1. 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

2. 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

3. 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

4. 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

5. 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

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

7. 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.

8. 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

9. 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 years from cardiovascular diseases, cancer, diabetes or chronic respiratory diseases)
35% of overall mortality in in Zaatri was premature deaths

10. 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.

11. 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.

12. 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 .

13. 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

14. 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

15. 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 % of adults with chronic conditions weren’t able to access medicine or other health services as needed (cf. 23.7% in 2014)

16. 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)

17. 5. Electronic Medical Records

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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