Type 1 diabetes (T1D) doesn’t take a break; it is there 24 hours a day, 7 days a week, 365 days a year. People with T1D are therefore particularly well placed to understand the real physical, mental and social impacts of the disease and its associated treatments.
However, their voice is barely valued in the very field that aims to transform and improve care, namely research. How can it be possible to achieve that goal without involving the people who benefit from it, who know the overall impact of T1D and the needs that arise from it?
To support this need to rethink research, we recently wrote an editorial that was published in a scientific journal. Here are the main points:
The limits of patient partner initiatives
Including people living with T1D in research as patient partners is a fairly new concept that started in response to pressure from patient advocacy groups. This innovative initiative is supported by the Canadian government and provides an opportunity for people with T1D who wish to be involved to play a direct and determining role in research.
This is why the BETTER project includes patient partners. Their input is essential: they participate in the elaboration and development of research and help to identify needs and relevant topics to explore.
However, the individuals who most often assume this unelected role tend to be especially involved, knowledgeable, and articulate; as a result, they cannot fully represent their peers.
It is critical to hear about the experiences and outcomes reported by people with T1D
By relying solely on objective data (e.g., glycated hemoglobin, number of hypoglycemic episodes), most research fails to capture the lived experience of people with T1D and their families and, consequently, the extent of the burden they carry.
A more accurate and richer picture can be obtained using certain research methodologies (e.g., questionnaires, interviews) which allow people with T1D to share both their outcomes (e.g., medical data) and their experiences. The BETTER registry questionnaires are a good example.
To illustrate the relevance of such approaches, let’s use hypoglycemia as an example. Two individuals with a hypoglycemic episode of the same value (e.g., 3.5 mmol/L) might experience them completely differently from one another or even from one episode to the next, according to the circumstances. The shared reality of people with T1D can therefore provide essential and complementary information.
In the BETTER registry, individuals are asked, among other things, to report the nature and intensity of their symptoms, the emotions involved, the challenges of self-treatment, and the consequences that hypoglycemic episodes (or the fear of them) can have on their personal, professional, and social lives.
The information shared can shed some light on invisible aspects that impact the way people cope with the burden of hypoglycemia (e.g., whether or not they are alone, past experiences, symptom intensity, sex and gender, cultural background, socioeconomic status, local regulations).
Considering the outcomes and experiences of people with T1D is also key to:
- measuring aspects related to quality of life;
- collecting information from people who may be less likely to participate in other research (e.g., severely disadvantaged communities, minorities);
- obtaining information that cannot be obtained with objective measures (e.g., the experience of stigma).
It is essential to properly value the voice of people with T1D in order to conduct more relevant research, minimize blind spots and promote improved, customized care.
Still a long way to go
The nature of the research community itself is probably the reason that measures and experiences reported by people with T1D are still not widely used in current research. Indeed, we’ve found that in the review process required to publish research, the data reported by people with T1D—considered unreliable—have next to no weight compared to measures that are considered “objective” and quantifiable (e.g., HbA1c).
In addition, research and care are most often directed toward improving diabetes management rather than caring for patients.
Training must therefore be made available at the international, national and local levels to help researchers and other health system stakeholders familiarize themselves with the added value of data reported by people who bear the burden of the disease.
It’s about time we give more weight to the voice of people with T1D and strive to develop a more democratic health care system and improve health care!
If you or your child are living with T1D in Canada, you can fill out the questionnaire(s) in the BETTER registry and share YOUR own reality.
- Wu, Zekai et al. “Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), it’s time to give more credits to patients’voice in research: the example of assessing hypoglycemia burden.” Diabetes & metabolism, vol. 49,2 101417. 28 Dec. 2022, doi:10.1016/j.diabet.2022.101417
Written by: Sarah Haag RN. BSc.
- Amélie Roy-Fleming Dt.P., EAD, M.Sc.
- Anne-Sophie Brazeau RD, Ph. D.
Aude Bandini, Claude Laforest, Jacques Pelletier, Eve Poirier, Sonia Fontaine, Nathalie Kinnard, Laurence Secours, Michel Dostie, Marie-Christine Payette, patient-partners of the BETTER project
Linguistic revision by: Marie-Christine Payette