Development of a New Tool for Better Social Recognition of Cancer Information and Support Activities Under the National Cancer Control Policy in Japan.

Under the recent trend of an increasing number of cancer survivors, there is a need to devise measures for visualization of medical care and public health programs related to cancer control, which will enable better overview of the activities at hospitals and local communities and allow various stakeholders to share the information about such activities. The aim of this study was to propose a new tool for proper implementation of cancer information and support programs provided under the national cancer control policy in Japan. Considering 5 elements reported by Handler et al (macro context, mission, structural capacity, processes, and outcomes), we conducted the focus group discussions to confirm the goals of activities of Cancer Information and Support Centers. Eventually, 2 final goals ("reduction in the number of patients/families having difficulties related to cancer" and "being able to live at ease even after diagnosis of cancer") were identified, accompanied by 5 semifinal goals and 16 prerequisite conditions needed to achieve the final goals, as well as the necessary states and the activity indicators corresponding to them. This tool was utilized by 180 (42.7%) of 422 cancer care hospitals designated by the government of Japan (designated cancer care hospitals [DCCHs]) in 2016 and by 336 (77.1%) of 436 DCCHs in 2018, which were the data at 6 months and 3 years after introduction of the tool, respectively. Thus, the tool for evaluating the Cancer Information and Support Centers' activity presented here is expected to stimulate the stakeholders involved in providing supports in various fields of each local community, to share the final goals, to evaluate the status of their achievement, and to further advance their own activities.

An exploratory study of the efficacy of medical illustration detail for delivering cancer information.

Medical illustrations are an effective means of conveying complex information about cancer to patients and laypersons. However, there are no standard criteria for creating these illustrations. This study used online exploratory research focussed on laypersons to identify the aspects of an illustration that convey the optimal degree of detail and understand these findings. Six illustrations depicting pancreatic cancer and nine depicting cervical cancer, with high, medium, and low levels of detail, were created. A total of 420 participants (male = 210, female = 210, aged 20 years and above) answered an online questionnaire about these illustrations. The results indicated that female participants tended to prefer the same illustration level that they also found most comprehensible. Younger participants (under 40 years) tended to prefer illustrations with a medium level of detail for both cancers. Older participants (40 years and above) tended to prefer illustrations with a high level of detail for both cancers. This study was unable to determine the reasons behind these preferences. However, the researchers hypothesise that older people's preference for higher levels of detail may be due to their greater concerns about cancer and because they find the illustrations to be more effective in conveying relevant information.

Creation and provision of a question and answer resource for esophageal cancer based on medical professionals' reports of patients' and families' views and preferences.

BACKGROUND: In the rapidly-progressing healthcare environment, it is essential to improve treatment quality through continuous clarification of the needs and concerns of esophageal cancer patients and their families. Effective collaboration between information providers and academic associations could help make such clarified information available. METHODS: We analyzed esophageal cancer patients' views and preferences (PVPs) using data that were previously obtained from medical staff in Japan. Based on these PVPs, we created a question and answer (Q&A) resource through collaboration with the Cancer Information Service in Japan (CISJ) and the Japan Esophageal Society (JES). RESULTS: Regarding esophageal cancer, "diet and eating behavior" was the most frequent PVP mentioned by patients and their families, followed by "treatment-related symptoms and adverse effects" and "daily life, recuperation, and survivorship." These PVPs were noted by a wide variety of medical specialties. By analyzing the PVPs, the CISJ developed 11 proposed questions and sent them to the JES, which then created answers based on evidence and clinical-practice-associated consensus. The resultant Q&A resource was uploaded to the CISJ website with mutual linkage to the JES website. CONCLUSIONS: This study showed the usefulness of collecting esophageal-cancer-related PVPs from medical staff and fostering successful collaboration between a cancer-information provider and an academic association. This arrangement may represent a model case for developing a sustainable system that can satisfactorily respond to PVPs regarding other cancers and/or issues.

Exploring types of conversational agents for resolving cancer patients' questions and concerns: Analysis of 100 telephone consultations on breast cancer.

OBJECTIVE: This study was conducted to investigate the types of conversational agents (CA) that can help address questions and concerns ("lay topics" [LTs]). METHODS: We analyzed audio recordings of telephone consultations with 100 breast cancer patients and their families. (1) We identified the content and mode of expression of LTs about breast cancer raised during actual telephone consultations. (2) We checked for the presence of clue information (CI) that can help patients resolve their LTs. RESULTS: None of the 805 LTs of the 100 callers were the same. Treatment-related questions occurred in 70 of the 100 consultations. CIs were present in 52.5% of the LTs. CONCLUSION: The results suggest that chatbots (a type of CA) that offer CIs are more feasible than chatbots that answer each question directly in cancer consultations. Moreover, it is difficult to answer questions directly because preparing answers to all LTs in a breast cancer consultation is challenging owing to LT differences. Therefore, preparing high-quality CIs focused on treatments is required. PRACTICE IMPLICATIONS: An increasing number of cancer patients are seeking information to resolve their LTs. CAs can help supplement the limited human resources available if they are supplied with appropriate CIs.

Users' evaluation of Japan's cancer information services: process, outcomes, satisfaction and independence.

BACKGROUND: Cancer information service (CIS) programmes are becoming increasingly important because patients need to obtain appropriate information and take an active role in their treatment decisions. Programme evaluation is required to determine the level of satisfaction and quality of experiences of users. The purpose of this study is (1) to identify users' evaluation of CIS programmes by both satisfaction and outcomes that reflect the quality of experience and impact of using the CIS, (2) to examine the related factors of these evaluation outcomes and (3) to analyse the differences of those relations between patients and families. METHOD: The self-reported questionnaire was answered by 447 patients and 216 families of patients who used Cancer Information Support Centres (CISCs) at 16 designated cancer hospitals from January 2016 to April 2016. We developed 12 evaluation items, including satisfaction, experience and the impact of using CISC. RESULTS: Respondents evaluated the CISC highly, especially in terms of overall satisfaction, followed by the counselling process. Immediate access to CISC was the strongest factor affecting outcomes. Patients who wanted to consult about 'disease or symptoms' or 'had no specific problem' tended to provide high scores for some outcomes, but those who wanted to consult about a 'financial problem' or 'discharge or care at home' provided negative scores. These trends were also observed in families but to a more limited extent. CONCLUSION: Users' evaluation of CISCs was sufficiently high in terms of overall satisfaction, showing reasonable scores in outcome levels. Immediate access was the strongest factor affecting outcomes and topics of consultation more directly affected evaluation by patients than by families. The distribution of the scores of the measures and related factors was reasonable. The 12-item measurement tool employed in this study seems to be useful for quality monitoring of the CIS.

New Approach for Collecting Cancer Patients' Views and Preferences Through Medical Staff.

PURPOSE: It is crucial for health professionals to understand patients' and families' views and preferences (PVPs) to enhance their adherence to treatments and subsequent satisfaction. Regularly and consistently collecting comprehensive information on the needs and concerns of patients/families and utilizing the information is vital for improving clinical practice and the healthcare environment. As an initial approach, this study aimed to develop a new system for appropriately collecting PVPs regarding cancer from nationwide medical staff and consider the potential utilization of PVPs in clinical practice. METHODS: Web-based anonymous surveys were conducted with medical staff in nationwide cancer care hospitals in Japan. The surveys queried the questions, values, desires, and experiences expressed by cancer patients or their families on five topics, namely two cancer sites (colorectal and esophageal cancers) and three symptoms and signs (lymphedema, urinary symptoms, and tingling/numbness/pain) within the past year. The PVPs were compared to the five topics and staff medical specialties, and those on tingling/numbness/pain were analyzed qualitatively. RESULTS: Among the 904 medical staff who responded to this survey, the PVPs encountered by the staff differed according to the topic and staff medical specialty. Tingling/numbness/pain was the most frequently encountered symptom, and urinary symptoms were the least encountered. Only half or fewer of the medical staff had information available regarding urinary symptoms and tingling/numbness/pain. Further, qualitative content analysis of the expressed PVPs regarding tingling/numbness/pain raised clinical questions on this topic that led to the construction of a "Questions & Answers" section on a public website in Japan. CONCLUSION: This study suggests that collecting PVPs through nationwide cancer-related medical staff might be an efficient way to understand the specific requirements of patients/families. It would also be possible to document PVP trends according to changes in the environments of patients/families by nationwide, consistent, and continuous PVP collection.

Auto-Generated Physiological Chain Data for an Ontological Framework for Pharmacology and Mechanism of Action to Determine Suspected Drugs in Cases of Dysuria.

INTRODUCTION: Patients often take several different medications for multiple conditions concurrently. Therefore, when adverse drug events (ADEs) occur, it is necessary to consider the mechanisms responsible. Few approaches consider the mechanisms of ADEs, such as changes in physiological states. We proposed that the ontological framework for pharmacology and mechanism of action (pharmacodynamics) we developed could be used for this approach. However, the existing knowledge base contains little data on physiological chains (PCs). OBJECTIVE: We aimed to investigate a method for automatically generating missing PC from the viewpoint of anatomical structures. This study was conducted to determine dysuria-related adverse events more likely to occur during multidrug administration. METHODS: We adopted a systematic approach to determine drugs suspected to cause adverse events and incorporated existing data and data generated in our newly developed method into our ontological framework. The performance of automated data generation was evaluated using this newly developed system. Suspected drugs determined by the system were compared with those derived from adverse events databases. RESULTS: Of the 242 drugs involving suspected drug-induced urinary retention or dysuria, 26 suspected drugs were determined. Of these, five were drugs with side effects not listed in drug package inserts. The system derived potential mechanisms of action, PCs, and suspected drugs. CONCLUSION: Our method is novel in that it generates PC data from anatomical structural properties and could serve as a knowledge base for determining suspected drugs by potential mechanisms of action.

Cancer information needs according to cancer type: A content analysis of data from Japan's largest cancer information website.

The provision of information about cancer is an important aspect of cancer care. Cancer information provided online is expected to meet the needs of information seekers. Whether information needs vary according to tumor site is largely unknown. We aimed to examine similarities and differences in informational needs by cancer type. Data were collected using a questionnaire administered on Japan's largest cancer information website, "Ganjoho service". A total of 2782 free descriptive responses in the period from April 2012 to December 2017 were analyzed using text-mining software. We identified the top 10 informational need contents, in order of appearance frequency, for eight tumor sites: gastric, colorectal, esophageal, lung, pancreatic, breast, cervical, and prostate cancer. Frequent information needs common to all tumor sites included symptoms, disease stages, treatments, chance of cure, recovery, metastasis, and recurrence. A need for information about diet, pain, side effects of treatments, complementary and alternative medicine was frequent for some tumor sites. Tumor site-specific information should include the following, according to cancer type: information of scirrhous carcinoma for gastric cancer; unusual feces for colorectal cancer; lung X-ray images for lung cancer; early detection for pancreatic cancer; adenocarcinoma, sexual activity, pregnancy, and childbirth for cervical cancer; breast conservation or reconstruction and triple negative cancer for breast cancer; test values and diagnosis and urinary problems for prostate cancer; and hormone therapy for breast and prostate cancer. Cancer information provided online should meet these frequent informational needs, considering similarities and differences of the information required according to tumor site.

Development of description framework of pharmacodynamics ontology and its application to possible drug-drug interaction reasoning.

Prediction of synergistic or antagonistic effects of drug-drug interaction (DDI) in vivo has been of considerable interest over the years. Formal representation of pharmacological knowledge such as ontology is indispensable for machine reasoning of possible DDIs. However, current pharmacology knowledge bases are not sufficient to provide formal representation of DDI information. With this background, this paper presents: (1) a description framework of pharmacodynamics ontology; and (2) a methodology to utilize pharmacodynamics ontology to detect different types of possible DDI pairs with supporting information such as underlying pharmacodynamics mechanisms. We also evaluated our methodology in the field of drugs related to noradrenaline signal transduction process and 11 different types of possible DDI pairs were detected. The main features of our methodology are the explanation capability of the reason for possible DDIs and the distinguishability of different types of DDIs. These features will not only be useful for providing supporting information to prescribers, but also for large-scale monitoring of drug safety.