Exploring the hidden demands for patients’ resources: How health researchers risk excluding patients from patient and public involvement in health research during recruitment

Abstract

Patient involvement in health research is widely recognized to promote effective collaboration between health researchers and patients in endeavors to develop healthcare systems. Policy documents and research strategies stress the benefits of collaborative health research with patients. However, patient recruitment depends not only on health researchers' decisions but also on other key factors: patients' competencies and the structural framework of the healthcare and academic sectors. This article is a modest attempt to explain challenges connected to recruitment, as health researchers seek to involve citizens in health research. Through interviews with nurses and doctors who conduct research, I describe how and why different patients are recruited into research in the Danish healthcare system. I apply Bourdieu's concepts of field, cultural capital, and habitus to analyze how health researchers assess patients' social competencies as part of the recruitment process. I conclude that health researchers' positions shape the competencies and knowledge that are considered legitimate and can operate as capital in this complex and dynamic arena. Therefore, forms of competencies that can function as capital are unequally distributed and recruitment risks excluding marginalized and disadvantaged groups from becoming involved. The study contributes to the literature on participatory practices and highlights the hidden social demands that are produced between the healthcare sector and academic sector by understanding the experiences of health researchers and how they value communicative skills and knowledge about the healthcare sector. The paper ends with suggestions for future directions.