Tracking the rise of the “expert patient” in evolving paradigms of HIV care

Abstract

In the context of rolling out antiretroviral treatment programmes in resource-constrained settings, “expert patients” are hailed as an important step towards greater involvement of people living with HIV (PLHIV) in HIV care, and in addressing the human resources crisis. The rise of the “expert patient” in HIV care partly echoes the move towards greater patient agency and self-management that informs health services delivery in industrialised countries. However, the “expert patient” also represents a particular moment in the trajectory of PLHIVs' quest for greater access to treatment and health care. In this paper, we examine the unique evolution and ‘instrumentalisation’ of PLHIV in public health in relation to shifts in the epidemiology, interventions and socio-political response related to HIV since the 1980s. Synthesised broadly as “risk-based”, “empowerment”, “structural” and “activist” approaches, four key paradigms are identified that attribute different levels of citizenship for PLHIV, that is the motivation, agency and responsibility to act not only on their own interests, but also on behalf of collective interests in HIV prevention and care. We problematise the concept of the patient-citizen by drawing attention to the context-specificity of such notions as patient identity, capacity and rights as well as the structural realities of access to treatment, and broader engagement with the health system. We conclude by offering some thoughts on the applicability of ‘expert patient’ approaches across a broad range of settings.

Keywords:

• HIV/AIDS
• antiretroviral therapy
• therapeutic citizenship
• health activism
• expert patient

Acknowledgements

We would like to thank the organisers of the conference Expanding ART provision in resource limited settings: social dynamics and policy challenges (University of East Anglia and HEARD) for giving us the opportunity to develop this paper. Special thanks are extended to A.A. Kielmann for his constructive comments on the structure and argument of the paper.

Notes

1. The UK Department of Health initiative launched in 2001 envisioned a category of expert patients who “…understand that the quality of their lives is primarily up to them; believe they can exert significant control over their own lives; are determined to live a healthy life despite their chronic condition…” (UK Department of Health, 2001.

2. Referred here as a transformative individual or collective state influenced both by social and biological forces.

3. Extract from an interview conducted with an expert patient by HEALTH-SWAZILAND: “Role Models in the Community”.