Methodology, rheumatoid arthritis and patient involvement

Drugs should benefit patients. By extension, they should have a say in designing research meant to find out what they think about drugs. Here, Karin Schölin Bywall shares her thoughts about involving patients in research and working together with stakeholders.

To get a drug approved, regulators think about the benefit, quality and safety of a drug. Karin Schölin Bywall looks at how rheumatoid arthritis patient preferences can add value when regulators make decisions in drug development. Her PhD project is part of a large public-private partnership called PREFER.

Being part of PREFER makes it possible to develop research questions with senior researchers from universities and the pharmaceutical industry. It ensures stakeholder perspectives in her PhD project. PREFER gives her a chance to get perspectives on her work from patients, industry, health technology assessment bodies and regulators. PREFER has four patient organization partners, which gives her a unique opportunity to learn what they think is important. Her project focuses on patients with Rheumatoid Arthritis (RA). They suffer from joint inflammation, causing tenderness, swelling and damage. RA can lead to disability and premature death.

There are different treatment options with different risks and benefits. This is a reason why RA makes an interesting case for preference studies. If patients can have a treatment that matches what they want, they will probably be more satisfied with their treatment.

Many patient advocacy groups use the device “nothing about us without us”, that is: research on and with patients should also include their perspective. The patient research partners in her project will help in the pilot testing and improving the design. In her own project, she has chosen to involve Reumatikerförbundet, a Swedish advocacy group for Rheumatoid Arthritis. 

“I am very fortunate to be able to have patients who have trained to help with research in my project. The patient research partners will help in the pilot testing and improving design”, says Karin Schölin Bywall.

She says that for her, one of the more interesting aspects of the PREFER project is the focus on educational methods to elicit well-informed patient preferences. This is close to her own public health background and interest in health communication. For this reason, serious games are a part of her PhD project.

PREFER has 33 partners from academic research organisations, patient organisatoins, health technology assessment and the pharmaceutical industry. She says that it has taken a while to find a place in a group the size of PREFER, but that her role is becoming clear and the collaboration is valuable for her thesis project, as well as for the PREFER project as a whole. She says that although she is not 100 per cent certain that PREFER has understood what her thesis project is about, but it fits very well with the work she does as part of the larger project.

“Being part of PREFER is very rewarding: Knowing that I am contributing to something that has the potential to have impact on how Industry, Health Technology Assessment bodies and regulators use patient preference research” says Karin Schölin Bywall.

Nevertheless, she says, “it is also good to have my own project, with a more specific focus, where I own the questions”. Karin Schölin Bywall will perform interviews as part of PREFER, and also follow up with more interviews for her own independent thesis work. However, not everything she does in PREFER benefits her thesis work directly.

“Being involved in tasks in a large project helps enrich my thesis work and puts in in context. It also helps ensure the quality of my work. The interview guides we use have been developed in collaboration and pilot tested before I translated them to Swedish for my thesis work. I am convinced I would not have been able to reach the same quality on my own” says Karin Schölin Bywall.

By Josepine Fernow, 6 September, 2017

About Karin Schölin Bywall

Karin Schölin Bywall studied public health at Mälardalen University. Her master thesis dealt with health promotion workplaces. Before joining CRB, Karin Schölin Bywall spent a year teaching at Mälardalen University, giving courses on health promotion on the individual level and qualitative research methodology. As a student, Karin Schölin Bywall was also a research assistant in a project focusing on equity in health. For a period, she worked as a carer for young people with neuro-psychiatric disorders. She also spent one term as an exchange student in China, studying master level courses in epidemiology and social medicine.

About the PhD project

Karin Schölin Bywall will defend her thesis at Uppsala University in the spring of 2021. The project is part of PREFER and is supervised by Mats G. Hansson (PREFER coordinator), Ulrik Kihlbom (main supervisor and public co-lead for the methodologies work stream) and Jorien Veldwijk (public co-lead for the clinical case studies work stream).  The supervisors are all from the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. CRB is a multi-disciplinary research environment with several ongoing PhD projects looking at preferences, mainly using Discrete Choice Experiments. The projects’ focus range from genetic risk information, antibiotics resistance to cardiovascular risk information and communication.

Read about the project

Read about DCE's

About PhD students in PREFER

PREFER involves five PhD students from the University of Leuven, the Erasmus Medical Centre in Rotterdam and Uppsala University. The students have their own PhD projects with specific thesis topics that all relate closely to PREFER. Students are involved in project activities and will publish several papers within the PREFER framework. Students also work closely with both stakeholders, public and private partners to inform their work.