How lay people understand and make sense of personalized disease risk information

Olga C Damman, Nina M M Bogaerts, Maaike J van den Haak, Danielle R M Timmermans

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

BACKGROUND: Disease risk calculators are increasingly web-based, but previous studies have shown that risk information often poses problems for lay users.

OBJECTIVE: To examine how lay people understand the result derived from an online cardiometabolic risk calculator.

DESIGN: A qualitative study was performed, using the risk calculator in the Dutch National Prevention Program for cardiometabolic diseases. The study consisted of three parts: (i) attention: completion of the risk calculator while an eye tracker registered eye movements; (ii) recall: completion of a recall task; and (iii) interpretation: participation in a semi-structured interview.

SETTING AND PARTICIPANTS: We recruited people from the target population through an advertisement in a local newspaper; 16 people participated in the study, which took place in our university laboratory.

RESULTS: Eye-tracking data showed that participants looked most extensively at numerical risk information. Percentages were recalled well, whereas natural frequencies and verbal labels were remembered less well. Five qualitative themes were derived from the interview data: (i) numerical information does not really sink in; (ii) the verbal categorical label made no real impact on people; (iii) people relied heavily on existing knowledge and beliefs; (iv) people zoomed in on risk factors, especially family history of diseases; and (v) people often compared their situation to that of their peers.

DISCUSSION AND CONCLUSION: Although people paid attention to and recalled the risk information to a certain extent, they seemed to have difficulty in properly using this information for interpreting their risk.

Original languageEnglish
Article number20 (5)
Pages (from-to)973-983
Number of pages10
JournalHealth Expectations
Volume20
Issue number5
DOIs
Publication statusPublished - Oct 2017

Funding

Funding information This study was funded by The Netherlands Organisation for Scientific Research (NWO) within the programme “Comprehensible Language and Effective Communication.” The Dutch Diabetes Research Foundation, the Dutch Heart Foundation and the Dutch Kidney Foundation also contributed financially to the project. The Intertain Lab of the VU University in Amsterdam, the Netherlands, allowed us to use their laboratory setting and Tobii eye tracker free of charge. All participants are thanked for their participation.

FundersFunder number
Vrije Universiteit Amsterdam
Hartstichting
Nierstichting
Diabetes Fonds
Nederlandse Organisatie voor Wetenschappelijk Onderzoek

    Keywords

    • risk information
    • user research

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