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Table 1 Barriers related to participation, engagement and involvement of ethnic groups in health research

From: “We are not hard to reach, but we may find it hard to trust” …. Involving and engaging ‘seldom listened to’ community voices in clinical translational health research: a social innovation approach

Barriers related to research culture
 Attitudinal barriers Researchers (along with the rest of society) may have unconscious bias or preconceptions (stereotypes or cultural myths) about whether patients from certain groups are interested in participating in a study or in research in general (Practice observation)
 Low awareness of the importance of inclusive research and diverse recruitment The historical and conceptual understanding of race, ethnicity and culture can make the recruitment of people from ethnic minority backgrounds appear more problematic to researchers (Practice observation)
Study design Study design (including development of inclusion and exclusion criteria) may structurally exclude BAME patients and those with lower socioeconomic status, as they tend to have poorer health in general. (Practice observation)
Overly complex, jargon filled, study information and consent forms can exclude potential participants from different backgrounds even when their command of English is good.
 Language, communication and cultural barriers Often there is no guidance or resources for researchers to help them include patients who do not speak English as a first language, meaning these patients are excluded from a study. Ethics committee requirements to translate all written material in different languages can have little positive impact when many community languages are not generally used in a written form, or low levels of health literacy are not accounted for in the material. (Practice observation)
 Increased cost of studies The perception that the addition of extra variables such as ethnic diversity of participants would increase the cost and duration of research studies, through the requirement of more sub-group analyses and increased recruitment costs such as translators (Practice observation)
Barriers related to healthcare
 Structural health inequalities and racism So-called ‘underserved’ populations can expect higher incidence rates of conditions (eg. Cancer) because of structural exclusion and unmet need (eg. Inadequate access to prevention and screening perhaps due to poor information on prevention and / or screening appointments being held at times and in locations which are inaccessible for particular groups, later diagnosis, exclusion criteria/recruitment bias in research studies) or and/or unmet need through exclusive research priorities and design.
 Power dynamics Power dynamics inherent in social and health inequalities acknowledge that the structure and models for involvement (e.g. use of meeting rooms, rigid agendas, chairing of meetings) can be exclusive or culturally imperialist, ie. Where the dominant research culture significantly affects how research or public involvement is conducted. Is this conducive to the development of trust, valued involvement and creation of equal knowledge spaces? [18,19,20]
Barriers related to society and heritage
 Mistrust of anchor institutions and/or healthcare providers Often cited as the most common barrier to the participation of ethnic groups in clinical trials. Poor previous experiences and low satisfaction in a healthcare or other institutional can lead to people from ethnic and lower socio-economic groups in research feeling less confident about being treated with dignity and respect in research Distrust around sharing or misuse of personal information and data protection issues is also higher in ethnic groups (cf. [4])
Barriers within communities
 Lack of understanding of the research process In disadvantaged and marginalised communities, this can lead to a rejection to an invitation to participate. (Practice observation)
 Socioeconomic status Decisions by patients to participate may be driven in part by socio-economic status. Loss of income (actual or perceived) or costs incurred by participation, engagement and/or involvement in research (due to increased hospital visits, for example) may deter participation. (Practice observation)
 Flexibility Lack of flexibility around timing can prevent many patients and carers from participation, engagement and/or involvement. Common reasons include childcare, carer responsibilities and employment in sectors that wouldn’t approve extra time off to attend participation or involvement activities. (Practice observation)
 Stigma Different cultural and or religious beliefs of patients may impact upon their perceptions of health, research and participation in a clinical trial. (Practice observation)