During my presentation at an international diabetes conference last year, I was asked about my reasons for using “consumer” in my research and, as a person with diabetes, subsequently labelling myself as a consumer. The answer isn’t as simple as I’d like it to be, but what it does do is bring up the important conversation of language in diabetes research.
Firstly, why is language important in health research, especially in the realm of diabetes? Language is the main vehicle for sharing knowledge and understanding, and is a powerful tool regarding attitudes, behaviours and perceptions; it directly influences health outcomes (Dickinson et al., 2017). Diabetes has a history of being associated with negativity by media in particular – causing people with diabetes to feel judged, stigmatised, blamed and shamed through the words used (Ventura, 2017). The hugely successful ‘language matters’ campaign from Diabetes Australia has highlighted the importance of empowering language in the context of people with diabetes. In the revised position statement in 2021, Diabetes Australia provided a guide for people working with people with diabetes across healthcare, media, academia and the community. The key message from this article was that language needs to support all people affected by diabetes in a positive, constructive way – with language that shows care and a removal of bias (Speight et al., 2021).
I am a person with diabetes who also has a research background in social science and social marketing. Within the realm of social marketing, consumer research and consumer engagement is the more-recognised and accepted terminology that my research area falls under. For me, the term “consumer” is one I refer to and use in the context of social marketing, in that it encompasses individuals with shared knowledge and information on an area – it is knowledge, experience, and services they consume. I appreciate the definition of consumer within a social marketing context, where it is associated with the culture they exist in and the relationship between them and the goods and services they user or consume, as well as the relationships associated with them. The theory of a knowledge exchange between consumers, those that offer the services, and other consumers promotes equity in healthcare; it directly connects with addressing the prevention of health inequalities in the social determinant of health (Australian Medical Association, 2007). Of course, there is the argument on “consumer” in American terms being viewed as a term with numeric or financial implications. However, the research I participate in clearly does not have a financial focus, nor is aligned with a financial definition of this term. That being said, I am aware that for a global audience, this term may cause confusion when used, therefore if I am to use “consumer” moving forward, clarification on the context, as well as its connection to health benefit and social science context is essential.
Decades have passed since studies focusing on people with diabetes and lived experience were formally acknowledged in clinical academic spaces and writing. Originally, it can be assumed that the term “participants” or “patients” was used in order to match the clinical and medically-aligned language of research at the time. Speight et al discuss how “patient” labels the person in a passive role, who cannot get assistance without medical intervention and is merely tolerating their situation, whilst “consumer” is more positive and shows involvement and choice, may be unhelpful due to people with diabetes not always experiencing real choice (Speight et al., 2021).
However, the longer lived experience is central to research areas, those that are involved have complete authority to change the terminology used, for the better. Dickingson et al have summarized wonderfully what should be best practice in the use of language in diabetes care, education and research methods: it should be non-judgemental, free from stigma, inclusive, person-centred and fosters collaboration (Dickinson et al., 2017). Here is where the diabetes community and its associated stakeholders has continued to challenge research and its language for the better. Harris et al discuss that research is strengthened through partnerships that are committed to collaboration, with people mobilized in co-design and co-delivery of interventions (Harris et al., 2019). Both provide clear examples, regardless of terminology used, of language that is engaging, empowering and has people with diabetes as the clear focus.
That being said, whilst diabetes communities have ongoing discussion about preference of the terms they want used to define their health (diabetic, or person with diabetes, for example), the most important part of this is that it is the decision of the person with the condition as to how they want to be defined. In this case, this can also be applied to the terminology used for people with diabetes who are involved in research. It doesn’t matter what term is used – as long as it is the preferred term of the people involved in the study, and that the lived experiences are given the acknowledgement they deserve in research (which, in my opinion, is a seat at the table that aligns equally with clinicians and researchers!) Even since I started my research journey, the term “community” is now emerging as the preferred language for people with diabetes involved in research, because it not only makes reference to the ever-growing and successful support network of the online diabetes community (Litchman et al., 2019), but it also is empowering language and acknowledges the collective efforts of people with diabetes.
Moving forward, as a middle-(wo)man between the diabetes community, healthcare professionals, academia and my own lived experience, I must ensure that regardless of the terminology I use, the people engaged in my research are the focus of my work, and whichever preference they like for language is acknowledged and used. Whilst my research is broadly known as “consumer research”, and whilst continuity of terminology is important, future papers of mine will ensure that “community” is the recommended language preference used to define individuals in my research, to best represent and acknowledge the broader request of my fellow people with diabetes. I look forward to seeing how language in research continues to develop and be community-led and community-created.
References:
Australian Centre for Behavioural Research in Diabetes, Adriana Ventura, The language movement in diabetes, 23 October 2017. Retrieved from https://acbrd.org.au/2017/10/23/the-language-movement-in-diabetes/
Australian Medical Association, Social Determinant of Health and the Prevention of health Inequities – 2007, 5 March 2007. Retrieved from https://www.ama.com.au/position-statement/social-determinants-health-and-prevention-health-inequities-2007#:~:text=Upstream%20determinants%20are%20those%20that,and%20include%20one’s%20genetics1
Dickinson J, Guzman S, Maryniuk M, O’Brian C, Kadohiro J, Jackson R, D’Hondt N, Montgomery B, Close K, Funnell M; The Use of Language in Diabetes Care and Education. Diabetes Care 1 December 2017; 40 (12): 1790–1799. https://doi.org/10.2337/dci17-0041
Harris, J, Haltbakk, J, Dunning, T, et al. How patient and community involvement in diabetes research influences health outcomes: A realist review. Health Expect. 2019; 22: 907– 920. https://doi.org/10.1111/hex.12935
Litchman, M. L., Snider, C., Edelman, L. S., Wawrzynski, S. E., & Gee, P. M. (2018). Diabetes Online Community User Perceptions of Successful Aging With Diabetes: Analysis of a #DSMA Tweet Chat. JMIR aging, 1(1), e10176. https://doi.org/10.2196/10176
Speight J, Skinner T C, Dunning T, Black T, Kilov G, Lee C, Scibilia R, and Johnson G. “Our Language Matters: Improving Communication with and About People with Diabetes. A Position Statement by Diabetes Australia.” Diabetes research and clinical practice 173 (2021): 108655–108655. https://doi.org/10.1016/j.diabres.2021.108655