Cited by 34BRCA gene mutations in cancerArtificial Intelligence in Healthcare and EducationMobile Health and mHealth Applications

Evaluation of the Rosa Chatbot Providing Genetic Information to Patients at Risk of Hereditary Breast and Ovarian Cancer: Qualitative Interview Study

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Siglen, Elen, Vetti, Hildegunn Høberg, Augestad, Mirjam, Steen, Vidar M, Lunde, Åshild, Bjorvatn, Cathrine·2023·Journal of Medical Internet Research

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Abstract

Background: Genetic testing has become an integrated part of health care for patients with breast or ovarian cancer, and the increasing demand for genetic testing is accompanied by an increasing need for easy access to reliable genetic information for patients. Therefore, we developed a chatbot app (Rosa) that is able to perform humanlike digital conversations about genetic BRCA testing. Objective: Before implementing this new information service in daily clinical practice, we wanted to explore 2 aspects of chatbot use: the perceived utility and trust in chatbot technology among healthy patients at risk of hereditary cancer and how interaction with a chatbot regarding sensitive information about hereditary cancer influences patients. Methods: Overall, 175 healthy individuals at risk of hereditary breast and ovarian cancer were invited to test the chatbot, Rosa, before and after genetic counseling. To secure a varied sample, participants were recruited from all cancer genetic clinics in Norway, and the selection was based on age, gender, and risk of having a BRCA pathogenic variant. Among the 34.9% (61/175) of participants who consented for individual interview, a selected subgroup (16/61, 26%) shared their experience through in-depth interviews via video. The semistructured interviews covered the following topics: usability, perceived usefulness, trust in the information received via the chatbot, how Rosa influenced the user, and thoughts about future use of digital tools in health care. The transcripts were analyzed using the stepwise-deductive inductive approach. Results: The overall finding was that the chatbot was very welcomed by the participants. They appreciated the 24/7 availability wherever they were and the possibility to use it to prepare for genetic counseling and to repeat and ask questions about what had been said afterward. As Rosa was created by health care professionals, they also valued the information they received as being medically correct. Rosa was referred to as being better than Google because it provided specific and reliable answers to their questions. The findings were summed up in 3 concepts: “Anytime, anywhere”; “In addition, not instead”; and “Trustworthy and true.” All participants (16/16) denied increased worry after reading about genetic testing and hereditary breast and ovarian cancer in Rosa. Conclusions: Our results indicate that a genetic information chatbot has the potential to contribute to easy access to uniform information for patients at risk of hereditary breast and ovarian cancer, regardless of geographical location. The 24/7 availability of quality-assured information, tailored to the specific situation, had a reassuring effect on our participants. It was consistent across concepts that Rosa was a tool for preparation and repetition; however, none of the participants (0/16) supported that Rosa could replace genetic counseling if hereditary cancer was confirmed. This indicates that a chatbot can be a well-suited digital companion to genetic counseling.

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  • Patients were not completely satisfied with CAs due to lacking customisation.

    “limitations such as insufficient customisation, lack of empathy, and defects in understanding free-input questions were noted.”

    From The Usability and Experience of Artificial Intelligence‐Based Conversational Agents in Health Education for Cancer Patients: A Scoping Review (2026) · cites this paper as Siglen et al. 2023

    The Results (Emerging Concepts; page unavailable) report participants’ concerns about Rosa’s lack of empathy and its difficulty understanding self-composed questions. The Introduction (Background; page unavailable) says personalized communication was not included, but the paper does not clearly say patients were dissatisfied because of insufficient customization; the Discussion (Principal Findings) instead describes an overall positive attitude toward Rosa. (LLM, conf=0.83)

    Experimental — accuracy not yet measured
  • Patients reported that CAs had an unstable understanding of self-written questions, failing to accurately provide the information they expected.

    “During interaction with CAs, patients reported that CAs had an unstable understanding of self-written questions, failing to accurately provide the information they expected (Siglen et al. 2023).”

    From The Usability and Experience of Artificial Intelligence‐Based Conversational Agents in Health Education for Cancer Patients: A Scoping Review (2026) · cites this paper as Siglen et al. 2023

    The Results (Emerging Concepts; page not available) say several interviewees reported that Rosa inconsistently understood self-composed questions and switched to suggested readings. The Discussion (Principal Findings; page not available) reports a high fallback rate for open-ended questions, but does not establish that the information Rosa provided was inaccurate or consistently failed to meet patients’ expectations. (LLM, conf=0.82)

    Experimental — accuracy not yet measured
  • People at high risk for cancer felt comforted after acquiring cancer-related knowledge through CAs before genetic counselling.

    “People at high risk for cancer felt comforted after acquiring cancer-related knowledge through CAs before genetic counselling (Siglen et al. 2023).”

    From The Usability and Experience of Artificial Intelligence‐Based Conversational Agents in Health Education for Cancer Patients: A Scoping Review (2026) · cites this paper as Siglen et al. 2023

    In Results > Emerging Concepts, one participant who used Rosa before counseling said its information helped her feel calm and made the situation less difficult. Results > Participant Characteristics says only 1 of 16 participants downloaded Rosa before seeing the counselor; others described wanting earlier access or finding Rosa comforting alongside counseling. The claim overstates the evidence for people feeling comforted specifically after using a chatbot before counseling. (LLM, conf=0.88)

    Experimental — accuracy not yet measured
  • Five studies found patients had few barriers to interacting with CAs.

    “Five studies found patients had few barriers to interacting with CAs (Goertz et al. 2023;Qiu et al. 2021;Siglen et al. 2023;Tawfik et al. 2023;Visvanathan et al. 2023).”

    From The Usability and Experience of Artificial Intelligence‐Based Conversational Agents in Health Education for Cancer Patients: A Scoping Review (2026) · cites this paper as Siglen et al. 2023

    The Results (Emerging Concepts; page unavailable) describe easy access, helpful prompts, and positive engagement with Rosa, which support the idea that patients could interact with it. But 7 of 16 participants reported communication shortcomings, including difficulty getting answers to self-composed questions, and 8 of 16 noted the lack of human touch. Describing barriers as few omits these substantial limitations. (LLM, conf=0.83)

    Experimental — accuracy not yet measured
  • Patients felt that CAs resembled talking to a nurse because their knowledge base was based on global consensus, expert guidelines, and professional knowledge rather than mixed internet information.

    “Due to CAs' knowledge base being based on global consensus, expert guidelines, and professional knowledge, rather than the mixed information available on the internet, patients felt that it resembled talking to a nurse (Siglen et al. 2023).”

    From The Usability and Experience of Artificial Intelligence‐Based Conversational Agents in Health Education for Cancer Patients: A Scoping Review (2026) · cites this paper as Siglen et al. 2023

    The Results (Emerging Concepts; page not provided) say participants trusted Rosa because health care personnel wrote its information, and some felt its language resembled talking to a nurse or physician. The paper does not establish that Rosa’s knowledge base drew on global consensus or expert guidelines, or that patients made this comparison because internet information was mixed. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

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Authors
Siglen, E., Vetti, H. H., Augestad, M., Steen, V. M., Lunde, Å., & Bjorvatn, C.
Affiliations
  • Haukeland University Hospital (NO)
  • VID Specialized University (NO)
  • University of Bergen (NO)
Corresponding author
Siglen, Elen
Venue
Journal of Medical Internet Research
Published
2023-09-01
Volume
25
Pages
e46571
ISSN
1438-8871 (ISSN-L)
OpenAlex
W4385059386
Cited by
33
References
32
Citations by year
2026: 13 · 2025: 10 · 2024: 10
FWCI
5.48
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Journal of Medical Internet Research (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • NORA - Norwegian Open Research Archives (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • NORA - Norwegian Open Research Archives (submittedVersion, other-oa)
Funders
Haukeland Universitetssjukehus
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
  • Health Sciences › Medicine › Health Informatics › Artificial Intelligence in Healthcare and Education
  • Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
Keywords
chatbots, genetic counseling, BRCA testing, hereditary breast and ovarian cancer, genetic information, patient trust, perceived usefulness, usability, digital health tools, patient experience, in-depth interviews, qualitative interviews
MeSH terms
Female, Genetic Testing, Humans, Ovarian Neoplasms, Genetic Predisposition to Disease, Rosa, Qualitative Research

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