Decision-Making By Women On Participating Or Not Participating In The Organized Breast Cancer Screening

Abstract

Breast cancer is the most common type of cancer among women in the Netherlands. Since 1989, every two years, Het Rijksinstituut van Volksgezondheid en Milieu (RIVM) organizes a breast cancer screening for women between 50 and 75 years old. The Dutch government organizes the screening because the advantages at the general population level are considered higher than the potential disadvantages. Over the last years, the policy of RIVM considering the screening was mostly focused on the interests of the public as a
whole. On a citizen level the advantages do not necessarily outweigh the disadvantages (e.g., over-diagnosis, false positives, false negatives) [1]. Recently, RIVM introduced a more responsible role towards the public in its policy. RIVM is adopting a more individually centred approach, taking into account more personal and citizen-level factors, and supporting women with informed decision-making. However, research made RIVM aware of the fact that (1) not all women do make well-informed choices yet and (2) women have a very positive attitude towards the screening [2]. It seems that the new goals ask for another communication strategy. This project addressed the challenge: “how can women be supported in making a well-informed decision whether they want to participate or not in the organized breast cancer screening?”

Research
A user-centred design research is carried out, in which a diverse group of women was included regarding ethnicity and literacy. Besides that, a broad, specified context study is conducted to explore solution space.

Decision-making
In the current communication strategy, only risk numbers are communicated. This strategy is based on the rational decision-maker’s perspective, who has the capabilities and motivation to understand and to interpret the risk information [3]. However, it is often experienced as ‘jargon’ and ‘difficult to understand’. Literature research showes that, besides ‘accurate information’ also the elements ‘freedom of choice’ and ‘awareness of personal values’ are essential for a well-informed decision [3]. The user-centred research of this project showes that women do not make a well-informed decision and, perhaps more importantly, are not supported to do so. A noteworthy thing is that women receive a regular envelope when entering the program at the age of 50. The envelope includes the information and invitation at the same time.

Besides this, women do not only base their decision on the rational models. Beliefs also seem to influence women’s decision-making process [3]. The inspirational research of this project showes that women are also aware of different meanings that are associated with the screening, such as: menopause, aging, uncertainty of life and bodily changes. These meanings play a role in the decision- making process. The current communication material does not give attention to all essential elements for well-informed choices, and moreover to the other meanings. Inspirational research showes that another communication focus might be just as effective: emotions as a source of information [4]. If RIVM showes more empathy to women’s perspectives and communicates in a common language instead of ‘jargon’ (quantitative information about risks), emotion could be used as an effective source for informing and for emphasizing the other essential elements.

Design concept
A periodic intervention of 3 magazines between the age of 49 and 50 is designed, which should activate and guide the decision-making process (see figure 3). The magazines offer women’s stories which represents (1) living scenario’s, (2) different choice options and (3)
different motivations for decisions. The women’s stories create:

A. the possibility to emphasize the 3 essential elements for a well- informed choice
B. space to show empathy to women’s interests and concerns, regarding menopause, aging and uncertainty in an inspiring and sensitive way.

After the third magazine, the woman will receive the first invitation. Whether the design concept realizes a well-informed decision-making on the long-term needs to be further tested as is recommended RIVM. Although, the concept test revealed that the magazine gives the possibility to emphasize ‘communicating on an emotional level’.


[1] RIVM. (2012). Uitslagen en testeigenschappen - RIVM. Retrieved September 28, 2018, from https://www.rivm.nl/Onderwerpen/B/Bevolkingsonderzoeken_en_screeningen/Screening_de_theorie/Uitslagen_en_testeigenschappen

[2] Douma L.N., Uiters E., Timmermans D.R. (2016) The Dutch public are positive about the colorectal cancer-screening programme, but is this a well-informed opinion? BMC Public Health. 2016;16(1):1208.

[3]Timmermans DRM. Wat beweegt de kiezer? Over de betekenis van weloverwogen en geïnformeerde keuzes voor gezondheid en preventie. Amsterdam: ZonMw; 2013.

[4] Roeser, S. (2006). The role of emotions in judging the moral acceptability of risks. Safety Science, 44(8), 689–700.