The kaleidoscope was turned and shed new light on patient communication

When the Center for Clinical Research and Prevention (CKFF) reached out to CAMES with a request for a workshop focusing on good communication with their research participants, we reached out to a special group of citizens who are already affiliated with CAMES - the so-called patient educators, as they have extensive experience in participating in clinical research.

Perspective shifting and user involvement are part of CAMES' DNA when it comes to communication and collaboration. In a co-creation process between the three parties, unique points in the relationship in the communication situation were uncovered.

The relationship matters for collaboration
The relationship between clinician and patient and between researcher and participant is crucially different:

In clinical work, the patient needs the clinician's help and is therefore in an asymmetrical relationship of dependence on the clinician. In the relationship between clinical researcher and participant, the asymmetry is reversed.
Here it is the researcher who is dependent on the participant's willingness to make themselves available.

The researchers in CKFF typically have basic communicative experience from the relationship between them as clinicians and patients.
Most were aware that the roles and relationships in clinical research are different, but listening to participants and reflecting together on perceptions and expectations of the collaboration created new knowledge:

• Listening to the participant's motives and questions does not need to take extra time
• Attention to the participant helps the researcher to adapt his/her communication
• Participants are predominantly motivated by the desire to contribute to research and make a difference
• Participants are particularly motivated if they feel "type-cast"
• Participants are interested in the research they contribute to and want to know about results
• The agenda and timetable should be framed so that time and meaning do not slip for the parties

Head of Section at CKFF Line Lund Kårhus explains how they as workshop participants were inspired by the stories and perspectives shared by the experienced research participants:

"Many of our researchers are clinicians and are used to the doctor-patient relationship, but here it became more reciprocal, with both parties benefiting from the combined expertise in the room. Researchers can sometimes have fixed ideas about how we communicate. I think it's healthy for us to be challenged."

The researcher is dependent on recruiting and retaining participants for the project, which means that the researcher needs to take a keen interest in what is meaningful to the participants. What motivates and what demotivates?

The citizen should always be at the center
Each participant has his or her motives, what they are is known only to the individual. There are commonalities, but there are also very individual motives that can only be understood by engaging in dialog. In the professional relationship, there is a tendency for the professional party to assume that they know what the user wants and needs.

However, this turns out to be far from always the case. In the clinic, the clinician may not realize it, because the patients need them. For research purposes, it may become more apparent, as the citizen is more likely to say 'no thanks' and walk away.

By putting the protagonist at the center in this way, both researchers and clinicians gain a unique insight into what is important to this particular person. This allows the professional to adapt their communication to meet the needs and desires of the individual.

In clinical research, it may be the difference between the participant completing or returning a second time, while in the clinician-patient encounter it may be the difference in compliance and patient safety.

A replicable model
The experience of working together reflects a replicable model. We are happy to take on new tasks with a focus on communication and relationships. It is a question of entering into a dialog with the client about the conditions and relationships that characterize their particular field, and on this basis present and facilitate both knowledge and process in the desired direction.

If you want to know more, please contact

Camilla Thamdrup: camilla.thamdrup@regionh.dk

Judit Vibe Madsen: judit.vibe.madsen@regionh.dk

Anne Marie Skaarup: anne.marie.skaarup@regionh.dk

Patients as educators - a panel of users and citizens
CAMES has been using the concept of patients as educators for a number of years . Through patient stories, clinicians gain insight into patients' perspectives and find it easier to put them at the center.

At the workshop in question, the research participants were recruited from CAMES' own team of patient and family educators, which means that the participants are qualified to contribute to and participate in learning processes, especially among health professionals.