Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW)
Speiser D, Heibges M, Besch L, Hilger C, Keinert M, Klein K, Rauwolf G, Schmid C, Schulz-Niethammer S, Stegen S, Westfal V, Witzel I, Zang B, Kendel F, Feufel MA (2023)
Publication Type: Journal article, Review article
Publication year: 2023
Journal
Book Volume: 7
Article Number: e41179
DOI: 10.2196/41179
Abstract
iKNOW is the first evidence-based digital tool to support personalized counseling for women in Germany with a hereditary cancer risk. The counseling tool is designed for carriers of pathogenic gBRCA (germline breast cancer gene) variants that increase the lifetime risk of breast and ovarian cancer. Carriers of pathogenic variants are confronted with complex, individualized risk information, and physicians must be able to convey this information in a comprehensible way to enable preference-sensitive health decisions. In this paper, we elaborate on the clinical, regulatory, and practical premises of personalized counseling in Germany. By operationalizing these premises, we formulate 5 design principles that, we suggest, are specific enough to develop a digital tool (eg, iKNOW), yet wide-ranging enough to inform the development of counseling tools for personalized medicine more generally: (1) digital counseling tools should implement the current standard of care (eg, based on guidelines); (2) digital counseling tools should help to both standardize and personalize the counseling process (eg, by enabling the preference-sensitive selection of counseling contents from a common information base); (3) digital counseling tools should make complex information easy to access both cognitively (eg, by using evidenced-based risk communication formats) and technically (eg, by means of responsive design for various devices); (4) digital counseling tools should respect the counselee’s data privacy rights (eg, through strict pseudonymization and opt-in consent); and (5) digital counseling tools should be systematically and iteratively evaluated with the users in mind (eg, using formative prototype testing to ensure a user-centric design and a summative multicenter, randomized controlled trial). On the basis of these paradigmatic design principles, we hope that iKNOW can serve as a blueprint for the development of more digital innovations to support personalized counseling approaches in cancer medicine.
Authors with CRIS profile
Involved external institutions
Charité - Universitätsmedizin Berlin
Germany (DE)
Technische Universität Berlin
Germany (DE)
BRCA-Netzwerk e.V.
Germany (DE)
Universitätsklinikum Hamburg-Eppendorf (UKE)
Germany (DE)
Germany (DE)
Technische Universität Berlin
Germany (DE)
BRCA-Netzwerk e.V.
Germany (DE)
Universitätsklinikum Hamburg-Eppendorf (UKE)
Germany (DE)
How to cite
APA:
Speiser, D., Heibges, M., Besch, L., Hilger, C., Keinert, M., Klein, K.,... Feufel, M.A. (2023). Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW). JMIR Formative Research, 7. https://doi.org/10.2196/41179
MLA:
Speiser, Dorothee, et al. "Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW)." JMIR Formative Research 7 (2023).
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