Astrid Janssens, professor patient and public participation, strives to contribute to more equitable knowledge institutions. Where the uniqueness of patients’ experiences and knowledge are acknowledged and valued. Her work aims to contribute to knowledge spaces where patients collaborate with staff, partners and students to create better health(care). Here, Astrid shares her vision and tells us about her unique chair at UMC Utrecht.
What makes this chair unique?
“The chair of patient and public participation is the first of its kind in the Netherlands. There are people working in the same field, yet the specific focus and content of this chair is really unique. The goal is not only to practice participation but also to study it and, as such, position this collaborative practice in health(care) as a separate field of research,” explains Astrid.
Why is it important to study participation?
“Over the past 20 years, efforts to involve patients and members of the public in the delivery of health care, research and education have been successful. The next step is to study this practice of collaboration. Astrid shares a particular concern when she asks: “Are we doing it well?”. “This chair also provides a form of legitimization for this field. It establishes participation as a discipline where we both practice and study it. The knowledge gained through research can, in turn, enhance our practice.”
What are the gaps of knowledge in this field?
“Many. In particular, questions related to knowledge and knowledge production: what do we consider as knowledge and how can we integrate different types of knowledge? Another key focus is questions regarding the power dynamics and roles of the different partners in these newly established collaborations. For example, how can a patient gain legitimacy in a world that isn’t theirs—the academic world? At its core, my research is about the methods we use to acquire and use knowledge. How to do justice to all parties involved: what is the right way to do that?” explains Astrid.
“We also work on developing new methods to study this collaborative practice. Until now, we relied on methods that were not developed for this type of research. To achieve this, we will need to embrace a transdisciplinary approach.”
What about diversity and inclusion in this field?
“Diversity and inclusion are very important in the field of patient involvement. Currently, we predominantly collaborate with people who are close to us: mostly white people with a higher education or a professional background in the healthcare system. As a result, we fail to include a large group of people. We need to rethink the way we work with patients in our research, education and healthcare. The question we want to ask is: how do we change that? How do we make our practices accessible to everyone?”
“Diversity is one of the greatest challenges in this field. If we engage with a select group of patients only and use their experiences and knowledge to improve our healthcare system, we end up creating a system tailored to that specific group. This would contribute to the existing large-scale issue of health inequality- something we must avoid.”
What is important for making participation accessible?
“There are many factors, such as the use of language. I think listening, with an openness and willingness to witness and receive patient stories, is one of the most important. Creating a space where people can share their experiences and knowledge in their own words. Equally important is reporting back to people about what has or has not been done with their input. This approach acknowledges the other person as a partner in research, education or healthcare; someone who’s knowledge matters.”
Where do you hope the field of participation will be in five years’ time?
“In hospitals, I hope that patients will be involved in all various areas of our work – including those that might be considered off limits. For example, team meetings where patient files are discussed, taking an active role in shaping policies, or partnering with people at the managerial and governance level. My vision is to see patients named on the staff list one day, fully embracing a permanent and paid role within the organization.” concludes Astrid Janssens.
