Research on Roma health and access to healthcare: state of the art and future challenges

Introduction

Health inequalities experienced by Roma people living in Europe presents a persisting challenge for health research and practice. Available literature on Roma and health agrees that: (1) Roma people suffer from poorer health and unhealthier living conditions compared to majority populations, (2) better data are needed to explain the Roma health gap and design better interventions to reduce this gap and (3) the poor health of Roma is closely linked to the social determinants of health. This editorial discusses the lessons to be learnt from recent research findings and outlines a number of challenges in exploring and addressing the various mechanisms that contribute to the health gap between Roma and majority populations.

The Roma health gap: understanding the underlying mechanisms

During recent years we have been witnessing two notable developments in research on Roma health. First, the focus has been gradually extended from communicable diseases, child health and genetic disorders that constituted the dominant topics a decade ago (Hajioff and McKee 2000; Zeman et al. 2003) to non-communicable diseases, chronic illnesses and associated risk factors (Mladovsky 2007; Masseria et al. 2010). Second, research has moved from predominantly descriptive studies on Roma health status towards more analytical studies exploring the factors that determine the health inequalities faced by Roma.

Recent evidence shows that Roma people experience specific health inequalities that cannot be traced back fully to socioeconomic factors (Masseria et al. 2010; Paulik et al. 2011; Kolarcik et al. 2009, 2010; Rosicova et al. 2011). The importance of assessing the explanatory power of socioeconomic status versus other factors has been highlighted in the context of exploring the pathways leading to ethnic differences in health (Reijneveld 2010).

Evidence demonstrates that Roma people face serious barriers in access to healthcare. Such barriers include lack of health insurance and other official documentation leading to exclusion of Roma from health services, geographic isolation from quality care, lack of information, language and communication obstacles, direct discrimination, degrading treatment and human rights violations in the provision of care (European Roma Rights Centre 2006; Council of Europe and EUMC 2003). Roma children are particularly affected by a range of barriers in obtaining health services (Rechel et al. 2009).

Better evidence for better interventions

There is a need to explore further how the specific barriers impact on the use of different types of care in Roma. Available studies suggest that Roma people overuse emergency care and underuse prevention services such as mandatory immunization for children (Fundación Secretariado Gitano 2009). Furthermore, the effects of health system reforms on access to healthcare for Roma require systematic and comparative research. A few studies are available from Bulgaria with focus on Roma children (Rechel et al. 2009) and Macedonia (Milevska-Kostova 2010). More research is needed to enable learning from cross-country experience.

Despite their crucial role as primary caregivers in Roma families and mediators between Roma communities and health systems (Open Society Institute 2005), Roma women are often overlooked in health-related research. Dual discrimination (ethnic and gender) against Roma women in the healthcare setting has been documented by researchers (Surdu and Surdu 2006) and NGOs working in Central and East-European countries to advance the health rights of Roma women (European Roma Rights Centre 2006). Systematic research and comparable data are needed to design tailored responses minimizing the effects of specific barriers met by Roma women in accessing to healthcare.

Several programs have been initiated at national and international levels to reduce the Roma health gap. Various measures have been launched under the Decade of Roma Inclusion 2005–2015 and action is also urged under the recently adopted EU Framework for National Roma Integration Strategies up to 2020 (European Commission 2011). Assessing the impact of programs implemented so far and providing evidence-based input for the development of further innovative actions is an upcoming challenge that requires the contribution of the public health research community.

Research on Roma health and access to healthcare: the way forward

Research on Roma and health is challenging. Such research must be methodologically sound, and findings must be compared to the majority populations. Obstacles to data collection and methodological challenges have been discussed repeatedly (Kósa and Ádány 2007, Hajioff and McKee 2000; Vokó et al. 2009). Often fragmented research is based on rather inadequate samples. Yet, experience has shown that the Roma communities across Europe present cultural differences that have health implications making it difficult to generalize fragmented research (Krumova and Ilieva 2008). Research of Roma health and access to healthcare should take into account such cultural differences.

Last but not least, it is important to pursue research agendas that reflect better the needs of the Roma minority itself. Involvement of Roma people in the design and implementation of such research agendas contribute to a better understanding of their needs. Cooperation with Roma civil society helps in bringing the insider’s perspective, reaching out to the most marginalized communities whose health needs require urgent attention but remain overlooked often.