Introduction: Particularly in genetics, former results can gain new meaning in the course of time. This raises questions about when professionals should recontact patients with new information. The aim of this focus group study is to clarify how different stakeholders in oncology think about the extent and limits of a duty to recontact.
Materials and methods: One focus group with oncology patients (n = 12) and two groups with healthcare professionals (total n = 13) were conducted. In general, there was support for recontacting patients. The scope and extent of this duty was, however, perceived differently. Differences and similarities on the following six contextual factors are discussed: information features, costs and efforts, personal preferences, who is contacted, clinic or research setting, and time.
Discussion: Oncology patients were clear in their wish to receive updates while the professionals were more hesitant to consider recontact as a standard of care. This is not surprising as recontacting patients with new information would mean a shift from a patient-initiated approach toward an information-initiated approach. This entails a different way of offering healthcare. Furthermore, the question is not only what professionals' responsibilities are, but how to design a system that complies with patients' wishes to receive updates.
Keywords: DNA sequencing; Oncology; cancer care; ethics; focus groups; genetics; qualitative study; recontact.
In genetics, new information can sometimes change the interpretation of past results. This raises the question of when doctors should reach out to patients with updated information. A study was done to understand how different people involved in cancer care feel about this responsibility. The study included one group of cancer patients (12 people) and two groups of healthcare professionals (13 people total).Overall, there was support for the idea of recontacting patients with new information, but opinions varied on how and when this should happen. The study looked at six key factors: the type of information, costs and efforts involved, personal preferences, who should be contacted, whether the setting is a clinic or a research environment, and the timing.Patients generally want to be updated with new information, but healthcare professionals were more cautious about making this a standard practice. This hesitancy is understandable because it would change the way care is provided—from patients asking for updates to doctors proactively providing them. The study suggests that it’s important not only to define the responsibilities of healthcare professionals but also to figure out how to create a system that meets patients’ desires to be kept informed.