Including patients in decisions about drugs


Companies and authorities sometimes involve individual patients and patient representatives in their decisions. By using preference studies, we can find out what larger groups of patients think about drugs. And how they weigh the good and the bad against each other. But what do patients think about being included in these decisions?

Karin Schölin Bywall
Karin Schölin Bywall, PhD student

In her PhD project, Karin Schölin Bywall, interviewed Swedish patients with Rheumatoid Arthritis to find out what they think about patient involvement in decisions taken by the authorities that approve drugs.

Karin Schölin Bywall’s study was recently published in The Patient. Patients in her study emphasized three things. First, that preference studies can create possibilities for patients to actually take part in decisions. Secondly, that results from preference studies are important in all the stages of developing a new drug. And third, that patients that are part of preference studies have to be well informed about three things: the purpose of the study, how the results will be used, and how the drug works.

The participants in her study believe that they should have a right to influence decisions about what drugs should be approved. They also said that it is important that decision-makers take patient’s opinions into account. Especially since patients might have a different opinion about what is a valuable benefit, or an undesired risk.

The patients she interviewed thought that preference studies could help authorities to include patient’s needs, life-style and health in their decisions. Overall, they were positive to using preference studies in decisions at different stages of the life-cycle of a drug: from development through evaluation and approval, to when the drug is on the market and available to patients. But some of them were skeptical towards the companies that develop drugs. And doubted whether it is good to involve the companies that develop drugs early on in the process.

By Josepine Fernow

Read article: Bywall, K.S., Veldwijk, J., Hansson, M.G. et al. Patient Perspectives on the Value of Patient Preference Information in Regulatory Decision Making: A Qualitative Study in Swedish Patients with Rheumatoid Arthritis, Patient (2018), First online 15 November 2018, doi:

About Karin Schölin Bywall

Karin Schölin Bywall is a PhD student working in Mind the Risk and PREFER projects. She has a master of science in public health from Mälardalen University where she also teached public health.

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