ABSTRACT
This chapter is based on a ‘think piece’ originally written for the Empowerment subgroup of INVOLVE (formerly Consumers in NHS Research). The paper then became a consultation document and was published on the INVOLVE website for the purpose of stimulating thought and discussion on the issues surrounding the involve ment of vulnerable and frequently excluded people in research and development. Vulnerable and marginalized people have something important to offer through their involvement, not as research participants, but as active partners, collaborators and leaders in research. Without their active input, research that affects them will risk being irrelevant and perhaps even flawed. The Research Governance Framework says:
Research and those pursuing it should respect the diversity of human culture and conditions and take full account or ethnicity, gender, disability, age and sexual orientation in its design, undertaking and reporting. Researchers should take account of the multi-cultural nature of society.
Research [should be] pursued with the active involvement of service users and carers including where appropriate, those from hard to reach groups such as the homeless.
(Department of Health 2001: 15) ‘Vulnerability’ and ‘marginalization’ can mean different things to each of us, but the range of people who are often described as ‘vulnerable’ or ‘marginalized’ by service providers is large. It may be that some of these people would not describe themselves as vulnerable or marginalized at all. Whether or not you are perceived, or perceive yourself, as vulnerable or marginalized will probably depend on where you are standing at the time, and in relation to who, or what. From whose context are people or services being evaluated? What assumptions arise from the culture of the group, or subgroup, we belong to? For example, travellers may see the National Health Service (NHS) as hard to reach and marginal to their culture. Any social or organizational group is a single context and can be seen to have its own culture.