Tuesday, April 4, 2023
Co-creation with patients during research and development of health innovations: it seems to weigh more and more heavily, for instance in grant applications. While this is a good starting point in itself, the question is how to organize this in such a way that it adds value for both the patient and researcher. This was the central question of last Wednesday's Medical Delta Café 'Innovating with the patient by the side: co-creation or cause for frustration?'
From four different perspectives - those of the physician, the organizer, the guideline developer, and the patient - the topic was examined. It resulted in a lively and substantive discussion.
Informing leads to participating
Co-creation is a prerequisite for improving clinical care. Medical Delta professor Natasja de Groot kicked off with this stance. De Groot has extensive experience in patient participation in research, including within the Medical Delta Cardiac Arrhythmia Lab scientific program and the AFIP Foundation, a community in which researchers, doctors, and patients jointly aim to increase knowledge on atrial fibrillation. Informing leads to participating, says De Groot. Creating a constant flow of information results in participation and co-creation.
Co-creation is a craft, it requires specific expertise and funding
“I see co-creation as an ongoing process, in which I prefer to involve my patients in the research as early as possible and take their opinion into account during the process. But I also get the question of what it means for the patient. The results of the research are often only noticeable years later.” According to De Groot, communication is key. “Both recruiting and guiding patients through the process requires a lot of attention and precision.” She ended her presentation with the statement that co-creation is not an extra task for the physician. “It is a profession in its own right, requiring specific expertise and own funding.”
Foto's: Eelkje Colmjon
Hybrid intelligence
Doing scientific research is a continuous process that involves looking at things from different perspectives. “All parties involved come with their expertise and values,” stated Prof. Dr. Catholijn Jonker, professor of Interactive Intelligence at TU Delft and second speaker at the meeting. This process does not stop when the research is finished, says Jonker: “It is precisely after the results of the research reach the patient that feedback returns. Researchers should consciously focus on that.”
In her research, a collaboration between humans and artificial intelligence is the goal. By combining artificial intelligence with human knowledge, a symbiosis between different knowledge can lead to hybrid intelligence, in which both forms of intelligence exceed their own goals. Patient participation is important in this. As an example, Jonker mentioned a robot buddy that helps children with diabetes. “This creates a real bond between technology and child, where the cold technique is enveloped by the warmth of human interaction. This is the essence of co-creation for me. Hybrid intelligence can also be an enormous help in achieving that co-creation.”
Doing the right research in the right way
Participation is essential. It increases the chance of useful research results and their application in practice. That is what Teus van Barneveld, Director of Kennisinstituut van de Federatie Medisch Specialisten stated in his presentation. According to him, the implementation of this already starts with putting things on the agenda: are we investigating the right thing and then doing it in the right way? “Quite a lot of research is focused on the same diseases or problems, or outcome measures are used that are not in line with practice. As a result, there is a good chance that the research will end up in a drawer and that research funds will not be well spent. By involving patients more, innovations can be developed more effectively."
By involving patients more, innovations can be developed more effectivelyVan Barneveld advocated an 80-20 division, in which 80% of the research is realized through joint agenda setting and co-creation with patients, and 20% free space. “There are good examples of joint agenda setting, such as the national knowledge agenda and the research agendas of the professional associations of medical specialists and general practitioners.”
The patient does not need technical knowledge
As a patient with cardiac arrhythmia, Marcellino Kropman is often involved in development processes. He tells the audience that as a patient, he would only like to hear information that applies to him as a patient. “I have no technical background and no need for the technical knowledge behind a development. If someone wants to buy a car, you don't discuss the parts of the engine first. Therefore, look at the involvement of the patient as a selective means. I do not have to be involved for every trifle.” Kropman indicates that he is particularly interested in the outcome and how he can help. “Communication is also key here: how can the patient, in consultation with the researcher, be understood in a way that both are understood? Translating jargon into understandable language and listening to each other are the basic principles on which we can build further.”
This was also frequently discussed in the subsequent discussion with the speakers and with the public, in which, among other things, the relevance for both researcher and patient during research projects was emphasized: at which moments in an innovation or research process does co-creation have added value? And when is it a burden for researcher and patient? One of the conclusions was that by openly discussing these kinds of questions with each other, co-creation also arises - but then about the process itself. The discussion proceeded at the subsequent networking reception.
Next Medical Delta Café: webinar Sustainable Healthcare
The next Medical Delta Café will take place on Monday 3 July. In an online lunch meeting, the results of the research that master students conducted within the Thesis Lab Sustainable Hospitals form the guideline. Speakers engage in conversation with each other and with the audience from different angles. You can already register for this online Café via this link.
Medical Delta Cafés are made possible with the support of the Province of Zuid-Holland.
