Migration and perinatal health surveillance: An international Delphi survey

1. Migration and perinatal health surveillance:An international Delphi survey Anita Gagnon, Jennifer Zeitlin, Meg Zimbeck for the ROAM collaboration & in conjunction with EURO-PERISTAT

2. Sophie Alexander, Université libre de Bruxelles (Belgium) Béatrice Blondel, INSERM (France) Simone Buitendijk, TNO Institute – Prevention and Care (Netherlands) Marie Desmeules, Public Health Agency of Canada Dominico DiLallo, Agency for Public Health – Rome (Italy) Anita Gagnon (co-leader), McGill University/MUHC, (Canada) Mika Gissler, STAKES (Finland) Richard Glazier, Inst. For Clinical Evaluative Sciences (Canada) Maureen Heaman, University of Manitoba (Canada) Dineke Korfker, TNO Institute – Prevention and Care (Netherlands) Alison Macfarlane, City University of London (UK) Edward Ng, Statistics Canada Carolyn Roth, Keele University (UK) Rhonda Small (co-leader), LaTrobe University (Australia) Donna Stewart, Univ. Hlth Netwk of Toronto/U of T (Canada) Babill Stray-Pederson, University of Oslo (Norway) Marcelo Urquia, Inst. For Clinical Evaluative Sciences (Canada) Siri Vangen, Dept Ob/Gyn of The National Hospital of Norway Jennifer Zeitlin, INSERM and EURO-PERISTAT (France) Meg Zimbeck, INSERM and EURO-PERISTAT (France) ROAM = Reproductive Outcomes And Migration: An international research collaboration:

3. Funding acknowledgements • Canadian Institutes of Health Research (CIHR) - International Opportunities Program • Start-up support: Immigration et métropoles (Center of Excellence in Immigration Studies - Montreal) • Career support to AJG: Le fonds de la recherche en santé du Québec (FRSQ) • Visiting Scientist Scholarship to AJG: l'Institut national de la santé et de la recherche médicale (INSERM, France)

4. Background • Perinatal health of migrant women is a priority for many governments • No consensus exists on indicators for monitoring migration and perinatal health • ROAM began its work by undertaking an extensive review of the literature: • One purpose was to inventory migrant terms and definitions used to study this issue • This inventory formed the basis from which the expertise of researchers specializing in this topic was sought to identify the most appropriate indicators to be used through a Delphi process

5. Objectives for this project • To achieve consensus on migration indicators to be used internationally for: • Perinatal health surveillance indicator sets & • Routine population-based perinatal surveys • To obtain suggestions on migration indicators and definitions to be used for research projects.

6. Methods:Modified Delphi process • A formalized consensus method: • A panel of people respond to successive series of questionnaires with the aim of achieving a consensus on key principles/proposals • Participants rank items by priority or importance; can give comments • Participants: • 38 perinatal clinicians, epidemiologists, experts in health information systems from EURO-PERISTAT, ROAM, and others (recommended by ROAM) • 22 countries including Europe, Scandinavia, Australia, Canada • Questionnaires: • Derived from the ROAM systematic review of literature • Each participant completed between 1 and 3 questionnaires (“rounds” of questionnaires) • Summary results of each preceding round of questionnaires were provided in conjunction with a new set of questions

7. Results

8. Importance of indicator • Concepts considered important/essential by >50%: • Country of birth • The time that the migrant has been in the country (measured by: recent immigrant, length of time in country, age at migration and year of migration) • Immigration status (undocumented, irregular migrant, immigration status, asylum seeker, refugee) • Language fluency • Ethnicity

9. Feasibility of indicator • Generally low • Country of birth had the highest rating • 65% thought this indicator could be collected in data registries with no or minor modifications • 69% in routine population surveys • In general, feasibility was considered to be higher in routine population surveys. • Poor feasibility for: undocumented/ irregular status, asylum-seeker/refugee status, ethnicity, receiving country language fluency

10. Consensus to reduce the migration indicator list • Agreement with the reduced list of indicators to consider = 79% • Country of birth • Recent immigrant • Immigration status • Language • Ethnicity

11. Recommendations:Core indicator - routine data collection

12. Recommendations:Recommended indicator - routine data collection

13. Recommendations:Recommended indicator - specific studies or added to routine data collection

14. Recommendations:Recommended indicator - specific studies or added to routine data collection (cont’d)

15. Additional info to be provided when issuing common recommendations: Ethics • Collecting and presenting data on migration requires special attention to ethics and the way that these data are used and interpreted in my country: Yes = 70% No = 18% No response = 12% • Comments: • Useful for healthcare providers not to know about legal status of patients – can’t refuse them treatment • Several privacy laws apply • Info may be censored with small sample sizes • Using broader categories to report results may reduce “singling out” any particular group

16. Additional info to be provided when issuing common recommendations: Ethics (cont’d) • Comments (cont’d): • Use of data on migrant groups is always a worry even when we are clear on our intentions regarding optimizing care… • We could be helping to create negative social stereotypes • Precautions to be taken: • Try to get government buy-in • Consult those upholding privacy regulations • Could ensure measuring aspects of health thought to be positive in migrants at the same time as measuring those that are negative • Be aware of the discourse… • Inform women of their privacy rights • Create institutions with legal mandates to collect this information • Include migrants in data interpretation and reporting

17. Conclusions • Our group recommends: • Essential indicator to be used in international comparisons of migration and perinatal health be migrant country of birth • Perinatal mortality rates by migrant country of birth be presented for each source region (data not presented) • Time since arrival in receiving country be added to routine data collection • Studies be undertaken to complement routine data collection on: • immigration status • receiving country language fluency • ethnic origin as defined by maternal parents’ place of birth • As soon as available, present several perinatal indicators with the recommended migration indicators

18. Thank you! anita.gagnon@mcgill.ca