https://orcid.org/0000-0003-0527-5217
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Abstract
The knowledge about substance use and treatment among migrants and ethnic minorities is scarce in the European Union. In light of recommendations to optimize data gathering and processing, the aim of this paper is to identify which migration and ethnicity related indicators are used in the EU-28 treatment demand indicator (TDI) registries. We present results of a systematic TDI report analysis and an online survey. Because of the importance of the principles of subsidiarity and proportionality in the European Union, we base the discussion of the results on survey responses of experts in the member states. We subsequently discuss considerations related to 1) optimizing migration and ethnicity related indicators in TDI and other drug related indicator protocols, 2) using unique identifiers, and 3) enhancing purpose specification and informed consent. These suggestions are formulated against the backdrop of the General Data Protection Regulation (GDPR) as well as the growing need to ground comprehensive drug treatment policies in tiered modelling and multi-indicator analysis.
Acknowledgments
Many individuals have contributed to this work and helped in conceptualizing the discussed issues, although they may not agree with all the views, interpretations and conclusions in this paper. Lies Gremeaux and Jerome Antoine (Sciensano, Belgian National Focal Point) provided very useful input and comments to the early and advanced versions of this paper and were key in disseminating the survey to National Reitox Focal Points. Hannah Vermaut (UNIA, Belgian Equality Body) provided comments on an early version of this paper based on her insight and expertise.
Declaration of interest statement
The views, interpretations and conclusions set out in this publication are those of the author and cannot be considered to reflect the views of the Belgian Science Policy Office. The answers of staff members of the National Focal Points do not necessarily reflect the official position on the discussed topics of these respective National Reitox Focal Points.
Notes
1 The term Roma encompasses diverse groups, including Roma, Gypsies, Travellers, Manouches, Ashkali, Sinti, and Boyash. Roma is the term commonly used in EU policy documents and discussions.
2 The first actor who defined a common protocol for collecting data on people entering drug treatment was the Pompidou Group (PG), who coordinated studies at city level (in Dublin and London in 1991) and a developmental project in 11 cities and the creation of a European expert group which met several times to discuss and agree on the methodological guidelines. (TDI protocol 3.0)
3 For detailed country information we refer to the full country reports (Farkas, Citation2017c).
4 (Farkas, Citation2017b, pp. 12–21) rated equality data gathering by means of a fixed set of indicators as:
- regulated (in sensitive data exemptions allowed as per Directive 95/46/EC and in anti-discrimination legislation and the existence of equality data legislation or guidance);
- valid (consultation of populations, coverage of groups, use of self-definition);
- reliable (nationally comparable, regular data collection, number of actors collecting data, controls and disaggregation);
- comprehensive (presence of population estimation and data on employment, education, housing, health, poverty/social exclusion, crime victimization, discrimination complaints, discrimination cases, outcomes of discrimination cases), use of equality data to promote equality in practice (official national monitors (discrimination, equality, integration), official local monitors (discrimination, equality, integration, proof in discrimination cases, use of remedies & sanctions, planning for equality or positive actions, law- and policy-making, evaluation of anti-discrimination legislation).
5 A French constitutional decision did indeed forbid the inclusion of variables on race and religion in administrative files but it did not rule on the de facto inclusion of geographic origin or previous citizenship (available in public statistics) and language related indicators. Farkas concludes that “It is conceivable that as a result of the Constitutional Council decision, French judicial interpretation is not compliant with the EU Data Protection Directive concerning the collection of ethnic data, inasmuch as it denies the right to individuals to consent to the processing of data concerning their ethnic origin while providing a mechanism that generates such data without their explicit consent” (Farkas, Citation2017a, p. 14).
6 Austria, Belgium, Bulgaria, Croatia, Republic of Cyprus, Czechia, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, UK (England and Wales, Northern Ireland, Scotland).
7 The internal document Guide for reporting to EMCDDA 2015 states that the chapter on ‘social correlates and social reintegration’ – included in all 2014 reports – will no longer be separately included, but integrated in the treatment chapter in the reporting system as from 2015.
8 The reporting guidelines of EMCDDA are re-discussed year by year.
9 All 2014 reports are based on 2013 data. Subsequently, if no year is mentioned in the results section, data refer to 2013.
10 The full questionnaire is available upon request to the author. The relevant wording of the questions is reported in the results section.
11 Note that MEM that were only reported about in drug-related crime or judicial statistics are not accounted for in this section.
12 UK, Poland, Denmark, Greece, Portugal, France, Finland, Malta.
13 In the results section I only refer to pages in the 28 national reports. These reports are fully available and were consulted via http://www.emcdda.europa.eu/publications-database_en?f%25255B0%25255D=field_series_type%253Aname%3ANational%20reports&f%5B0%5D=field_pub_date%3A2014
14 Lithuania, Slovakia, Slovenia, Czechia, Romania, Bulgaria
15 p. 156 The term, “People with migration background” includes people who came to Germany after 1950 and foreign nationals born in Germany (including refugees), late repatriates and naturalised persons as well as their children (Ruf & Walter-Hamann 2014).”
16 Greece, Denmark, Bulgaria, Cyprus, Germany, Estonia, Slovakia, Latvia, Lithuania, Luxemburg, Romania, Portugal, Ireland, Malta.
17 Greece, Denmark, Bulgaria, Cyprus, Germany, Estonia, Slovakia, Latvia, Lithuania, Luxembourg, Romania, Portugal, Ireland, Malta.
18 Austria, Czechia, Lithuania, Netherlands, Poland, Slovenia, Sweden, Croatia, Spain.
19 Belgium, Bulgaria, Cyprus, Czechia, Finland, France, Greece, Ireland, Italy, Latvia, Lithuania, Luxemburg, Poland, Portugal, Slovakia, Spain, Sweden, The Netherlands, United Kingdom (England). No data available on Austria, Croatia, Denmark, Estonia, Germany, Ireland, Hungary, Malta and Romania.
20 “Birthplace, European/not-European choice, Nationality at birth, Nationality, Language related question, Birthplace/nationality of mother, Birthplace/nationality of grandmother, Birthplace/nationality of father Birthplace/nationality of grandfather, Ethnicity, I don't know, None, Other (Please specify).”
21 Based on the question “Can you specify how migration/nationality/ethnicity related indicators were mainly registered in the 2017 national TDI protocol?”
22 Based on the question “Please name the (types of) services of which (you think) registered nationality/migration/ethnicity related in 2017” and “Are clients registered with a national identification number in drug treatment in your country?”
23 In the Netherlands for instance some argue that while ethnicity is included in the health domain to combat disparities, it might be intertwined with and contribute to these very societal dynamics which produce health inequalities. This was similarly argued for by Epstein (2007) in stating that the political context in the US shaped scientific practices related to ethnicity and race in health, as exemplified in US based epidemiological studies (De Kock et al., Citation2017).
24 More information on TDI database linkage in other domains can be found in Van Baelen et al. (Citation2018).
25 GDPR (31) “The processing of special categories of personal data may be necessary for reasons of public interest in the areas of public health without consent of the data subject. Such processing should be subject to suitable and specific measures so as to protect the rights and freedoms of natural persons. In that context, ‘public health’ should be interpreted as defined in Regulation (EC) No 1338/2008 of the European Parliament and of the Council (1), namely all elements related to health, namely health status, including morbidity and disability, the determinants having an effect on that health status, healthcare needs, resources allocated to healthcare, the provision of, and universal access to, healthcare as well as healthcare expenditure and financing, and the causes of mortality. Such processing of data concerning health for reasons of public interest should not result in personal data being processed for other purposes.”