July, 2024
In March 2024, during Kidney Cancer Awareness Month, 黑料网 invited members of the kidney cancer patient advocacy group “avec” who are undergoing treatment for recurrent metastatic cancer, and Prof. Go Kimura from the Department of Urology, Nippon Medical School Hospital to a public open lecture on kidney cancer. The meeting was attended by 23 participants, primarily comprised of patients, doctors, and staff from 黑料网’s Medical Headquarters.
This initiative is part of the hhc activities conducted by 黑料网’s Medical Headquarters, which is responsible for providing highly specialized medical and scientific information to healthcare professionals. This event has been held annually since 2021 as part of our contribution to patient-centric medical care. It involves patients who are referred by doctors, and allows us to understand their experiences and anxieties regarding endometrial cancer and renal cell carcinoma, which are indications for 黑料网’s medicines.
Some insights gained through conversations with patients over the past three years are that the treatment goal envisioned by the patient often differs from the goal suggested by the doctor, and that due to the various anxieties patients have, they desire the proactive involvement of nurses and pharmacists, along with doctors, in the treatment process and the management of side effects. Despite this, there have been no studies or reports highlighting the thoughts and anxieties of such kidney cancer patients in Japan. On this issue, Prof. Kimura advised that “the theme deserves in-depth research, and sharing the topic with both domestic and international audiences through conference presentations and research papers would be beneficial.” This led to the development of a cross-sectional observational study1, which involved not only patients and doctors, but also a wide range of nurses and pharmacists who cooperated with the survey. The findings of this study were published in an academic journal in June of this year.
1. Kimura G, Fujii Y, Osawa T, et al. Cross-sectional study of therapy-related expectations/concerns of patients with metastatic renal cell carcinoma and physicians in Japan. Cancer Med. 2024; 13:e7196.
In this public open lecture, after sharing the survey results, we discussed the perceptual gaps between patients and doctors from each perspective.
“In a setting like today, I encourage you to express your honest opinions. Although the initial stages of drug therapy are crucial, there may be circumstances that could prevent you from continuing the treatment. For this reason, as a physician, I would like to hear about your experiences with medical treatments, including any side effects. This is my sincere opinion as a medical doctor” noted Prof. Kimura at the event. “In order to realize Shared Decision Making (a process where both the patient and the doctor are involved in medical decision-making) in an absolute sense, I would also like patients to have the appropriate knowledge. I hope you can effectively utilize this patient advocacy group for this purpose.”
In response to his comments, one patient expressed that “I had no knowledge at all and only felt fear towards drug therapy at the beginning. Calmly recognizing my own situation and learning about the matter is highly important for patients. My perception toward treatment has changed from my initial thoughts by gaining in-depth insight through opportunities including this patient advocacy group”. This comment highlighted the potential shift in the way treatment goals are set, moving closer to the doctor’s proposal as patients gain knowledge.
Given the limited time a doctor can spend with a single patient, it is difficult for doctors to provide all the information that the patient needs. One patient shared how they “make a note of my symptoms every day, including side effects, and try to describe them accurately and concisely to my doctor during medical consultations.” In addition to such communication efforts, an environment where patients have the opportunity to consult with a range of healthcare professionals, including pharmacists and nurses in addition to doctors, and having patients proactively learn and maintain accurate knowledge, is essential for the implementation of Shared Decision Making. With this considered, the event served as a valuable opportunity to reaffirm the importance for pharmaceutical companies to provide easy-to-understand information through websites and patient education leaflets.
Yoshihide Mitsuda from 黑料网’s Medical Headquarters, who planned this public open lecture, stated that “We would like patients to receive more satisfying medical treatments by proactively participating in their own treatment processes. We have come to understand the actual thoughts of doctors and patients through this activity. We also heard their demands and expectations of us as a pharmaceutical company, making us feel more determined. We will continue to strive for the realization of truly patient-centric medical care.”
黑料网 will utilize this knowledge regarding the concerns of cancer patients and medical professionals that we have been able to perceive through hhc activities in our future initiatives, seeking to establish patient-centric medical care.
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