HOTLINE 1 O doente está primeiro! A Plataforma de Dados na Saúde e o Registo Nacional de Cardiologia de Intervenção.

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1 HOTLINE 1 O doente está primeiro! A Plataforma de Dados na Saúde e o Registo Nacional de Cardiologia de Intervenção. Epidemiologia da doença cardíaca. O contributo dos registos observacionais. Carla Araújo Institute of Public Health of the University of Porto (ISPUP) Departamento de Epidemiologia Clínica, Medicina Preditiva e Saúde Pública, FMUP CHTMAD, Vila Real 19/04/2015

2 Epidemiologia da doença cardíaca. O contributo dos registos observacionais. Objectives: - To identify strengths and limitations of observational studies; - To discuss challenges of observational data quality; - To present the main sources of patient-level data in Portugal.

3 Introduction - background Real-effectiveness medicine PORTUGAL HEALTH SYSTEM PERFORMANCE ASSESSMENT WHO 2010 report Areas to improve: - morbidity indicators Malmivaara A. Ann Med data/assets/pdf_file/0006/131766/e94518.pdf - inequalities in health status by gender and geographical regions - lack of a systematic approach to cost-effectiveness assessment for technologies, policies and management practices

4 Strengths and limitations of observational studies Evidence-based cardiovascular medicine (RCT and meta-analysis) - Expensive - Lengthy - Not always feasible - External validity Improving outcomes Real-effectiveness cardiovascular medicine (observational data; secondary and primary; retrospective and prospective) - Inherent causal inference challenge - Internal validity challenge - Debatable if the results can guide clinical practice (adverse events vs effectiveness claims) -Identify outcomes of interest (and trends) -Validate outcomes DELIVER THE BENEFITS OF REAL WORLD DATA IN HEALTH OUTCOMES RESEARCH AND HEALTH RESOURCE MANAGEMENT

5 Challenges of data quality measuring quality of care in ACS Variables influencing prognosis 1. Health care resources Structure indicators 2. Severity of the event ACS type Cardiovascular risk factors Previous medical history Clinical presentation 3. Management (effective, efficient, safe, timely) Process indicators Prognosis (outcomes) In-hospital mortality (total, specific cause, associated with procedure) Out of hospital mortality Morbidity: left systolic ventricular dysfunction quality of life costs Outcome indicators

6 Main sources of patient-level data in Europe Administrative databases Disease registries Electronic medical records (EMR) Specific research projects - Patient identification (diagnosis, basic demographics) - Treatment data - Outcome data - Data on covariates + Other routinely collected health-care data

7 Main sources of patient-level data in Portugal - Hospital administrative database ACSS (Administração Central do Sistema de Saúde) Crude mortality rate Ischemic Heart Disease (2000 to 2007) Standardized Mortality Rate Residuals of the linear multiple regression. Rates per inhabitants. Ferreira-Pinto LM, et al. BMJ Open2012;2:e000595

8 Main sources of patient-level data in Portugal - ACSS

9 Main sources of patient-level data in Portugal - INE Time trends in coronary heart disease , by sex: age standardized (European population) mortality rates and numbers of deaths, by Portuguese region. C. Araújo, M. Pereira, A. Azevedo, 2015

10 C. Araújo, M. Pereira, A. Azevedo, 2015

11 Main sources of patient-level data in Portugal - Disease registries National Cardiology Data Collection Center (01/2002) (National or European) Acute Coronary Syndromes (ProACS) Interventional Cardiology (PRIC) Continuous registries Metabolic Syndrome Hypertension Tobacco Type 2 diabetes Dyslipidemia Heart failure Hypertrophic cardiomyopathy Myocarditis Takotsubo Periodic registries EUROASPIRE-IV Percutaneous aortic valve ( )

12 Main sources of patient-level data in Portugal - Portuguese Registry on Acute Coronary Syndromes (ProACS) Compliance of pharmacological treatment for non-st-elevation acute coronary syndromes with contemporary guidelines: influence on outcomes Hélder Dores et al. Cardiovasc Diagn Ther 2014;4(1):13-20

13 Main sources of patient-level data in Portugal - specific research projects : EURHOBOP study A European benchmarking system to evaluate in-hospital mortality rates in acute coronary syndrome: The EURHOBOP project Irene R. Dégano, ( ) Ana Azevedo, ( ), Carla Araújo,,JohnLekakis, Roberto Elosua, Jaume Marrugat. International Journal of Cardiology 182 (2015)

14 Main sources of patient-level data in Portugal - EURHOBOP study International differences in acute coronary syndrome patients baseline characteristics, clinical management and outcomes in Western Europe: the EURHOBOP study Logarithmic OR and 95% CIs for risk of inhospital death for each country Romain André, ( ), Carla Araújo, ( ), Marta Pereira, Jaume Marrugat, Jean Ferrières. Heart 2014;0:1 7

15 Main sources of patient-level data in Portugal - specific research projects: EPIHeart study FCT project PTDC/DTP-EPI/0434/2012 Patients delays from acute coronary syndrome symptoms onset to first medical contact: the EPIHeart study Marta Viana, Vitor Barros, Andreia Borges, Olga Laszczynska, Carla Araújo, Helena Meneses, Paula Dias, Maria Júlia Maciel, Ilídio Moreira, Ana Azevedo New-onset atrial fibrillation in acute coronary syndrome patients: preliminary data from the EPIHeart study Pedro Magalhães, Carla Araújo, Vânia Ribeiro, Olga Laszczynska, Marta Pereira, Sílvia Fernandes, Ana Paula Pereira, Paula Dias, Maria Júlia Maciel, Ilídio Moreira, Ana Azevedo Acute coronary syndrome perception: determinants and impact on medical care seeking Vânia Ribeiro, Filipa Melão, Olga Laszczyńska, Carla Araújo, Marta Viana, José Ilídio Moreira, Maria Júlia Maciel, Paula Dias, Ana Azevedo Socio-economic position and pharmacological treatment for cardiometabolic risk factors before an acute coronary syndrome: the EPIHeart study Filipa Melão, Marta Viana, Carla Araújo, Olga Laszczynska, Marta Pereira, Teresa Pires, Rui Almeida, Paula Dias, Ilídio Moreira, Maria Júlia Maciel, Ana Azevedo

16 Main sources of patient-level data in Portugal IMPACT model CORONARY HEART DISEASE TRENDS IN PORTUGAL Risk factors Event Treatment Death Mortality IMPACT model

17 Main sources of patient-level data in Portugal IMPACT model Pereira M, Azevedo A et al Circ Cardiovasc Qual Outcomes. 2013;6:

18 Main sources of patient-level data in Portugal IMPACT model Explaining the decline in coronary heart disease mortality in Portugal between 1995 and RISK FACTORS -42% Number of deaths % unexplained Year 2008 TREATMENTS -50% DPPs = Number of CHD deaths observed (last year) - number of CHD deaths expected (last year) Pereira M, Azevedo A et al Circ Cardiovasc Qual Outcomes. 2013;6:

19 Main sources of patient-level data in Portugal - future directions Record linkage Quality registries Patient registry Statistics Sweden Personal identifying number Electronic medical records Disease registry Social insurance agency

20 HOTLINE 1 O doente está primeiro! A Plataforma de Dados na Saúde e o Registo Nacional de Cardiologia de Intervenção. Epidemiologia da doença cardíaca. O contributo dos registos observacionais- conclusions The real-effectiveness medicine framework intends to produce as much good and as little harm as possible for each patient, with reasonable costs to the society and is suggested for clinicians, organizations, policy-makers, and researchers; There is already available observational cardiovascular data in Portugal from different sources and therefore with different strengths and limitations; These real world data represent opportunities potentially transformative, if challenges of data quality are correctly addressed; Efforts are still necessary to develop this information infrastructure and to invest in the workforce capacity to extend its utility to research and public health use; Funding and policy issues concerning how broadly the data can be used to other purposes are important barriers; Workable solutions are emerging to permit data linkage (creation of an unique and national personal identification code?); The ultimate goal of real world data is better decision making in Portugal. Obrigada! Carla Araújo

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