OHDSI Portugal 

Background 

OHDSI and OMOP have played a crucial role in standardizing healthcare data and enabling the generation of reliable Real-World Evidence. Their adoption has improved patient care and facilitated medical research on an unprecedented scale, with a growing global community committed to advancing healthcare through collaborative data science.

Portugal is at the forefront of this movement, and the formalization of the National OHDSI Node lays the foundation for a thriving community of Portuguese healthcare data partners and SMEs. This community aims to foster interdisciplinary collaboration to discuss and address national healthcare challenges through real-world evidence. The Node will also serve as a gateway for international innovation, research partnerships, and knowledge sharing around OMOP-CDM.

Objectives 

The Portuguese National Node will actively pursue the following initiatives:

Establish a Portuguese Research Network based on OMOP:

1. Promote national and international research initiatives and observational studies
2. Contribute to a nationally standardized database
3. Promote a National Network involving the industry and academic institutions

Create and share deliverables:

1. Best practices for data-driven healthcare research
   • ETL processes
   • Data Quality
2. Vocabulary improvement and national/regional codes mapping (e.g. CHNM, ICD10, DRG)
3. Define common administrative procedures to streamline research collaborations (DPO approval, Ethics Committee approval, etc)

Find a Portuguese OHDSI multi-stakeholder interest group:

1. Involve local Portuguese stakeholders in the community, while actively working to expand the network of partners
2. Provide technical and operational support to potential new data partners
3. Promote regular meetings between the national and international communities to share knowledge and promote knowledge sharing
4. Encourage members’ active engagement in OHDSI/EHDEN activities at the European level
5. Coordinate and communicate with national policy institutions, regarding projects and expectations
6. Disseminate the value of OMOP-CDM more widely by organizing events and activities for academia, healthcare organizations, regulatory bodies, and industry partners

Governance Model 

The objective of the proposed governance model is to define the annual workplan and responsibilities of the Portuguese Data Node Members.

Leading Organisation(s)

CENTRO HOSPITALAR E UNIVERSITARIO DE COIMBRA EPE (CHUC)

Name of the Legal Representative: Alexandre José Lourenço Carvalho

Name of the contact person within the Organization: Cármen Nogueira This email address is being protected from spambots. You need JavaScript enabled to view it.) & Patrícia Couceiro (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Country of the Organization: Portugal

Address of the Organization: Av. de Bissaya, Praceta de Mota Pinto, Coimbra 3000-075, Portugal

VAT No. of the Organization: 510103448

Members

Data Partners 

SMEs 

 Publications

• Gavina C, Carvalho DS, Pardal M, Afonso-Silva M, Grangeia D, Dinis-Oliveira RJ, Araújo F, Taveira-Gomes T. Cardiovascular Risk Profile and Lipid Management in the Population-Based Cohort Study LATINO: 20 Years of Real-World Data. J Clin Med. 2022 Nov 18;11(22):6825. doi: 10.3390/jcm11226825. PMID: 36431309; PMCID: PMC9692709.
  
  
• Norhammar A, Bodegard J, Eriksson JW, Haller H, Linssen GCM, Banerjee A, Karasik A, Mamouris P, Tangri N, Taveira-Gomes T, Maggioni AP, Botana M, Thuresson M, Okami S, Yajima T, Kadowaki T, Birkeland KI; CaReMe Cardiorenal Investigators. Cost of healthcare utilization associated with incident cardiovascular and renal disease in individuals with type 2 diabetes: A multinational,  observational  study  across  12  countries.  Diabetes  Obes  Metab.  2022
  
  
• Jul;24(7):1277-1287. doi: 10.1111/dom.14698. Epub 2022 Apr 19. PMID: 35322567; PMCID: PMC9321691.
  
  
• Gavina C, Carvalho DS, Valente F, Bernardo F, Dinis-Oliveira RJ, Santos-Araújo C, Taveira- Gomes T. 20 Years of Real-World Data to Estimate the Prevalence of Heart Failure and Its Subtypes in an Unselected Population of Integrated Care Units. Journal of Cardiovascular Development and Disease. 2022; 9(5):149. https://doi.org/10.3390/jcdd9050149
  
  
• Carla Santos-Araújo, Luís Mendonça, Daniel Seabra Carvalho, Filipa Bernardo, Marisa Pardal, João Couceiro, Hugo Martinho, Cristina Gavina, Tiago Taveira-Gomes, Ricardo Jorge Dinis- Oliveira, Twenty years of real-world data to estimate chronic kidney disease prevalence and staging in an unselected population, Clinical Kidney Journal, Volume 16, Issue 1, January 2023, Pages 111–124, https://doi.org/10.1093/ckj/sfac206
  
  
• Clemente-Teixeira M, Magalhães T, Barrocas J, Dinis-Oliveira RJ, Taveira-Gomes T. Health Outcomes in Women Victims of Intimate Partner Violence: A 20-Year Real-World Study. Int J Environ Res Public Health. 2022;19(24):17035. Published 2022 Dec 19. doi:10.3390/ijerph192417035
  
  
• J Rheumatol. 2020 May 1;47(5):690-700. doi: 10.3899/jrheum.181272. Epub 2019 Aug 1. Real- World Long-Term Effectiveness of Tumor Necrosis Factor Inhibitors in Psoriatic Arthritis Patients from the Rheumatic Diseases Portuguese Register. Vieira-Sousa E, Eusébio M, Ávila-Ribeiro P, Khmelinskii N, Cruz-Machado R, Rocha TM, Bernardes M, Santos-Faria D, Silva JL, Santos H, Miguel C, Carvalho P, Costa T, Duarte AC, Meirinhos T, Nero P, Fonseca JE, Santos MJ.
  
  
• Acta Reumatol Port. 2018 Jan-Mar;43(1):8-9. Reuma.pt - structure and innovation. Santos MJ, Canas da Silva J.