Data Needs in Studies on Equity in Health and Access to Care: Ethical Considerations

Abstract

In order to study equity in health and access to care in an appropriate way, data are needed on an individual level and must include information about health, mortality, morbidity, utilization of care, age, sex, residential area, family situation and the social and economic circumstances of each individual. These data must be collected at several points of time during a life cycle. This is a demanding task requiring many resources and methodological and ethical considerations. The ethical and political trade-off is between our demand for knowledge and a fair distribution of resources in order to achieve equity in health and access to care and the need to administrate sensitive data without threatening personal integrity. In presenting results from Swedish studies, it is argued that the benefits of using registers for this kind of epidemiological research by far outweigh the risk of using registers.

A systematic review of reasons for and against asking patients about their socioeconomic contexts

“…[43, 82] More recently, gathering patients’ socioeconomic data has been said to constitute ‘part of good quality primary care data’, [80] to be vital for audit, [81, 85] especially audit of service uptake [26, 89] and impact, [31] as well as for ‘monitoring’ inequalities in healthcare delivery or access. [79, 83, 84, 86–88] For example, Moser and colleagues have suggested that ‘the routine collection within general practice of additional sociodemographic information would aid monitoring of inequalities in screening coverage and inform policies to correct them.’ [84] Similarly, preventative strategies, including childhood immunisations, might be better resourced and targeted because these activities ‘are known to reach those in poor socioeconomic circumstances less well’. [35, 92] Socioeconomic data could then be used to direct service provision toward ‘areas of highest need’.…”

“…Despite assertions above about the limited role of doctors in relation to inequalities, reducing socioeconomic inequalities in health is frequently cited as an important objective. [29, 57, 61, 63, 72, 83, 93, 94, 123, 125, 127] So too is reducing socio-economic inequalities in healthcare experience, [73] access and delivery, [42, 57, 86] screening programs [84] and prevention strategies [26]. Monitoring healthcare inequalities and implementing steps to reduce them has been described as a marker of healthcare ‘quality’ [83, 122, 124, 126] as well as an ‘ethical obligation’.…”

“…Monitoring healthcare inequalities and implementing steps to reduce them has been described as a marker of healthcare ‘quality’ [83, 122, 124, 126] as well as an ‘ethical obligation’. [86]…”

Population attitudes towards research use of health care registries: a population-based survey in Finland

“…Register-based health research is research based on health care registries or databases, some of which are originally not created for research use [ 2 ]. In Finland and other Nordic countries, numerous national health registries have been established with a legislative mandate for public health surveillance, health care monitoring and administrative purposes [ 3 – 5 ]. In this study, we assess common views regarding the justification for research use of health care registries with identifiable personal information, such as hospital discharge registers, cancer registries and medical birth registries.…”

“…In this study, we assess common views regarding the justification for research use of health care registries with identifiable personal information, such as hospital discharge registers, cancer registries and medical birth registries. Information in different registries can be linked with a unique identification number given to every citizen and permanent resident in the Nordic countries [ 3 , 5 – 7 ]. Our approach is based on the four principles of autonomy, justice, beneficence and non-maleficence [ 8 ].…”