“A dialogue with the patient can shorten the path to the right medication”
The time it takes to find a drug that works can be significantly reduced if the patient is allowed to be more involved in their treatment. That is the opinion of Karin Schölin Bywall, public health scientist and researcher at the Center for Research & Bioethics, CRB, at Uppsala University.
A fundamental part of the frequently mentioned “patient perspective” is that a patient who needs medical treatment should be part of the decision-making process. Many individuals diagnosed with rheumatoid arthritis and other rheumatic diagnoses state that it takes a long time to find the right medication, and that they do not feel involved in the dialogue about which medications are available.
Little effect or bothersome side effects
There are a variety of drugs that may be considered for RA treatment. Not all drugs are suitable for everyone. In some instances, the desired effect is not achieved, while in others the side effects can cause problems that are seen as greater than the actual benefit of the drug.
The risk of receiving the wrong treatment is that problems can be aggravated unnecessarily. You can also suffer from psychological symptoms, both as a result of feeling physically unwell and as a side effect of a drug that is not right for you. Commonly reported psychological side effects include nervousness, anxiety, depression, and difficulty sleeping.
As a patient, it can be difficult to make a conscious and informed decision if you have not been consulted about which treatments actually exist and their differences, for example regarding their expected benefit and potential side effects. Karin Schölin Bywall works as a researcher at the Center for Research & Bioethics at Uppsala University and is specifically interested in how the patient can be more involved in their care so that they can receive medication that suits them as soon as possible.
The interaction with healthcare inadequate
Karin is involved in The Nora Project—an extensive research project that is part of the Nordic nations' major investment in research and innovation in personalized diagnostics and treatment. The Nora Project will run from 2019 to 2022 and aims for people with rheumatoid arthritis to receive the best treatment based on their individual needs. Karin has conducted a survey and in-depth interviews with people who have RA to investigate the patients' perceived involvement.
“In the survey and the interviews, it was found that the medical appointment itself in several instances is not adequate for the patients’ needs. Many people feel that they are not involved in the dialogue in the way they would like to be. It may be that physicians use complex terminology or that there is not enough time to make a decision. It can also be difficult to formulate your own goals—both physical and psychosocial—before the meeting,” Karin explains.
How can healthcare then better invite the patient in the decision-making process regarding treatment? Karin proceeds:
“Using the survey and the interviews as a foundation, we identified different drug properties that can be compared to each other to assess what is important for me and, based on that, figure out what I should bring up in my doctor’s appointment. Can I endure certain side effects if I regain my physical ability? Or is it more important to feel less tired so that I have the energy to spend time with my family and friends? Only the individual themselves can decide what is most important to them. But this requires an invitation to the discussion and that you’re involved in this decision.“
Karin explains that The Nora Project’s goal is to personalize treatment using a so-called algorithm, a “detailed schedule”, which identifies the right medication for the right person with the help of blood samples, synovial fluid, etc.
“It may not be one hundred percent accurate, but it is a way to make an educated guess and thus shorten the path to a suitable drug.”
The rheumatologist’s role to invite to a discussion
How will Karin's and The Nora Project's research results be used in the long run?
“I want the insights from the project to be applied in practice. If I, as a patient, do not get the expected effect of my medication, or if everyday life is disrupted by the side effects—what other options do I have? Here, a challenge arises regarding communicating in an educational manner,” she says.
“As a patient, I need help to prepare for the doctor's visit. What is important to me? That is why I believe that Elsa is a good tool as an accessory to healthcare. You get the diagnosis, go home and think, read in Elsa, then log and monitor in the app how your wellbeing is affected by the drug,” Karin continues.
As a matter of fact, Elsa and Karin are planning to create a new program in the Elsa app under the theme of patient reception and participation, to aid Elsa's users in conjunction with their medical appointments.
“But it should always be the rheumatologist's role to sincerely invite the patient to a discussion,” Karin concludes.
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