NONCOMMUNICABLE DISEASES SURVEILLANCE in UNHCR Public Health Programmes

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 1. Facility-based Health Information Systems 2. Balanced scorecards 3. Health Access and Utilization Surveys 4. SENS Surveys 5. Electronic Medical Records 6. Integration into National Data Collection and Reporting Systems 2

Main Components of NCD Surveillance WHO’s Global Monitoring Framework 1. Mortality and morbidity Premature mortality from four main NCDs • Cancer incidence by type of cancer • 2. 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) • 3. 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 • 3

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) 26 countries, 143 sites, 243 partners about 3. 2 million • Developed for health services which are not yet well adapted to manage NCDs persons under surveillance 4

NCD data in the HIS Proportion of NCD consultations in UNHCR-supported Primary Health Care Services (HIS data 2015) a bi Za m en m Ye an da Ug nd Th ai la n da So ut h Su an da l Rw pa Ne ia ib Na m ria be Li ny a Ke na Gh a a op i hi ea Et itr i Er ou t Dj ib ng o Re pu bl ic of t Ba he Co DR C ad Ch ng la de Bu sh rk in a. F as o Bu ru nd i 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 5

NCD data in the HIS Proportion of NCD consultations in UNHCR-supported Primary Health Care Services (HIS data 2015) a bi Za m en m Ye an da Ug nd Th ai la n da So ut h Su an da l Rw pa Ne ia ib Na m ria be Li ny a Ke na Gh a a op i hi ea Et itr i Er ou t Dj ib ng o Re pu bl ic of t Ba he Co DR C ad Ch ng la de Bu sh rk in a. F as o Bu ru nd i 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 6

NCD data in the HIS Proportion of NCD consultations in Dadaab UNHCR-supported Primary Health Refugee Camp (data 2013)Care Services (HIS data 2015) 403, 000 population 906, 882 OPD consultations annually a bi Za m en m Ye an da Ug nd la ai Th So ut h Su da n da an Rw pa l Cardiovascular Disease 43% Ne ia ib Na m ria be Li ny a Chronic Respiratory Diseases 9% Ke na Gh a a op i hi ea Et itr i Er ou t Dj ib ng o Acute 876985 0. 96703 3197262 709 Re pu bl ic of t Ba he Co DR C Ch ad Chronic 29897 0. 03296 6802737 2911 ng la de Bu sh rk in a. F as o Bu ru nd i 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 7

NCD data in the HIS NCD consultations in Za’atri Camp, Jordan (HIS data 2015) N= 78, 677 8

Zaatri Mortalities - First Half 2016 Mortality NCDs 38. 5% 61. 5% Other Mortalities from NCDs - Zaatri Jan-Jun 2016 N=56 19. 6% 1. 8% Cardiovascular Cancer 8. 9% Diabetes Chronic Respiratory Disease 67. 9% • 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 Other 9

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. 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. 12

2. Balanced Scorecards • Tool to assess the quality of care and performance of health services in 5 areas i. Services provided ii. Staffing and coverage iii. Equipment and supplies iv. Quality of care v. Health worker and patient satisfaction • Entered into tablets • Measures indicators at the facility level • Routinely conducted 1 -2 times per year in all facilities 13

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 14

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 Pro. Gres 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 15

4. SENS Survey • SENS= Standardized Expanded Nutrition Surveys • standardised method for collecting, analysing and presenting individual and householdbased 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 16

5. Electronic Medical Records 17

NCD data requirements • Level Individual Data NCD Patient Aggregate Data • Purpose Record for clinical care and follow up Surveillance and monitoring • Process Detailed clinical record Tally in predefined categories • Outcome - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends 7

NCD data requirements • Level • Purpose Individual Data Record for clinical care and follow up NCD Patient Aggregate Data Surveillance and monitoring Health Information Systems • Process • Outcome Detailed clinical record - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends 8

NCD data requirements • Level • Purpose Individual Data Record for clinical care and follow up NCD Patient Aggregate Data Surveillance and monitoring Medical records • Process • Outcome Detailed clinical record - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends 9

NCD data requirements • Level • Purpose Individual Data Record for clinical care and follow up Medical records • Process • Outcome Detailed clinical record - Improved clinical management of patient - Improved adherence - Improved targeted prevention and follow-up NCD Patient Aggregate Data Surveillance and monitoring Health Information Systems Tally in predefined categories - Improved quality and effectiveness of NCD service - Improved use of resources - Monitor NCD trends 10

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 22

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 23

Conclusion 1. Need agreed set of NCD-related indicators to monitor in humanitarian situations 2. 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 3. National information systems for NCDs should ideally be able to disaggregate data by age, gender and nationality 24