Letter: Two Practices to Improve Informed Consent for Intraoperative Brain Research.

Abstract

To the Editor: We read with great enthusiasm the paper by Peabody et al1 discussing the challenges of the informed consent for clinical research in the context of intraoperative brain research. This is a crucial ethical challenge requiring deep reflexion in the current environment within the neurosurgical practice. The authors highlight the heterogeneous impact and retention of the information provided during the consent process as well the unique place occupied by the relational dimension between the surgeon and the patient during this process. They suggest the involvement of a patient's advocate and reconsent during awake craniotomy (if applied) to overcome some of the abovementioned limitations. At our center, we have established a dedicated neuro-oncology preoperative assessment clinic for discussing the diagnosis and the treatment plan with both patients and their relatives.2 We strongly agree that patient's relatives should be involved in the decision-making process from very early stages to support the patient to take the best informed decisions for himself. The introduction to potential research programs is performed by the responsible neurosurgeon although the research consent process is independent and performed by the research team. Nevertheless, the responsible neurosurgeon is at the center of the consent process given the personalized relational dimension outlined by Peabody et al1 and unique relationship between the surgeon and the patient, particularly in the setting of the awake craniotomy. A point that is worthwhile mentioning is how the research-derived information can help the clinical consent process. At our institution, we performed extensive preoperative mapping that is explained to the patients as part of their consent process.3,4 This significantly improves their understanding about the procedure, particularly the benefits and risks involved.5 Therefore, there is an active interaction between the clinical and research consent processes. Although they are independent in their nature, the information provided by one can facilitate the understanding of the other and promote a more informed decision and potential involvement in both treatment and research processes. Patient information for patients with cancer is a vital part to personalized informed consent6 and forms a national measure to hold UK oncology centers accountable. According to the National Cancer Patient Experience Survey in the United Kingdom,7 89.4% of patients, who underwent surgery for cancer, said that before their treatment started, they had the information they needed in a way they could understand. It demonstrated that although the experience was good, we still had more room for improvement and innovation in the way we educate patients and make them understand regarding their disease process. Different strategies have been used to improve the consent form process, such as personalized 2-dimensional and 3-dimensional imaging available during consent process8 which is aligned with the General Medical Council in UK recommendations in their principles of decision making and consent.9 Thus, pushing the boundaries with innovative technology that is patient friendly promoting positive patient experience would act as an important process in the armamentarium for the current and future neurosurgeons. The increase utilization10 and recent advances in intraoperative neuromonitoring and mapping paved the way to a better understanding of the mechanisms underlying the brain function. Despite being independent processes, clinical treatment and research have a dynamic interaction where the neurosurgical team has a pivotal role in integrating the information provided. We could not agree more that the patient is at the center of all the decisions made even at the time of surgery during awake procedures.1 The challenge to the surgical teams is to provide constantly updated information to allow the best decision-making process to the patients and their advocates before surgery and to the patient himself during the awake procedure.