Investigator

Elen Siglen

genetic counselor · Haukeland Universitetssjukehus, Western Norway Familial Cancer Center

ESElen Siglen
Papers(2)
Patients' and healthc…Evaluation of the Ros…
Collaborators(7)
Hildegunn Høberg VettiCathrine BjorvatnÅshild LundeVidar M SteenAnita LyssandTone Dahl‐MichelsenMirjam Augestad
Institutions(3)
Vid Specialized Unive…University Of BergenHaukeland University …

Papers

Patients' and healthcare professionals' experiences with implementing the Rosa chatbot in mainstream genetic testing for hereditary breast and ovarian cancer

Abstract Mainstream genetic testing (MGT) refers to genetic testing conducted at the time of a cancer diagnosis without undergoing comprehensive genetic counseling. MGT has been the standard of care for patients with breast or ovarian cancer in Norway for several years. The aim of this study is to explore how newly diagnosed patients with breast or ovarian cancer and healthcare professionals' (HCPs), experience the use of the Rosa chatbot in mainstream genetic testing (MGT) and explore potential barriers to the implementation of chatbots in MGT. We conducted a qualitative study using semi‐structured interview guides with selected patients and HCPs. The interviews were done either: in‐person, over the digital platform Teams, or over the telephone, depending on the participants' wishes. We chose the Stepwise‐Deductive Inductive approach for analyzing the transcripts. Both patients and HCPs viewed the Rosa chatbot positively, describing it as user‐friendly, useful, accessible, safe, professional, and trustworthy. They reported that the volume and complexity of information during MGT could be overwhelming and viewed the chatbot as a trustworthy resource for patients to revisit at their own pace, supporting informed decision‐making after a positive genetic test result. However, concerns were raised about potential misunderstandings, the impersonal nature of digital communication, and the risk of reduced patient–provider interaction, which together were perceived as an emotional barrier to integrating chatbots into genetic counseling practice.

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

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.

8Works
2Papers
7Collaborators
Ovarian NeoplasmsBreast NeoplasmsGenetic Predisposition to Disease

Positions

2005–

genetic counselor

Haukeland Universitetssjukehus · Western Norway Familial Cancer Center

Education

2004

Master in genetic counseling

University of Bergen · Social Sciences