resources. These are the challenges that addresses. Page 1

2 Overall Programme Goals The main focus of this programme is on low- and middle-income communities, particularly in developing countries. The overall goal is to stimulate and support the adoption of effective measures for the surveillance, prevention and control of diabetes. A key aim of the programme is to achieve a substantial increase in global awareness about diabetes and its complications. Timeframe The initial funding is for three years, but the strong expectation is that additional funds will be found to maintain the programme in the longer term. Certainly, meeting the goal requires a vision that extends well beyond three years. A high profile programme launch will take place by May The consultation Before the programme launch in 2004 a period of consultation and information gathering is taking place, the deadline for which is 31 January Input is invited from all interested parties, including WHO and IDF regional and country offices, governments, national diabetes associations, WHO Collaborating Centres, individuals with diabetes and their families, health care providers and members of the public. Details of where and how to send written feedback are given at the end of this document. We would also be happy to arrange to meet with people in Geneva, Switzerland, or to speak by telephone. We will summarize the feedback we receive and how we have responded to it, and publish this on our web site in February In the published summary we will keep your comments anonymous if you ask us to do so, although we ask that you identify yourself or your organization when sending comments. The consultation involves... A request for feedback... Please give your critical comments on the planned programme of work. Your ideas about how best to frame and undertake the activities in order to achieve the programme goals are welcomed. A request for information. Do you know of any relevant work that has been undertaken, or is planned or ongoing? Information is needed about who is involved, what they are doing, the goals and activities and, if available, the results. A request for help in achieving the goals. Can you identify activities to which you or your group could make a specific contribution? Some of the programme activities will have a global profile. Others will be based in around 4 or 5 different countries in different regions of the world. We invite suggestions for criteria that should be applied when choosing sentinel sites and your ideas about specific countries or areas that would make appropriate sites. Some more specific questions and suggestions to guide your feedback are listed in the table below. Page 2

3 Proposed programme outputs over the first three years Five major outputs are expected over the first three years of the programme. 1. A major increase in awareness about diabetes and its complications, particularly in low- and middle-income communities. 2. New knowledge from low- and middle-income communities on the awareness of diabetes and its complications, the economic impact of diabetes and the organization and quality of services for its prevention and control. 3. A widely disseminated published review of the evidence and rationale for the prevention of diabetes and guidelines for implementing prevention activities. 4. The provision of tools to assist with improving the quality and coverage of prevention and health care for people with diabetes in low- and middle-income settings. These will include: 4.1. The definition of a minimum acceptable package for diabetes prevention and health care in low- and middle-income communities; 4.2. A set of tools to assist with the implementation of the minimum package; 4.3. A set of tools to be used to monitor the quality and coverage of diabetes prevention and care. 5. An increase in the number of countries with national diabetes programmes delivering the minimum acceptable levels of care and prevention as defined in output 4. Proposed activities in order to deliver the outputs The left-hand column of the following section summarizes the main activities that we currently envisage being undertaken to meet each of the outputs described above. The right hand column provides clarification where needed, but also asks questions to which we would very much appreciate your response. Page 3

4 Proposed activities Activities relevant to all outputs The identification of important stakeholders. Communication with stakeholders using a variety of media (letters, flyers, consultation documents, Web, phone conversations, face-to-face meetings). Enlisting the support and active co-operation of stakeholders. Ongoing communication and regular feedback on outcomes. Activities for output 1 a major increase in awareness Comments, questions and requests for information We ve attempted to identify key stakeholders, but would welcome suggestions of groups who you think should be consulted and involved in the programme. Clearly identify target audiences and messages. We would welcome your thoughts on this, and on the relative priorities of reaching different audiences e.g. lay public, ministries of health, politicians, people with diabetes, health care professionals, lay carers, traditional medical healers and so on. High profile public launch. This is planned for May Development of materials to support launch e.g. web site, booklet, leaflet. Dissemination of above materials. We plan that much of the dissemination will be through and the internet. Your thoughts on the need for hard copy materials would be appreciated. Aim for World Health Assembly resolution on diabetes 2004/2005 Link in with work of IDF public awareness group It is anticipated that much of the awareness raising of this group will be in collaboration with the IDF public awareness group, and make use of their publication Global strategic plan to raise awareness of diabetes". Regional workshops for health professionals, policy makers, and representatives of national diabetes associations. Topics to include skills for rapid assessment of quality of health care, contents of national diabetes programmes, lobbying and media skills. Consider and work up other activities that will reach target audiences, e.g media campaigns, use of popular culture including TV and radio series. A workshop was held in May 2003 in Zanzibar for health professionals from 12 African countries. At least one additional workshop is planned, probably within South East Asia area of WHO. We are looking for opportunities to develop and evaluate innovative approaches to awareness raising within specific countries. Current examples of relevant activities, thoughts on where and how to do this, all gratefully received. Page 4

5 Proposed activities Activities for output 2 New knowledge In depth review of published and grey literature, and on work in progress, on awareness, economic impact, and quality and coverage of diabetes health care in low income settings. Identify sentinel sites for assessment of awareness, before and after awareness raising activities. Prioritize, plan and implement new work. (Likely to involve implementation of standard study protocols by willing collaborators). Activities for output 3 Document on the prevention of diabetes Review of literature prior to expert group meeting in December Consider need for a supplementary technical review and guidance more focused on the situation in low- and middle-income communities, particularly developing countries. Plan dissemination of review(s). Activities for output 4 tools for change Review all relevant IDF and WHO guidance on the management and treatment of diabetes and related conditions (such as cardiovascular diseases) in low- and middle-income settings. Include as appropriate aspects of the results of the review of the prevention of diabetes (for output 3). Define minimum criteria for the provision of diabetes care and its prevention, and seek feedback Comments, questions and requests for information We are particularly keen to find work that has been done in these areas but is not available in the published literature. Please put us in touch with any thing you know about. As also described later in this document, we anticipate that a very important part of the programme will take place in a small number of demonstration sites. Based on the review of current work completed and in progress, new work, as needed, will be planned. Details of this will announced at the official programme launch in The last WHO diabetes prevention review was published in This new document will provide a much needed update. A small international group of experts will meet in December 2003 and undertake the writing of the review. The production date for the new edition will be decided by this group, and is likely to be late 2004 early The review as currently planned and outlined above will be a technical review i.e. an up-to-date summary of the evidence on the prevention of diabetes and its complications. We believe that it will also be important within the context of this joint WHO/IDF programme to have a document that provides practical advice on implementation. In particular we see the need for guidance on appropriate, costeffective approaches to the prevention of type 2 diabetes in low- and middle- income settings. It is planned that the technical review will be available as a printed document and to be downloaded over the internet. The more practical guidance would be available in the same way and would contribute to the materials and activities for outputs 4 and 5. Our current plan is not to undertake new work on deriving treatment guidance but to review the substantial literature that already exists and from this to define minimum care packages for low- and middle-income settings. Page 5

6 Proposed activities and comment on these from key stakeholders. Review approaches and available tools (e.g. on development and implementation of guidelines) for implementing change. Develop packages of tools for change that integrate minimum criteria, and that include approaches to monitoring their implementation and effectiveness. Widely disseminate tools. Comments, questions and requests for information Please let us know of any locally developed and relevant materials (e.g. training packages, guidelines/treatment proformas) for use in low and middle-income settings. Again, letting us know of any local examples would be much appreciated. Activities for output 5 increase in national programmes delivering the minimum criteria for prevention and care Review current guidance for national programmes in low- and middle-income settings. Modify guidance as needs be to incorporate the updated prevention advice arising from output 3. Identify countries without adequate national diabetes programmes in place. An adequate programme would be judged to be one that includes the minimum criteria as defined as part of output 4. Plan methods for encouraging uptake of programmes e.g. regional seminars, media campaigns, etc. Repeat survey and review of other evidence to assess whether there has been an increase in national programmes addressing the needs of low- and middleincome communities. Please send feedback by 31 January World Health Organization (NMH/MNC/DIA) Avenue Appia Geneva Switzerland diabetes@who.int Telephone: Dr Nigel Unwin Ms Amanda Marlin Fax: Web site: Please let us know of any examples of national programmes in low- and middleincome settings. Copies of any documents would be much appreciated. A WHO survey of countries with NCD programmes was carried out in 2000 and will be the starting point for this. Your suggestions for countries without, or with very limited, diabetes programmes that would be receptive to the need to improve their prevention and care, would be welcomed. Your thoughts on the best approach(es) to stimulating the uptake of national diabetes programmes would be appreciated. This activity highlights the need to find out if national diabetes programmes are reaching the economically less well off members of the population. This is in line with the overall aim of the programme, which is to improve diabetes care and prevention in low- and middle-income communities. Page 6

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