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

(1)

Epidemiologia da doença cardíaca. O contributo dos registos observacionais.

HOTLINE 1

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

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

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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.

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PORTUGAL HEALTH SYSTEM PERFORMANCE ASSESSMENT WHO 2010 report

http://www.euro.who.int/__data/assets/pdf_file/0006/131766/E94518.pdf



Areas to improve:

- morbidity indicators

- inequalities in health status by gender and geographical regions

- lack of a systematic approach to cost-effectiveness assessment for

technologies, policies and management practices

Real-effectiveness medicine

Malmivaara A. Ann Med 2012

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Evidence-based

cardiovascular medicine

(RCT and meta-analysis)

Improving

outcomes

Real-effectiveness

cardiovascular medicine

(observational data; secondary

and primary; retrospective

and prospective)

DELIVER THE BENEFITS OF REAL WORLD DATA IN HEALTH OUTCOMES RESEARCH AND HEALTH RESOURCE MANAGEMENT

- Expensive

- Lengthy

- Not always feasible

- External validity

- Inherent causal

inference challenge

- Internal validity

challenge

- Debatable if the

results can guide

clinical practice

(adverse events vs

effectiveness claims)

Strengths and limitations of observational studies

-Identify outcomes

of interest (and

trends)

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Variables influencing prognosis

2. Severity of the event



ACS type



Cardiovascular risk factors



Previous medical history



Clinical presentation

3. Management

(effective, efficient, safe, timely)

Prognosis (outcomes)



In-hospital mortality

(total, specific cause,

associated with procedure)



Out of hospital mortality



Morbidity:

left systolic ventricular dysfunction

quality of life

costs

Challenges of data quality –

measuring quality of care in ACS

1. Health care resources

Process indicators

Outcome indicators

Structure indicators

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Administrative databases

Disease registries

Specific research projects

- Patient identification (diagnosis, basic demographics)

- Treatment data

- Outcome data

- Data on covariates

Electronic medical records (EMR)

+ Other routinely

collected health-care

data

Main sources of patient-level data in Europe

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Ferreira-Pinto LM, et al. BMJ Open2012;2:e000595 Rates per 100 000 inhabitants.

Crude mortality rate _{Standardized Mortality Rate} Residuals of the _{linear multiple regression.}

Ischemic Heart Disease (2000 to 2007)

Main sources of patient-level data in Portugal -

Hospital administrative

database – ACSS (Administração Central do Sistema de Saúde)

(8)

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

Time trends in coronary heart disease 1981-2012, by sex: age standardized (European

population) mortality rates and numbers of deaths, by Portuguese region.

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National Cardiology Data Collection Center (01/2002) (National or European)

Acute Coronary Syndromes (ProACS) Interventional Cardiology (PRIC)

Continuous

registries

Periodic

registries

Metabolic Syndrome Hypertension Tobacco Type 2 diabetes Dyslipidemia Heart failure Hypertrophic cardiomyopathy Myocarditis Takotsubo EUROASPIRE-IV

Percutaneous aortic valve (…)

Disease registries

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Hélder Dores et al. Cardiovasc Diagn Ther 2014;4(1):13-20

Compliance of pharmacological treatment for non-ST-elevation acute coronary

syndromes with contemporary guidelines: influence on outcomes

Main sources of patient-level data in Portugal -

Portuguese Registry on

Acute Coronary Syndromes (ProACS)

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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) 509–516

Main sources of patient-level data in Portugal

- specific research projects :

EURHOBOP study

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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

Romain André, (…), Carla Araújo, (…), Marta Pereira, Jaume Marrugat, Jean Ferrières. Heart 2014;0:1–7

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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

specific research projects:

EPIHeart study

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Death Event Mortality Risk factors Treatment

IMPACT model

C

ORONARY

HEART

DISEASE

TRENDS

IN

P

ORTUGAL

1980 2010

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Main sources of patient-level data in Portugal – IMPACT model

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-2500 -2000 -1500 -1000 -500 0 1995 2008 N u mb er o f d ea th s

Year

8% unexplained

Pereira M, Azevedo A et al Circ Cardiovasc Qual Outcomes. 2013;6:634-642

RISK FACTORS -42%

TREATMENTS -50%

Explaining the decline in coronary heart disease mortality in Portugal between 1995 and 2008

Main sources of patient-level data in Portugal – IMPACT model

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Record linkage

Patient

registry

Statistics

Sweden

Personal

identifying

number

Quality

registries

Electronic

medical

records

Disease

registry

Social

insurance

agency

http://www.healthdatanavigator.eu

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Epidemiologia da doença cardíaca. O contributo dos registos observacionais- conclusions

HOTLINE 1

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

Obrigada! Carla Araújo

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?);