Non-communicable Diseases SURVEILLANCE in UNHCR Public Health Programmes Ann Burton Chief, Public Health Section, DPSM, UNHCR Geneva Improving Care of People with NCDs in Humanitarian Settings Symposium of the London School of Hygiene & Tropical Medicine and Médecins Sans Frontières London, 2 September, 2016

UNHCR’s Health Information System Tools and Responses Facility-based Health Information Systems Balanced scorecards Health Access and Utilization Surveys SENS Surveys Electronic Medical Records Integration into National Data Collection and Reporting Systems

Main Components of NCD Surveillance WHO’s Global Monitoring Framework Mortality and morbidity Premature mortality from four main NCDs Cancer incidence by type of cancer Risk factors Behavioral (harmful use of alcohol, physical inactivity, salt/sodium intake and tobacco use) Biological (prevalence of raised blood pressure, prevalence of raised blood glucose or diabetes, obesity) Health System responses Drug therapy to prevent heart attacks and strokes Essential NCD medicines and basic technologies to treat major NCDs Availability of Palliative care, HPV vaccine, Hepatitis B vaccine

1. UNHCR’s Health Information System A surveillance tool mainly to monitor communicable diseases , reproductive health, and nutrition and mortality Limited data on NCDs, injuries and mental health (proportional morbidity) Developed for health services which are not yet well adapted to manage NCDs 26 countries, 143 sites, 243 partners about 3.2 million persons under surveillance HIS alone is not adequate to addressing the monitoring needs for NCDs

NCD data in the HIS Proportion of NCD consultations in UNHCR-supported Primary Health Care Services (HIS data 2015) We are missing out on many NCDs because: they are not adequately addressed at primary care level (detection, management and follow up but also skills and capacity) they are not adequately monitored

NCD data in the HIS Proportion of NCD consultations in UNHCR-supported Primary Health Care Services (HIS data 2015)

NCD data in the HIS Dadaab Refugee Camp (data 2013) 403,000 population 906,882 OPD consultations annually Proportion of NCD consultations in UNHCR-supported Primary Health Care Services (HIS data 2015) Chronic Respiratory Diseases 9% Cardiovascular Disease 43% Consultations for chronic conditions may only be 3%, but with nearly 1 million OPD consultations annually, this is still a significant number of almost 30,000 patient encounters.

NCD data in the HIS NCD consultations in Za’atri Camp, Jordan (HIS data 2015) N= 78, 677 Add as a proportion of total consultations 78, 677 NCD 461,370 = 17% of total consultations 74% of total were acute In the middle east initially with Iraqis and more recently with Syrian refugees saw the need to improve management and data around NCDs

Mortality Cause-specific mortality by gender and age in camp settings but not in non-camp settings Possible to report on premature deaths due to NCDs (deaths in those aged 30-70 years from cardiovascular diseases, cancer, diabetes or chronic respiratory diseases) 35% of overall mortality in 2015 in Zaatri was premature deaths

Beyond HIS Data – Going the Extra Mile Objectives of the UNHCR HIS To rapidly detect and respond to public health problems and epidemics To monitor trends in public health status and continually address health-care priorities To evaluate the effectiveness of interventions and service coverage To ensure that resources are correctly targeted to areas and groups of greatest need To evaluate the quality of health programmes.

Beyond HIS Data – Going the Extra Mile Objectives of the UNHCR HIS To rapidly detect and respond to public health problems and epidemics To monitor trends in public health status and continually address health-care priorities To evaluate the effectiveness of interventions and service coverage To ensure that resources are correctly targeted to areas and groups of greatest need To evaluate the quality of health programmes. The core functionality of the HIS as a surveillance system can only adequately address the first two objectives.

Beyond HIS Data – Going the Extra Mile Objectives of the UNHCR HIS To rapidly detect and respond to public health problems and epidemics To monitor trends in public health status and continually address health-care priorities To evaluate the effectiveness of interventions and service coverage To ensure that resources are correctly targeted to areas and groups of greatest need To evaluate the quality of health programmes. The HIS contributes to the objectives of monitoring quality, effectiveness and reach of health programmes but more data is needed and in response UNHCR developed additional tools .

2. Balanced Scorecards Tool to assess the quality of care and performance of health services in 5 areas Services provided Staffing and coverage Equipment and supplies Quality of care Health worker and patient satisfaction Entered into tablets Measures indicators at the facility level Routinely conducted 1-2 times per year in all facilities To identify gaps and develop targeted recommendations To mobilise additional training, resources or technical support Score Follow-up interval <40% after 3 months; 40–60% after 6 months and >60% after 1 year

Balanced Scorecard – NCD Additions 2016 Availability of medications, equipment, laboratory investigations to manage common NCDs (based on predetermined list) Use of up-to-date and evidence-based clinical protocols Systematic referrals between clinician and health educator Health educators have IEC materials for main NCDs to support counselling Use of recall system to remind patients of follow up visits Exit interviews with patients Audit of clinical records When we started using this in Jordan and Lebanon we found that it was not well adapted to settings with a high prevalence of NCDs. It was decided to revise the score card in 2016 and one of the areas to be introduced was NCD management

3. Health Access and Utilization Survey (HAUS) Survey tool specifically designed for non-camp settings where refugees access a variety of health services (i.e. national, private, UNHCR-supported, other NGOs) Households randomly selected from the ProGres data base Interviews done by telephone not face-to-face Provides data on recent health needs, health expenditure, health seeking behaviour, barriers to access including cost. Includes questions related to NCDs Proportion of household member over 18 with NCDs by type (self reported) Last time sought health care for NCDs and whether it was received, what costs were and barriers Monitoring of change over time e.g. Jordan 2015 58.3% of adults with chronic conditions weren’t able to access medicine or other health services as needed (cf. 23.7% in 2014)

4. SENS Survey SENS= Standardized Expanded Nutrition Surveys standardised method for collecting, analysing and presenting individual and household- based data relating to nutrition status and determinants Nutrition – anthropometric data and anaemia prevalence in children six to 59 months and women of reproductive age Assessing adolescents and adults for overweight and obesity not routinely included To include significantly increases resources needed for the survey Also includes relevant health, food security, WASH and IYCF data Maintains quality standards for the measurement of nutrition indicators. Prevalence of overweight and obesity in adolescents (de ned according to the WHO growth reference for school-aged children and adolescents, overweight – one standard deviation body mass index for age and sex, and obese – two standard deviations body mass index for age and sex) Age-standardized prevalence of overweight and obesity in persons aged 18+ years (de ned as body mass index ≥ 25 kg/ m2 for overweight and body mass index ≥ 30 kg/m2 for obesity)

5. Electronic Medical Records

NCD data requirements Level Purpose Process Outcome NCD Patient Aggregate Data Surveillance and monitoring Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Detailed clinical record Record for clinical care and follow up Individual Data Level Purpose Process Outcome

NCD data requirements Level Purpose Process Outcome NCD Patient Aggregate Data Surveillance and monitoring Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Detailed clinical record Record for clinical care and follow up Individual Data Level Purpose Process Outcome Health Information Systems

NCD data requirements Level Purpose Process Outcome Medical records NCD Patient Aggregate Data Surveillance and monitoring Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Detailed clinical record Record for clinical care and follow up Individual Data Level Purpose Process Outcome Medical records

NCD data requirements Level Purpose Process Outcome Medical records NCD Patient Aggregate Data Surveillance and monitoring Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Detailed clinical record Record for clinical care and follow up Individual Data Level Purpose Process Outcome Medical records Health Information Systems integrating recall systems, reminders and facilitating audits

How can NCD data requirements be met? Are Electronic Medical Records a (the) solution? Individual case management data is complex. What exactly do we need out of this for surveillance purposes? Which indicators can be collected from this data? Data confidentiality and data protection standards must be respected and upheld. Increased demand from field practitioners . Technologically it is possible and can be integrated with surveillance systems. Costs and connectivity may limit use

6. Integration into National Systems and Responses Biological and behavioral risk factors can be assessed by including refugees in national STEP surveys with an adequate sample size e.g. Jordan 2017 National cancer registries where they exist should ideally collect data disaggregated by nationality and refugee status Vital registration systems would also be strengthened by collecting nationality (and refugee status) sensitive data

Conclusion Need agreed set of NCD-related indicators to monitor in humanitarian situations EMR provide opportunities to improve clinical management, data collection and facilitate clinical audits of quality of care but are costly and require information technology expertise that may not be available in many humanitarian settings National information systems for NCDs should ideally be able to disaggregate data by age, gender and nationality