Role of European patient associations when informing patients about biosimilars

Biosimilars/Research | Posted 21/05/2021 post-comment0 Post your comment

Biosimilars contribute to more sustainable healthcare systems by generating competition in the off-patent biologicals market. The extent to which the benefits of competition in the marketplace are exploited depends, of course, on their use in clinical practice. One of the factors determining adoption in clinical practice is the acceptance by healthcare providers (HCP) and patients. Often, a lack of acceptance comes down to shortcomings in knowledge and understanding about biosimilars. Educating patients about biosimilars is therefore considered as one of the key elements for a successful market for off-patent biologicals and biosimilars.

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During the past years, several studies pointed out a poor understanding about biosimilars among different European patient groups [1-5]. This finding is not surprising, as many studies involved the entire patient population, regardless of whether biosimilars were relevant for their situation. It is however not the intention, nor desirable, that all patients have a good understanding about biosimilars. After all, only a limited group of patients will come in contact with biological therapies. It is therefore only relevant for this subgroup to have a certain level of knowledge about biosimilars.

But how are patients best informed to counter this lack of knowledge, based on the most recent scientific evidence? Furthermore, what is the role of patient associations in this regard?

In a review article by Vandenplas et al., the authors reviewed scientific literature on how to inform patients about biosimilars [6].

This review identified five main strategies to inform patients about biosimilars: (1) provide understandable information; (2) in a positive and transparent way; (3) tailored to the individual’s needs; (4) with one voice; and (5) supported by audiovisual material. Various stakeholders play an important role when informing patients. Physicians, nurses and pharmacists are the closest to patients and are a trusted source of information. On the other hand, organizations also have a responsibility such as scientific associations, regulatory authorities, and especially patient associations.

For this reason, a web-based screening of European patient associations was performed by the authors on publicly available information or educational material about biosimilars. European members of the European Patients’ Forum (EPF) and the International Alliance of Patients’ Organizations (IAPO) were included.

Patient associations have become increasingly important in correctly informing patients about biosimilars. However, the level of detail, correctness and the tone of the provided information varied strongly. Most patient organizations refer to the biosimilar brochure developed by the European Commission (EC) [7]. However, some developed their own educational material such as brochures, videos and position papers. In general, patient associations agree on the fact that biosimilars are equal treatment options ensuring a more sustainable healthcare system. Nonetheless, some patient associations should be cautious not to fall prey to negatively framed, incorrect or outdated information about biosimilars. Several patient associations express a rather negative attitude, in particular towards transitioning from the reference product to a biosimilar; or provide outdated or incorrect information.

Information should always be evidence-based and thus in line with current scientific insights. As for all stakeholders, patient associations should distance themselves from statements about biosimilars that are not scientifically substantiated. Therefore, collaboration with independent and knowledgeable experts to develop such material is fundamental.

Informing patients about biosimilars should be part of a larger approach to support the adoption of biosimilars in Europe. It is paramount to set up a close collaboration between stakeholders to communicate, develop and disseminate factual information about biosimilars supporting patients’ understanding of biosimilars.

Conflict of interest
The authors of the research paper [6] declared that there was no conflict of interest.

Abstracted by Yannick Vandenplas, PhD Researcher Policy for Best-Value Biological Medicines in Belgium, Department of Pharmaceutical and Pharmacological Sciences, KU Leuven, Belgium.

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To further enhance the objectives of GaBI in sharing information and knowledge that ensure policies supportive of safe biosimilars use, we are pleased to announce that we will be launching a new section on GaBI Online and GaBI Journal, the ‘Latin American Forum’ (in Spanish) featuring the latest news and updates on research and developments in generic and biosimilar medicines in Latin America.

Register to receive the GaBI Latin American Forum newsletter. Inform colleagues and friends of this new initiative.



Para fomentar los objetivos de GaBI sobre la difusión de información y conocimiento sobre las políticas de apoyo que garantizan el uso seguro de medicamentos biosimilares, nos complace anunciar el lanzamiento de una nueva sección en GaBI Online y GaBI Journal, el ‘Latin American Forum’ (en español), que presentará las últimas noticias y actualizaciones en investigación y desarrollo sobre medicamentos genéricos y biosimilares en Latinoamérica.

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1. Jacobs I, Singh E, Sewell KL, et al. Patient attitudes and understanding about biosimilars: an international cross-sectional survey. Patient Prefer Adherence. 2016;10:937-48.
2. Aladul MI, Fitzpatrick RW, Chapman SR. Patients' understanding and attitudes towards infliximab and etanercept biosimilars: result of a UK web-based survey. BioDrugs. 2017;31(5):439-46.
3. Frantzen L, Cohen JD, Tropé S, et al. Patients’ information and perspectives on biosimilars in rheumatology: a French nation-wide survey. Joint Bone Spine. 2019;86(4):491-6.
4. Peyrin-Biroulet L, Lönnfors S, Roblin X, et al. Patient perspectives on biosimilars: a survey by the European Federation of Crohn's and Ulcerative Colitis Associations. J Crohns Colitis. 2017;11(1):128-33.
5. Waller J, Sullivan E, Piercy J, et al. Assessing physician and patient acceptance of infliximab biosimilars in rheumatoid arthritis, ankylosing spondyloarthritis and psoriatic arthritis across Germany. Patient Prefer Adherence. 2017;11:519-30.
6. Vandenplas Y, Simoens S, Van Wilder P, et al. Informing patients about biosimilar medicines: the role of European Patient Associations. Pharmaceuticals (Basel). 2021;14(2):117.
7. European Commission. Information for patients: What I need to know about biosimilar medicines? [homepage on the Internet]. [cited 2021 May 21]. Available from:

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