“We must see the patient as a participant”
Now and then, Elsa's users let us know that they don’t feel involved in the decisions concerning their own health. Ellen Landgren, nurse and researcher in rheumatology at Lund University, Sweden, is working for a change.
Ellen Landgren has a great interest in the individual behind the diagnosis, and in healthcare from a patient perspective. Her doctoral project was called "Person-centred care and preferred outcomes in early rheumatoid arthritis—the patients’ perspective", and was partly a European collaboration.
Control is key
In her research, Landgren has shown, among other things, that it is of great importance for patients with RA not to be limited by their disease, and to feel that they themselves have control over their situation. Being able to trust that healthcare is available when you need it relieves anxiety and creates security.
– I wouldn’t say the results are rocket science, but the reactions I get are still a certain amount of surprise, and that “more rheumatologists should take part of this research”. This means that scientific studies in this area are important. The results form a foundation that we can build on, says Landgren.
A meeting between two experts
She explains that healthcare personnel see a patient with RA for a very short time of that person's life, and that they then tend to focus on the joint that hurts.
– Sometimes we lose sight of broadening our perspective. It is a challenge for us to be focused on the clinical and for the patient to achieve remission—and to see the whole patient at the same time. Then we may fail to speak the patient's language. That in itself makes us come further apart.
– We must not forget that the meeting between healthcare personnel and patient is a meeting between two experts, with different perspectives and knowledge.
Too much information at once
In her research, Ellen Landgren has interviewed people who are relatively newly diagnosed, but have been on treatment for a few months. They have come out of the worst flare-up and have had time to start digesting the diagnosis.
A year later, she has then interviewed the same people again. Among other things, this has caused her to think about when the right time is for various healthcare initiatives.
– There is a lot of knowledge in rheumatology. This means that when you receive your diagnosis, you are sometimes bombarded with information brochures, and in some cases also offered to participate in studies. In addition, you must learn about your medicine. And all this in a very short time. It can easily be too much to take in at once.
Different phases
She has found that after a year or so, the thoughts of these people look different—the focus on the physical has subsided a bit, and often anxiety has taken over. You think about the future and what life will be like. It is rather the mental health that is in focus.
– Healthcare needs to be adapted to the individual and we must make sure to do the right thing when the person in question is ready. In order to help in the right way, we have to see the patient as an active participant in this, not just as a recipient of healthcare efforts.
– The patient should be at the center, they need to feel independent and empowered. Then anxiety also will decrease, Landgren asserts.