Key elements in a surveillance system Patrick Rolland EPIET / EUPHEM Intro Course 2012 & 2 Le fil rouge in surveillance? Surveillance is Information for action! & 3 Good reminder: surveillance? Langmuir AD., 1963 “Systematic collection, consolidation, analysis and dissemination of data on specific disease” Thacker SB., 1996 “The final link is the application of these data to prevention and control” & 4 Good reminder: surveillance loop Objectives Evaluation Data collection Action! Data analysis Information & 5 Aim and content of the lecture Aim: To understand key elements in a surveillance system - From a clear understanding of the purpose - To the right dissemination of information Content - Main objectives of a surveillance system - Checklist of key elements, step by step & 6 Main objectives of a surveillance system & 7 Main objectives Describe: produce information in terms of TPP Alert: detect epidemics or emerging events Evaluate: assess prevention or control measures And also: Generate hypotheses for research Detect changes in health practice Plan public health actions and resources & 8 But keep in mind the goal! Surveillance is Information for action! By implementation of prevention and control measures In order to reduce morbidity and mortality & 9 Incidence (per 100,000) Describe: Time = Graph Weekly incidence rate of flu-like syndromes, 2009-2012, France Source: GP network “Réseau unifié” Week & 10 Describe: Place = Map Weekly incidence rate of acute diarrhea (per 100,000) 1 to 7 march 2012, France Source: GP network “Réseau sentinelles” & 11 Describe: Person = Table Severe cases of influenza, winter 20112012, France Characteristics of persons Source: Intensive care units Network Burden & 12 Alert: detect an epidemic Weekly incidence of flu-like syndromes, 2007-2012, France Source: GP network “Réseau sentinelles” Incidence (per 100,000) Incidence Threshold Exceedence Week & 13 Alert: detect an emerging phenomena Invasive meningococcal infections by serogroup B, C, W135 et Y, 1985-2006, France Source: InVS, NRC for meningococci 450 BB 350 Nombre de cas déclarés Number of cases 400 C Y W135 C W 135 Y 300 250 200 150 Emergence of W135 100 50 0 85 86 87 88 89 90 91 92 93 94 95 96 années Year 97 98 99 00 01 02 03 04 05 06 & 14 Evaluate: prevention/control measure 180 Vaccination implementation 80 160 140 120 40 100 80 0 60 40 Couverture (% ) (x 1000) of cases Number Notifications (x 1000) 200 Vaccinate coverage (%) Cases of Pertussis, England and Wales, 1940-1999 20 0 1940 1950 1960 1970 Année Year 1980 1990 & 15 Evaluate: prevention/control measure Cases of legionellosis, 1988-2011, France Source: Notifiable disease, InVS Incidence (per 100,000) Number of cases No cases Incidence Reinforced surveillance New investigation guide Urine antigen testing Year & 16 Key elements in a surveillance system & 17 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 18 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 19 Justification of implementation Ask yourself two main questions: - Should this event be under surveillance? • High frequency? • High severity? • High socioeconomic cost? - Do some prevention or control measures exist? And these two additional questions: - Do we have existing data that already answer? - Do we have resources to set up a new system? & 20 Health events under surveillance Infectious diseases - Notifiable diseases Health-care associated infections (HCAI) Vaccine-preventable diseases Food and waterborne diseases Sexually transmitted infections (STI) Zoonoses Vector-borne diseases But also? & 21 Health events under surveillance Chronic diseases and injuries: cancers, accidents, traumas, cardiovascular diseases, etc. Occupational health: cancers, musculoskeletal disorders, respiratory diseases, mental health, etc. Environmental hazards: air pollution, ionizing radiations, heat/cool waves, water/soil pollution, etc. & 22 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 23 Objectives of the system Primary objective: To describe a health-related event in population-based or in a specific population With two possible aims (sometimes both): - To alert by early detection of epidemics or emerging pathologies that need timely action - To evaluate the efficiency of prevention or control measures & 24 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 25 Passive and active system Consideration useful for discussion Passive: “The data come to you” - Data collection based on existing information - Simple, not burdensome but could be incomplete E.g.: notifiable diseases, deaths, emergency data Active: “You go towards the data” - Data collection specially set up - Good quality of data but required resources E.g. : injuries, non-notifiable infectious diseases, etc. & 26 E.g. of passive system % of gastroenteritis among emergency consultations, seasons 2010-2011 and 2011-2012, Aquitaine, France 4,0% 3,5% 3,0% 2,5% 2,0% 1,5% 1,0% 0,5% 2011-2012 Week 2010-2011 S14 S11 S08 S05 S02 S52 S49 S46 S43 S40 S37 S34 S31 S28 S25 S22 S19 0,0% S16 Proportion of cases 4,5% & Période de surveillance Day 30-sept. 26-sept. 22-sept. 18-sept. 14-sept. 10-sept. 6-sept. 2-sept. 29-août 25-août 21-août 17-août 13-août 9-août 5-août 1-août 28-juil. 24-juil. 20-juil. 16-juil. 12-juil. 8-juil. 4-juil. 30-juin // 1-juin Number of cases Nombre de cas d'envenimations 27 E.g. of active system Cases of envenomation by Physalia Physalis reported by lifeguards, Aquitaine Atlantic Coast, Summer 2011, France 100 90 80 70 60 50 40 30 20 10 0 & 28 Exhaustive vs. sentinel system Important consideration for data analysis Severe diseases or low-frequency diseases requiring timely action Exhaustive system (= all providers) E.g.: cancers registries, notifiable diseases High-frequency diseases or less-severe diseases Sentinel system (= selected providers) E.g.: seasonal flu, occupational diseases (except cancers) & E.g. of exhaustive system Cancers among women, Year 2005, Gironde, France Source: Cancer registry of Gironde Autres Sarcomes des os et des tissus mous Rein Pancréas ORL Primitif inconnu Ovaire Mélanomes de la peau Col de l'utérus Corps de l'utérus Système nerveux central Trachée-Bronches-Poumon Thyroïde Peau autre que mélanomes Côlon-Rectum Sein Cancer causes Principales localisations 29 Incidence Mortalité 3. Skin cancer 2. Colorectal cancer 1. Breast cancer 0 200 400 600 800 Nombre de cas Number of cases 1000 1200 1400 & 30 E.g. of sentinel system Prevalence of occupational diseases (except cancers), Year 2010, Region of Aquitaine, France Source: Sentinel Network of occupational physicians (n=92) Male (%) Female (%) Total (%) Musculoskeletal disorders 3.4 3.5 3.4 Psychic suffering 1.0 2.1 1.5 Skin rashes and allergies 0.3 0.4 0.3 Hearing disorders 0.4 / 0.2 Total 5.2 6.0 5.6 & 31 Case vs. syndromic system Case system (traditional system) - Targets a defined health-related event E.g.: mesothelioma, Lyme disease, diabetes, etc.. Syndromic system (“before diagnosis”) - For early detection, evaluation of event impact - Based on existing activity data, real-time collection, analysis and interpretation data E.g.: emergency services, virology labs, deaths certificates, medicine sales, absence in schools, etc. & 32 E.g. of case system Occupations at risk for mesothelioma, France Occupations Source: Program of Mesothelioma Surveillance (1998-2012), InVS Odds-ratio (95% CI) & 33 E.g. of syndromic system % of gastroenteritis among emergency consultations, seasons 2010-2011 and 2011-2012, Aquitaine, France 4,0% 3,5% 3,0% 2,5% 2,0% 1,5% 1,0% 0,5% 2011-2012 Week 2010-2011 S14 S11 S08 S05 S02 S52 S49 S46 S43 S40 S37 S34 S31 S28 S25 S22 S19 0,0% S16 Proportion of cases 4,5% & 34 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 35 Case definition The “heart” of the system! Must be clear and simple Based on criteria: clinical, biological, epidemiological May include: - Classification (possible, probable, confirmed) - TPP (Time-Place-Person) information & 36 E.g. for measles definition as notifiable disease Clinical criteria Laboratory criteria Source: Case definitions of notifiable diseases Commission Decision 2008/426/EC – 28-IV-2008 Epidemiological criteria Case classification & 37 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart of data and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 38 Population under surveillance Depends on characteristics of health-event E.g.: Hemolytic Uremic Syndrome (HUS) - Rare disease that predominantly affects children, needs timely action in outbreak Population under surveillance (France): children (< 15 years) hosted in pediatric and nephrology hospital services (N=31) & 39 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 40 Data providers and data sources Data providers: health professionals, laboratories, health insurance funds, civil status offices, etc. Data sources - Administrative: death certificates, hospital systems, etc. - Medical: patients folders, notifiable diseases, etc. - Biological: virology, bacteriology, toxicology samples - Environmental: air pollution sensors, individual ionizing radiations card for exposed workers, etc. & 41 E.g. data provider: NRC (France) 47 National Reference Centers and 34 Associated Laboratories Anaérobies et Botulisme (LA) Arbovirus (LA) ATNC Brucella Borrelia (LA) Campylobacter & Helicobacter Charbon (LA) Chlamydiae Cytomégalovirus Enterovirus Escherichia coli & Shigella (LA) Francisella tularensis Gonocoques Haemophilus influenzae Legionella Leishmania Mycobactéries et résistance des mycobactéries Paludisme (2 co-responsables) Pneumocoques Résistance aux antibiotiques (LA) Rickettsia, Coxellia & Bartonella Staphylocoques Streptocoques Syphilis Trichinella Toxoplasmose 15 NRC and 3 AL Arbovirus Arbovirus & influenza virus en AG Charbon Borrelia Anaérobies et Botulisme Chimiorésistance du paludisme en Antilles Guyane Coqueluche et autres bordetelloses Corynebactéries toxinogènes Escherichia coli & Shigella Fièvres hémorragiques virales Leptospires Listeria Méningocoques Mycologie et antifongiques Peste et autres yersinioses Rage Salmonella Résistance aux antibiotiques Streptocoques (LA) Virus des Hépatites B & C (LA) Vibrions et cholera Virus Influenza One NRC per infectious disease 32 NRC and 31 AL Pasteur Institute (Paris) Within hospitals, universities, other research institutes Virus de la rougeole VIH Virus Influenza Virus entériques Virus des hépatites A et E Virus des hépatites B, C et Delta & 42 E.g. data source: ND (France) 27 notifiable diseases (ND) require surveillance and timely action Frequent ND (n=14) • • • • • • • • • • • • • • Botulisme Brucellose Chikungunya Dengue Fièvres typhoïdes et paratyphoïdes Hépatite aiguë A Infections invasives à méningocoques Légionellose Listériose Rougeole Saturnisme de l’enfant mineur MCJ et ESST Toxi-infection alimentaire collective Tuberculose Infrequent ND (n=10) • • • • • Choléra (RSI) Diphtérie Fièvres hémorragiques africaines Fièvre jaune (RSI) Paludisme autochtone et paludisme importés dans DOM Peste (RSI) Poliomyélite Rage Typhus exanthématique • • • • Bioterrorism-related ND (n=3) • Charbon, Tularémie, Variole 4 ND require surveillance only • • • Infection à VIH quel qu’en soit le stade Hépatite aiguë B Tétanos • Mésothéliome (entrée en 2012) & 43 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart of data and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & Nominative data on patient and provider 44 E.g. French form for mesothelioma notiable disease Anonymous data on patient diagnosis (by clinician&pathologist) Dates and signatures of provider and sanitary authority & 45 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 46 E.g. of flow chart: ND (France) Politic of Health Patient Public Health High Council Health Regional Agencies Alert Health professionals, laboratories, etc. Ministry of Health Reference Centers Experts Networks Clinicians/Pathologists Partners National/International & 47 Data transmission Reliable and fast - Electronic: e-mails, websites - And: phone, fax and mail Low frequency - Daily - Weekly - Monthly Secure - Regularity, punctuality, exhaustiveness And don’t forget the “Zero reporting” & 48 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 49 Data validation and data analysis Data validation - Missing data - Duplicates Data quality Data analysis Indicators: frequency, severity Methods: descriptive, analytical Illustrations: tables, graphs and maps Keep in mind: Time-Place-Person! & 50 E.g. of data analysis: time series Daily deaths, summers 1999-2002 vs. 2003, France Source: Syndromic Program, InVS 350 35 Temperature 1999-2002 250 25 200 20 150 15 2003 Deaths 100 10 1999-2002 50 Temperature (°C) 30 Température (°C) Décès journaliers Number of deaths 300 2003 5 0 0 25-juin 30-juin 05-juil 10-juil Décès 1999_2002 15-juil 20-juil Décès 2003 25-juil 30-juil 04-août T moy 1999_2002 Day (25 June to 19 august) 09-août 14-août 19-août T moy 2003 & 51 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 52 Dissemination/communication data Systematic and regular - For stakeholders, decisions makers - For other professionals, public, medias Adapted - To “Those who need to know” - To the urgency of the situation Format - Report, article, flash news, press release etc. - But also: phone, e-mail, fax, mail Factor of motivation/improvement & 53 E.g. report at local level “Point épidémio” France, Bordeaux (InVS, south west) Weekly report on health status of population Topics: Outbreaks Seasonal pathologies Notifiable diseases Virology surveillance Deaths & 54 E.g. report at international level CDC (USA) WHO (Switzerland) & 55 E.g. press release At local level (e.g. France, Bordeaux) At international level (e.g. Europe) & 56 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 57 Human and financial resources From the budget to the expenses - Salaries, travels, equipments, furniture, etc. Useful to negotiate resources, check the workplan, assess the cost of the system & 58 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 59 Data security and confidentiality “Critical point” in surveillance system Public heath data - Often personal and private in nature - Might directly identified individuals Take into account policies and protection for personal data - Data collection often under laws & 60 Key elements Justification of implementation Objectives of the system Types of system Case definition Population under surveillance Data providers and data sources Data elements and data collecting tools Flow chart and data transmission Data validation and data analysis Dissemination and communication data Human and financial resources Data security and confidentiality Evaluation of system & 61 Aims of evaluation Ask yourself the fundamental question: Have the objectives been met? And these additional questions: - Did the system generate needed answers? - Was the information timely? - Was it useful for decisions makers? - How was the information used? - What could be done to improve the “attributes”? - Is it useful to continue the surveillance? & 62 The “9” attributes of a system (1) Simplicity: refers to structure and ease operation Flexibility: ability to adapt to changing needs Data quality: refers to data completeness&validity Acceptability: willingness of persons and organizations to participate Sensitivity: refers to proportion of detected cases by the system (“A / A + C”) & 63 The “9” attributes of a system (2) PVP: refers to proportion of reported the cases that actually have the event (“A / A + B”) Representativeness: ability to describe the event over time and its distribution in the population Timeliness: reflects the speed between system steps of the system Stability: refers to reliability and availability & 64 Conclusion & 65 Main messages Justification - Relevance of the event to be under surveillance - Existence of prevention and control measures Objectives and aims To describe – To alert – To evaluate To produce information for action In order to reduce morbidity and mortality Requirements - “Good data”, involvement of stakeholders - Regular evaluation of the system & 66 One useful book 3rd edition September 2010 Lisa M. Lee et al. & 67 Don’t forget the surveillance loop! Objectives Evaluation Data collection Action! Data analysis Information & 68 Le fil rouge in surveillance? Surveillance is Information for action! &