Patients’ roles and rights in research - Involving underserved patient populations
With great interest we have read the article by Dr. Paul Wicks and colleagues. We recognize in particular the observed challenge to ensure diversity within collaborations so the interests of the well-educated white middle classes in rich countries do not dominate. We think this is of utmost importance.
It is still practice to exclude patients from underserved groups from scientific research, even as participants. For example, in many studies migrant patients are explicitly excluded because they do not speak the language of the researcher and cannot read a questionnaire or give informed consent. This results in a lack of insight into their potential needs, worries, problems, and wishes, perpetuating inequalities in health and access to care.
We think it is vital that patients (or patient representatives) from underserved groups are involved in all stages of the research process. Research methodology specifically aimed at meaningful engagement of service-users from underserved groups exists (such as participatory research and action methods). But also outside of such design the opportunities are many. Patients or representatives can help to think about which research questions are important to their communities, and help prioritize a research agenda. They can support researchers in formulating understandable and – if necessary – culturally appropriate information about the research, help to construct understandable and culturally appropriate questionnaires, topic lists for interviews or instructions for participatory research, and they can be involved as language concordant interviewers. Patients or representatives can also be included in the research team to support the analysis and the writing of the results, or be asked for advisory boards so that their experiences will be learned from and taken into account. In this, it is absolutely necessary to heed the input that is given, communicate findings and recognize the role played by these patients by offering compensation or discuss matters of shared authorship/ownership.
It is the experience of many researchers in the field of migrant health that indeed it involves effort to see after participation of or co-creation with patients from underserved groups. It requires taking into account linguistic and cultural factors, health literacy, educational level, and unfamiliarity with or lack of trust in scientific research. Researchers should be aware both of these factors that hinder patients from underserved groups to participate in research, and of their responsibility to overcome these.
In order to truly obtain equity in health care and reduce inequalities in health, we believe that researchers should learn to become responsive to diversity, i.e. they should learn to recognize and lower specific barriers for patients from underserved groups.
Competing interests: No competing interests