Demand driven research and patient participation

At the UMCG we support and promote the principles of Open Science. One of these principles is the involvement of stakeholders in the research process; research not for patients, but with patients. In this article, we highlight the BAAN project, the result of demand driven research that involves patients in every step of the research cycle.

The BAAN project in the UMCG emerged out of the desire to help patients with a kidney disease with questions about employment.  The project is based on scientific research and combines this with patients’ experience to be able to make the research results as relevant as possible. The project started in 2021.

Including an experience expert

What the end-user wants, in this case the patient, is a question best asked to said end-user. The BAAN project went one step further and made PhD candidate Wim Sipma, an expert by experience, part of the research project. Wim’s perspective offers valuable insights: ‘I have experienced first hand how important work is, even when you are sick. Kidney patients are not only old people, also many young and working people are kidney patients. An important symptom of kidney problems is a precarious energy level. After a really busy day it could well be that your energy level just drops the next day. You’ll sleep and eat less. The disease progresses unpredictably, and differs from person to person. You cannot simply say; with fifty percent kidney function you’ll have fifty percent of your original energy levels. Add to this that you’ll never fully recover. An new kidney may help, I have experienced this myself, but this does not guarantee that you’ll recover to your old level of fitness. Because of this, there is no one-size-fits-all solution for staying actively employed. It is often an balancing act of finding what fits with the patient and their employment situation. This complicates things for employer and employee. 

Research emerging from societal questions

BAAN is a project of the department of Applied Health Research of the UMCG. This department is specialized in involving different perspectives (think of patients and care provides outside the hospital) in designing the research question and executing the research. Such research is very applicable in clinical practice, something we see very clearly in the BAAN project. The BAAN project is a perfect example of research born out of a societal question. Such applied research is also called action research, as opposed to ‘old fashioned’ desk research. Big national research funders in the medical sciences like ZonMW increasingly demand that research is applicable in care settings. Action research is a rigorous way of meeting that condition.  

What is the future of BAAN? It is obvious that BAAN fills a need, but what is the next dot on the horizon? Wim: ‘First we need to make sure we keep doing this in the hospital. That is why I am so happy that the Oncology department approached us to join our project. For people’s happiness in life it is vital that they participate in every aspect.’