A Guide to National Diabetes Programmes

What is a national diabetes programme? A National Diabetes Programme is a systematic and co-ordinated approach to improving the organisation, accessibility, and quality of diabetes prevention and care which is usually manifest as a comprehensive policy, advocacy and action plan covering the: Main types of diabetes ie type 1 diabetes, type 2 diabetes and gestational diabetes Whole continuum of care from primary prevention to treatment and palliative care Resources, services and systems that support prevention and care

National Diabetes Programme The guide contains several sections: Getting started Determining the extent of the problem Preventing the problem Addressing the problem Evaluating progress Where to next?

Section 1: Getting started Making the Advocacy Case for Diabetes Developing a Framework for a National Diabetes Programme Establishing a National Diabetes Organisation

Getting started Make the Advocacy case for diabetes Play the hearts and minds game and play hard: - use evidence - use emotion But keep it simple and make it

Getting started Developing a Framework for a National Diabetes Programme What will be its focus and scope? Who will the National Diabetes Program target? People at risk of diabetes Particular types of diabetes, eg. type 1 diabetes, type 2 diabetes, gestational diabetes The three main types of diabetes

Getting started Developing a Framework for a National Diabetes Programme Mission State in a few words what is the fundamental issue being addressed, for example, “fight diabetes and win”, “reduce diabetes risk factors”.

Getting started Developing a Framework for a National Diabetes Programme Vision What would the diabetes situation in your country look like if your National Diabetes Programme achieved its mission.

Getting started Establishing a National Diabetes Organisation Having a national diabetes organisation enables a country to become a member of the IDF. Membership of the IDF provides the country member association with: - a voice in diabetes affairs at both regional and global levels - access to the IDF network of members associations, resources, and information

Section 2: Determining the extent of the problem Conducting a Situation and Needs Analysis Conducting a Baseline Prevalence Survey Assessing the Cost of Diabetes Assessing Community Awareness

Determining the extent of the problem Conducting a situation and needs analysis Be clear why you are conducting a situation and needs analysis What aspects of diabetes will the situation and needs analysis focus on: eg. services, costs, availability of medications. Will the situation and needs analysis be conducted nationally or will it be applied selectively to particular geographic areas What are the specific aims of the situation and needs analysis? What will be measured, assessed, counted, audited or analysed in order to achieve the aims of the situation and needs analysis? What strategies and techniques will be employed to collect the required information? Deciding how and to whom the results will be disseminated and how they can best be used will help determine what to focus on, what to assess and which methods are best suited to answer the questions being asked.

Determining the extent of the problem Conducting a Baseline Prevalence Survey In conducting a baseline survey, it may be useful to consider the following: Rationale for conducting the survey Scope (what other parameters will the survey assess in addition to basic demographics and diagnosis of diabetes) Focus (who will be surveyed?) Aim (agree on and clearly state and document the aim of the survey) Sampling (an accurate representation of the overall composition of the population eg. age, gender, socio-economic level) Data collection and management (designing data collection forms, ordering of data fields) Assessment issues (explicit protocols to guide the manner in which assessment procedures are carried out) Laboratory issues (eg. the supply, storage, and transport of reagents) Location and set up of survey venue Training of survey staff Ethical and safety considerations

Determining the extent of the problem Assessing the cost of diabetes Focus/viewpoint of the analysis Timeframe and study size Study designs

Determining the extent of the problem Assessing Community Awareness Example of a tool for assessing community awareness of diabetes:

Section 3: Preventing the Problem Individual/ High Risk approach Environmental approach

Preventing the problem The individual/High risk approach Focus on high risk individuals and encourage health professionals to: - identify people with risk factors -treat/manage to reduce risk factors - +/- community education programs

Preventing the problem The Environmental approach Healthy urbanisation Healthy food Healthy business Healthy public policy

Preventing the problem Focus on the whole population - or high risk groups within the population to develop health promoting, risk reducing environments:  Involve a range of sectors eg agriculture, education, transport  Focus on a variety of settings eg schools, workplace  +/- community education programs

Section 4: Addressing the problem Develop a community awareness campaign Early diagnosis of Type 2 Diabetes Routine Care and Monitoring of Diabetes Patient Education Psychological Issues Developing and Implementing Guidelines Developing the Diabetes Workforce and Services

Addressing the problem Develop a community awareness campaign Rationale Scope Aim Preparing the workforce The message Who the lead organisation/s Who else should be involved Key strategy Evaluation

Addressing the problem Early diagnosis Routine monitoring & management Early detection & management of complications Self care education Key Components of Good Diabetes Care

Addressing the problem Glycaemic control Kidney function Blood pressure Lipids Eyes Feet Routine Care and Monitoring of Diabetes

Addressing the Problem All people with diabetes should have access to self-care education to optimise the management and outcomes of their diabetes care. Education should include information about: -The causes, effects and management of diabetes -Self-care recommendations specific to the person’s type of diabetes and treatment -Strategies for avoiding short and long term diabetes complications -Principles and recommendations for nutrition and exercise -The administration of diabetes and related medications where applicable -Where and when to seek professional help for assistance with diabetes care Patient Education

Addressing the Problem Psychological issues

Addressing the Problem Developing and Implementing Guidelines The complexity of guidelines for diabetes Expertise required for developing evidence based guidelines Lead agency or group Endorsement of guidelines Options for generating guidelines

Cardiovascular Disease Diabetes Horizontal Integration Diabetes Tablets Services Ambulatory Care Community Health Services Hospitals Addressing the Problem Developing the Diabetes Workforce and Services

Role Delineation - Vertical Integration Highly specialised care Semi specialised care Routine care Tertiary Secondary Primary Addressing the Problem Developing the Diabetes Workforce and Services

Section 5: Evaluating Progress What should be assessed? Process indicators, eg. Number of weight loss or physical activity programs Surrogate outcome indicators, eg. Frequency and duration of hospital admissions Outcome (endpoint) indicators, eg. Incidence and prevalence of diabetes Collecting diabetes data

Evaluating Progress How should the data be collected and used? A common reason for collecting clinical diabetes data is to evaluate the effectiveness of care. This requires identifying and tracking people with diabetes to determine what happens to them. This, in turn, requires record linkage, financial resources and available local expertise Collecting diabetes data

Evaluating Progress National diabetes Programmes (NDPs) are essentially a policy process. The three stages of policy are development, implementation and evaluation. 1.Does a National Diabetes Programme exist? 2.Is it a comprehensive or single component programme? 3.Who is responsible? 4.Who is involved? 5.Are goals and priorities being actioned? 6.What is known about diabetes nationally? 7.Is appropriate diabetes care available to people with diabetes? 8.General implementation and evaluation strategy? Evaluating National Diabetes Programmes

Section 6: Where to next? Some possible changes in the focus of national diabetes programmes of the future might include consideration on: Diabetes and the environment Diabetes and the link with communicable disease Diabetes as a development issue New horizons – new partners National Diabetes Programmes of the future

What do we need to do? Develop agreed consistent standards Delineate service roles Train staff to the roles and standards Earlier diagnosis Better quality of prevention and care Information - not just data

The IDF Task Force on Diabetes and NCD Prevention, Policy and Practice has developed an initial set of 10 core standards for National Diabetes Programmes: 1.A National Diabetes Programme exists and is publically available 2.The goals and objectives of the National Diabetes Programmes are clearly documented 3.The National Diabetes Programme is endorsed and led by the Ministry of Health 4.The National Diabetes Programme has been allocated dedicated funding by the Government 5.The National Diabetes Programme includes: type 1 diabetes; type 2 diabetes; gestational diabetes Standards for National Diabetes Programmes

The IDF Task Force on Diabetes and NCD Prevention, Policy and Practice has developed an initial set of 10 core standards for National Diabetes Programmes: 6.The National Diabetes Programme covers specific areas, eg: ensuring equitable access to prevention and care services for all who need them; workforce development 7.There is a documented implementation plan for the National Diabetes Programme 8.An appropriately constituted steering committee or group is tasked with overseeing the implementation of the National Diabetes Programme. This should include a range of stakeholders, eg. Government authorities; community leaders; 9.The National Diabetes Programme takes a Patient Centred Approach 10.The National Diabetes Programme involves monitoring and surveillance of: prevalence and incidence; access to and outcomes of routine clinical care and services; availability of essential medications and supplies Standards for National Diabetes Programmes

Community-based Services Primary Health Care Guidelines, protocols referral criteria & pathways Training, equipping, and auditing of quality of care Referral Centres and Pathways Centre of clinical excellence for training and referral in Diabetes & Hypertension Consumer Action Consumer organisations, activities, advocacy

Determine what needs to be done - define the tasks Identify who can do the job or who can be retrained/refocussed to do it - role delineation Shift resources to support the new focus Refocussing Health Systems

What do we need to do? Refocus health systems on the priorities Make diabetes everybody’s business Make providers and services more effective Emphasise the role of communities Focus on families Make healthy lifestyle choices available and “inviting”

THE PLANNING PROCESS Planning is about “making what’s there work better!”

WHO SHOULD PLANS ENGAGE? Governments Communities Diabetes Associations Professional Associations Health Departments Other Govt Sectors Local Health Services Industry Funders The Workplace

Between the requirements of stakeholders and needs of the target groups  Primary prevention vs care of those already diagnosed  Type 1 and Type 2 diabetes FIND A BALANCE

n Define the tasks l Train staff on the competencies required l Equip the health facilities l Provide guidelines s Monitor the processes and outcomes What do we need to do?

Goal 1: Prevent or delay the onset diabetes in susceptible communities and individuals Examples Goal 2:Prevent or delay the development and progression of long term diabetes complications Goal 3: Increase the capacity of the health systems to deliver and monitor (equitable, effective, affordable services) for the care and prevention of diabetes

Framework

Goals to outcomes Clear and agreed Goals and Objectives Key strategies Indicators or expected outcomes Implementation plan

Critical factors for success Wide consultation and endorsement Commitment of Government Involvement of a range of stakeholders Strong, cohesive leadership Local champions