How to Improve Access to Data from Epidemic Surveillance and Electronic Health Records in order to Advance Research in Portugal

Authors

  • Vasco Ricoca Peixoto Centro de Investigação em Saúde Pública. Escola Nacional de Saúde Pública. Universidade NOVA de Lisboa. Lisboa. Comprehensive Health Research Centre. Universidade NOVA de Lisboa. Lisboa.
  • Nina de Sousa Santos Instituto de Bioética. Universidade Católica Portuguesa. Porto.
  • Tiago L. Souto Unidade de Saúde Pública. Agrupamento de Centros de Saúde de Sintra. Administração Regional de Saúde de Lisboa e Vale do Tejo. Sintra.
  • Margarida Gil Conde Comissão de Ética para a Saúde. Secção de Investigação. Administração Regional de Saúde de Lisboa e Vale do Tejo. Lisboa. Unidade de Saúde Familiar Jardins da Encarnação. Agrupamento de Centros de Saúde de Lisboa Central. Administração Regional de Saúde de Lisboa e Vale do Tejo. Lisboa.
  • Bruno Heleno Clínica Universitária de Medicina Geral e Familiar. Faculdade de Medicina. Universidade de Lisboa. Lisboa.
  • João V. Cordeiro Centro de Investigação em Saúde Pública. Escola Nacional de Saúde Pública. Universidade NOVA de Lisboa. Lisboa. Comprehensive Health Research Centre. Universidade NOVA de Lisboa. Lisboa. Centro Interdisciplinar de Ciências Sociais. Universidade NOVA de Lisboa. Lisboa.
  • Pedro Aguiar Centro de Investigação em Saúde Pública. Escola Nacional de Saúde Pública. Universidade NOVA de Lisboa. Lisboa. Comprehensive Health Research Centre. Universidade NOVA de Lisboa. Lisboa.
  • Alexandre Abrantes Centro de Investigação em Saúde Pública. Escola Nacional de Saúde Pública. Universidade NOVA de Lisboa. Lisboa. Comprehensive Health Research Centre. Universidade NOVA de Lisboa. Lisboa.

DOI:

https://doi.org/10.20344/amp.18381

Keywords:

Data Collection, Delivery of Health Care, Epidemiologic Research Design, Health Services Research, Information Storage and Retrieval, Medical Records Systems, Computerized, Portugal, Public Health Systems Research, Routinely Collected Health Data

Abstract

N/a.

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References

Guimarães R, Dinis-Oliveira RJ, Pereira A, Rodrigues P, Santos A. Reutilization of clinical data for research: the footprint scientific model of the hospital center of São João. Acta Med Port. 2017;30:159-62. DOI: https://doi.org/10.20344/amp.8592

Meneses-Oliveira C. Use of electronic medical records for research: new ethical challenges and possible solutions. Acta Med Port. 2019;32:332-4. DOI: https://doi.org/10.20344/amp.11280

Hoffmann W, Bobrowski C, Fendrich K. Sekundärdatenanalyse in der Versorgungsepidemiologie: Potenzial und Limitationen. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2008;51:1193-201. DOI: https://doi.org/10.1007/s00103-008-0654-y

Organisation for Economic Co-operation and Development. Enhancing access to research data during crises: lessons learned from the COVID-19 pandemic. OECD;2021. [consultado 2021 Jun 18]. Disponível em: https://www.oecd.org/sti/inno/enhance-access-research-dataduring-crises.htm.

Obel C, Olsen J, Jensen UJ. Use of existing health data in epidemiologic research–issues of informed consent under normal circumstances and at a time of health crises. Clin Oncol Res. 2020;2020:1-4. DOI: https://doi.org/10.31487/j.COR.2020.06.09

European Centre for Disease Prevention and Control. Data quality monitoring and surveillance system evaluation – A handbook of methods and applications. Stockholm: ECDC; 2014. [consultado 2021 Jun 18]. Disponível em: https://www.ecdc.europa.eu/en/publications-data/data-quality-monitoring-and-surveillance-system-evaluation-handbookmethods-and.

European Centre for Disease Prevention and Control. Assessment of electronic health records for infectious disease surveillance: final mapping exercise report. Stockholm: ECDC; 2021. [consultado 2021 Jul 04]. Disponível em: https://www.ecdc.europa.eu/en/publications-data/assessment-electronic-health-records-infectious-disease-surveillance.

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World Health Organization. Health Data as a global public good – a call for Health Data Governance 30 September. [consultado 2022 Abr 06]. Disponível em: https://www.who.int/news-room/articles-detail/healthdata-as-a-global-public-good-a-call-for-health-data-governance-30-september.

Parlamento Europeu. Regulamento (UE) 2016/679 do Parlamento Europeu e do Conselho, de 27 de abril de 2016, relativo à proteção das pessoas singulares no que diz respeito ao tratamento de dados pessoais e à livre circulação desses dados e que revoga a Diretiva 95/46/CE (Regulamento Geral sobre a Proteção de Dados) (Texto relevante para efeitos do EEE). 2016. [consultado 2019 Out 16]. Disponível em: https://eur-lex.europa.eu/legal-content/PT/TXT/?uri=CELEX:32016R0679.

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Published

2022-08-17

How to Cite

1.
Ricoca Peixoto V, de Sousa Santos N, L. Souto T, Gil Conde M, Heleno B, V. Cordeiro J, Aguiar P, Abrantes A. How to Improve Access to Data from Epidemic Surveillance and Electronic Health Records in order to Advance Research in Portugal. Acta Med Port [Internet]. 2022 Aug. 17 [cited 2024 Dec. 18];35(11):786-8. Available from: https://actamedicaportuguesa.com/revista/index.php/amp/article/view/18381

Issue

Vol. 35 No. 11 (2022): November

Section

Perspective

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