JMIR Publications

JMIR Cancer

Patient-Centered Innovations, Education and Technology for Cancer Care and Cancer Research

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Journal Description

JMIR Cancer (JC) is a new peer-reviewed journal with a focus on education, innovation and technology in cancer care and cancer research, as well as in participatory and patient-centred approaches. A sister journal of the Journal of Medical Internet Research (JMIR), a leading eHealth journal (Impact Factor 2015: 4.532), the scope of JC is broader and includes non-Internet approaches to improve cancer care and cancer research.

We invite submission of original research, viewpoints, reviews, tutorials, case studies, and non-conventional articles (e.g. open patient education material and software resources that are not yet evaluated but free for others to use/implement). 

In our "Patients' Corner", we invite patients and survivors to submit short essays and viewpoints on all aspects of cancer, but in particular suggestions on how to improve the health care system, and suggestions for new technologies, applications and approaches (no article processing fees).

Articles published in JC will be submitted to PubMed and Pubmed Central. JC is open access and all articles are published under a Creative Commons Attribution license.

 

Recent Articles:

  • CANKADO. Image sourced and copyright owned by authors.

    eHealth in Modern Patient-Caregiver Communication: High Rate of Acceptance Among Physicians for Additional Support of Breast Cancer Patients During Long-Term...

    Abstract:

    Background: Lack of adherence and compliance with drug regimens among breast cancer patients represent substantial problems in oral therapies, leading to significant impacts on mortality. Where other systems have failed, electronic health (eHealth) could be a possible solution to improve medication intake, along with the doctor-patient relationship. Initial results from studies concerning new interventions for therapy support are promising, but reports suggest that general acceptance of new treatment support tools is needed among patients and physicians alike. Objective: The aim of this study was to investigate the actual use of the Internet and other modern media among physicians involved in breast cancer treatment. Methods: Using a standardized questionnaire, actual utilization of new media among physicians was analyzed. Internet-related behaviors in private, as well as in business life, were investigated. Attention was focused on physicians’ opinions regarding modern eHealth tools and how patients could be best supported to enhance adherence. Results: A total of 120 physicians, all participating in breast cancer care, completed the questionnaire (median age 41 years). Almost all participants (99.2%, 119/120) used the Internet for general purposes and 98.3% (118/120) used it for medical issues as well. Virtually all medical professionals (99.2%, 119/120) reported that they owned a computer, while more recently invented technologies such as tablets and smartphones were owned by 31.9% (38/119) and 73.1% (87/119), respectively. The Internet was favored by 66.4% (79/119) of the physicians in our survey as a source for patient support; 71.2% (84/118) would also favor modern media for side effect registration. Based on our analysis, the most frequent Internet-utilizing physicians were characterized by age <60, worked in a hospital, and were employed as a junior physician. Conclusions: This study demonstrated a high usage of Internet-related technologies among physicians, indicating that the use of eHealth for advanced and individualized support in breast cancer care is a promising addition to treatment management. Such technologies have the potential to enhance adherence and compliance in therapy among cancer patients.

  • Image Source: Making Strides Against Breast Cancer balloon, copyright, Nesbitt_Photo.
http://tinyurl.com/hab8hcw, Licensed under Creative Commons Attribution cc-by 2.0 https://creativecommons.org/licenses/by/2.0/.

    EHealth Acceptance and New Media Preferences for Therapy Assistance Among Breast Cancer Patients

    Abstract:

    Background: Electronic health (eHealth) and mobile communication-based health care (mHealth) applications have been increasingly utilized in medicine over the last decade, and have facilitated improved adherence to therapy regimens in patients with chronic conditions. Due to the long duration of breast cancer therapy, and the long course of disease in metastatic breast cancer, a need for more intensified physician-patient communication has emerged. Various support mechanisms, including new media such as mHealth and eHealth, have been proposed for this purpose. Objective: The aim of this study was to analyze the correlation between sociodemographic factors, as well as health status of breast cancer patients, and their current utilization of new media, or their willingness to use Internet and mobile phone apps for improvement of therapy management. Methods: The survey for this study was conducted anonymously during the 2012 Mamazone Projekt Diplompatient meeting (Augsburg, Germany), which hosted approximately 375 participants per day. A total of 168 questionnaires were completed. The questionnaire aimed to assess sociodemographic status, disease patterns, and current use of new media (ie, Internet, mobile phone, and mobile phone apps) in breast cancer patients. Habits and frequency of use for these new technologies, as well as patients’ affinity towards eHealth and mHealth tools for therapy management improvement, were investigated. Results: Almost all participants used the Internet (95.8%, 161/168), with 91.5% (151/165) also utilizing this technology for health-related issues. Approximately 23% (38/168) of respondents owned a mobile phone. When asked about their preferences for therapy assistance, 67.3% (113/168) of respondents were interested in assistance via the Internet, 25.0% (42/168) via mobile phone, and 73.2% (123/168) via call center. Patients diagnosed with breast cancer <5 years before the survey were significantly more interested in a call center than patients diagnosed >5 years before survey participation. Conclusions: The vast majority of breast cancer patients accept the Internet for therapy assistance, which indicates that eHealth is a promising medium to improve patient-physician communication. Such technologies may improve individual disease management and ultimately lead to an enhanced adherence to therapy regimens.

  • Care Planning for Cancer Patients. Image source: https://www.pexels.com/photo/person-apple-laptop-notebook-157/. License: CC0 License.

    Comparing Web-Based Provider-Initiated and Patient-Initiated Survivorship Care Planning for Cancer Patients: A Randomized Controlled Trial

    Abstract:

    Background: Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake. Objective: This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated. Methods: This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs—both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors’ Unmet Needs (CaSUN) surveys at baseline and 2 months. Results: A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors’ Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs’ value. Conclusions: Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow functions for identifying and completing SCPs—regardless of the SCP form used. Trial Registration: ClinicalTrials.gov NCT02405819; https://clinicaltrials.gov/ct2/show/NCT02405819 (Archived by WebCite at http://www.webcitation.org/6jWqcWOvK)

  • Screenshot of the home page of our research Facebook profile.

    Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment

    Abstract:

    Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients’ and relatives’ behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named “Ewing Sarcoma Awareness” that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients’ and relatives’ answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients’ and relatives’ results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients’ care requires further evaluation.

  • Computer and iPad. Image source: https://www.pexels.com/photo/notebook-working-macbook-technology-34125/.

    Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey

    Abstract:

    Background: The Internet is commonly used as a source of health information, but little is known about the Internet practices specific to cancer patients. Objective: To understand cancer patients’ use of the Internet as an informational resource and for social support. Methods: The researchers conducted a survey of 1282 patients at a comprehensive cancer center to assess frequency of Internet access and online behaviors. Results: Of the cancer patients surveyed, 1096 (85.49%) had Internet access; of those with Internet access, 953 (86.95%) reported going online at least weekly, and 747 (68.16%) reported daily online activity. Grouping Internet users by their level of online social engagement revealed that out of 1096 users, 331 (30.20%) had not sought out social connections online, 227 (20.71%) had read about experiences from other cancer patients, 410 (37.41%) had also written about their personal experiences, and 128 (11.68%) had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions: Internet use among cancer patients was common, and most patients reported that they found useful information about their cancer diagnosis online. Cancer patients who actively posted or shared content perceived more social support from the Internet than those who used the Internet solely as an informational resource or to read about other cancer patients’ experiences. Physicians have a great opportunity to direct users to quality health information on the Web.

  • Source: http://tinyurl.com/j4dvbpc, CC0 Public Domain.

    Online Versus Telephone Methods to Recruit and Interview Older Gay and Bisexual Men Treated for Prostate Cancer: Findings from the Restore Study

    Abstract:

    Background: Recently, researchers have faced the challenge of conflicting recommendations for online versus traditional methods to recruit and interview older, sexual minority men. Older populations represent the cohort least likely to be online, necessitating the use of traditional research methods, such as telephone or in-person interviews. By contrast, gay and bisexual men represent a population of early adopters of new technology, both in general and for medical research. In a study of older gay and bisexual men with prostate cancer, we asked whether respondents preferred online versus offline methods for data collection. Given the paucity of research on how to recruit older gay and bisexual men in general, and older gay and bisexual men with prostate cancer in particular, we conducted an observational study to identify participant preferences when participating in research studies. Objective: To test online versus offline recruitment demographic data collection, and interview preferences of older gay and bisexual men with prostate cancer. Methods: Email blasts were sent from a website providing support services for gay and bisexual men with prostate cancer, supplemented with an email invitation from the web-host. All invitations provided information via the study website address and a toll-free telephone number. Study tasks included respondents being screened, giving informed consent, completing a short survey collecting demographic data, and a 60-75 minute telephone or Internet chat interview. All materials stressed that enrollees could participate in each task using either online methods or by telephone, whichever they preferred. Results: A total of 74 men were screened into the study, and 30 were interviewed. The average age of the participants was 63 years (standard deviation 6.9, range 48-75 years), with most residing in 14 American states, and one temporarily located overseas. For screening, consent, and the collection of demographic data, 97% (29/30) of the participants completed these tasks using online methods. For the interview, 97% (29/30) chose to be interviewed by telephone, rather than Internet chat. Conclusions: Older gay and bisexual men, when given choices, appear to prefer a mixed methods approach to qualitative investigations. For most aspects of the study, the older men chose online methods; the exception was the interview, in which case almost all preferred telephone. We speculate that a combination of the deeply personal nature of the topic (sexual effects of prostate cancer treatment), unfamiliarity with online chat, and possibly the subject burden involved in extensive typing contributed to the preference of telephone versus online chat. Recruitment of older men into this study showed good geographic diversity. We recommend that other qualitative researchers consider a mixed methods approach when recruiting older populations online.

  • Px Healthcare. Image sourced and copyright owned by authors Danny Young-Afat et al.

    Patients’ and Health Care Providers’ Opinions on a Supportive Health App During Breast Cancer Treatment: A Qualitative Evaluation

    Abstract:

    Background: Health apps are increasingly being used in clinical care and may hold significant theoretical potential. However, they are often implemented in clinical care before any research has been done to confirm actual benefits for patients, physicians, and researchers. Objective: This study aimed to explore experiences of patients and health care providers with the use of a supportive breast cancer app during the first 6 months following diagnosis, in terms of benefits for clinical practice and research purposes. Methods: Between June 2013 and April 2014, breast cancer patients of all ages were invited shortly after diagnosis to use a supportive breast cancer app, and were followed for 6 months. Patients were asked to use the app at their own convenience. In-depth interviews were conducted regularly with patients and their medical team (ie, physicians and nurses) to evaluate their experiences. Results: A total of 15 patients aged 30-63 years participated. The medical team consisted of 7 physicians and 3 specialized breast cancer nurses. Out of the 15 patients, 12 (80%) used the app to obtain information on breast cancer and treatment. A total of 11 out of 12 patients (92%) evaluated this information as useful. All 15 patients used the app to record consultations with practitioners, and 14 (93%) found this useful. Symptom registration was used by 8 out of 15 patients (53%), and was found useful by 4 out of these 8 patients (50%). Overall, 14 out of 15 patients (93%) would recommend the app to other patients. The app, in particular the recording function, was rated as useful by 9 out of 10 medical professionals (90%), and they reported that it did not increase consultation time. These 9 professionals would recommend the app to their patients. Conclusions: This evaluation of a supportive health app shows positive experiences among patients and their medical teams. Based on experiences in this study, patients may need to be actively encouraged to regularly register symptoms within health apps to generate sufficient patient-reported app data for use in clinical practice and scientific research.

  • source URL: https://pixabay.com/en/iphone-mockup-iphone-6-phone-621707/
CC0 Public Domain
Free for commercial use 
No attribution required.

    Assessment of Cancer Survivors’ Experiences of Using a Publicly Available Physical Activity Mobile Application

    Abstract:

    Background: Regular participation in physical activity (PA) is associated with improved physical and psychosocial outcomes in cancer survivors. However, PA levels are low during and after cancer treatment. Interventions to promote PA in this population are needed. PA mobile apps are popular and have potential to increase PA participation, but little is known about how appropriate or relevant they are for cancer survivors. Objective: This study aims to (1) assess recruitment, study uptake, and engagement for a publicly available PA mobile app (GAINFitness) intervention in cancer survivors; (2) assess cancer survivors’ attitudes towards the app; (3) understand how the app could be adapted to better meet the needs of cancer survivors; and (4) to determine the potential for change in PA participation and psychosocial outcomes over a 6-week period of using the app. Methods: The present study was a one-arm, pre-post design. Cancer survivors (N=11) aged 33 to 62 years with a mean (SD) age of 45 (9.4), and 82% (9/11) female, were recruited (via community/online convenience sampling to use the app for 6 weeks). Engagement with the app was measured using self-reported frequency and duration of usage. Qualitative semi-structured telephone interviews were conducted after the 6-week study period and were analyzed using thematic analysis. PA, well-being, fatigue, quality of life (QOL), sleep quality, and anxiety and depression were self-reported at baseline and at a 6-week follow-up using the Godin Leisure Time Exercise Questionnaire (GLTEQ), the Functional Assessment of Cancer Therapy-General (FACT-G), the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue Scale Questionnaire, the Health and Quality of Life Outcomes (EQ5D) Questionnaire, the Pittsburgh Sleep Quality Index (PSQI), and the Hospital Anxiety and Depression Scale (HADS), respectively. Results: Of the people who responded to the study advertisement, 73% (16/22) agreed to participate and 100% (11/11) of the participants who started the study completed all baseline and follow-up outcome measures and the telephone interview. On average, participants used the app twice a week for 25 minutes per session. Four themes were identified from the qualitative interviews surrounding the suitability of the app for cancer survivors and how it could be adapted: (1) barriers to PA, (2) receiving advice about PA from reliable sources, (3) tailoring the application to one’s lifestyle, and (4) receiving social support from others. Pre-post comparison showed significant increases in strenuous PA, improvements in sleep quality, and reductions in mild PA. There were no significant changes in moderate PA or other psychosocial outcomes. Conclusions: All participants engaged with the app and qualitative interviews highlighted that the app was well-received. A generic PA mobile app could bring about positive improvements in PA participation and psychosocial outcomes among cancer survivors. However, a targeted PA app aimed specifically towards cancer survivors may increase the relevance and suitability of the app for this population.

  • Source and copyright: the authors.

    The Effects of Physical Activity on Health and Quality of Life in Adolescent Cancer Survivors: A Systematic Review

    Abstract:

    Background: There are numerous published controlled trials assessing the safety and the benefits of physical activity (PA) for child and adult cancer survivors. However, trials exclusively comprised of adolescent cancer survivors aged 13-19 years, who may experience different health and quality of life (QOL) effects as a function of their developmental status, are lacking. Rather, some trials have included both adolescent and child cancer survivors together. Objective: The aim of this systematic review was to synthesize the findings from randomized controlled trails (RCTs) and controlled clinical trials (CCTs) investigating the effects of PA on health and QOL outcomes in samples comprised of >50% adolescent cancer survivors to summarize the current state of evidence, identify knowledge gaps, and highlight areas in need of additional research within this population. Methods: Using a search strategy developed for this review, 10 electronic databases were searched for RCTs and CCTs that reported on the effects of PA on at least 1 health and/or QOL outcome in samples comprised of >50% adolescent cancer survivors. Results: From the 2249 articles identified, 2 CCTs met the predetermined eligibility criteria and were included in this review. Combined, 28 adolescents (of 41 participants) who were receiving active treatment participated in the 2 studies reviewed. A total of 4 health and QOL outcomes (ie, bone mass, fatigue, grip strength, QOL) were assessed pre- and post-PA intervention. Conclusions: On the basis of the 2 studies reviewed, PA appears to be safe and feasible. PA also shows promise to mitigate reductions in bone mass and might be a viable strategy to improve fatigue, grip strength, and QOL. High-quality controlled trials with larger samples exclusively comprised of adolescent cancer survivors that assess a wide range of outcomes are needed to determine the effects of PA on health and QOL outcomes in this population.

  • Source: https://www.pexels.com/photo/apple-desk-laptop-macbook-6568, CC0 Public domain; modified with image from authors.

    eHealth for Breast Cancer Survivors: Use, Feasibility and Impact of an Interactive Portal

    Abstract:

    Background: MijnAVL is an interactive portal including patient education, overview of appointments, access to the electronic medical records (EMR), patient-reported outcomes, plus feedback and physical activity support. Objective: With this study we aimed to evaluate the use, feasibility, and impact of MijnAVL among breast cancer survivors. Methods: We included survivors currently or recently treated with curative intent, who completed questions on sociodemographics, patient activation (PAM), quality of life (SF-36), and physical activity (IPAQ). MijnAVL could be used noncommittally for four months. Log data were collected retrospectively and participants completed questions on acceptability, satisfaction, and the PAM, SF-36 and IPAQ. Results: Ninety-two women (mean age 49.5 years, 59% on-treatment) participated, with a mean number of logins of 8.7. Overview of appointments (80% of participants) and access to the EMR (90%) were most frequently used and most highly valued. Average website user satisfaction was 3.8 on a 5-point scale. Although participants reported having more knowledge and experiencing more control of their situation after using MijnAVL, PAM scores did not change significantly. Three domains of the SF-36 (role functioning - emotional, mental health, and social functioning) and median vigorous physical activity improved significantly over time. The burden of MijnAVL for professionals was limited. Conclusions: User experiences were positive and exposure to MijnAVL was accompanied by improvements in three quality of life domains and vigorous physical activity. Tailored features may be needed to enhance the usefulness and efficacy of MijnAVL. Research with a controlled design is needed to confirm our findings.

  • Image Source: Produce Department, copyright Anthony Albright,
https://www.flickr.com/photos/anthonyalbright/4713106699/,
Licensed under Creative Commons Attribution cc-by 2.0 https://creativecommons.org/licenses/by/2.0/.

    Pilot and Feasibility Test of a Mobile Health-Supported Behavioral Counseling Intervention for Weight Management Among Breast Cancer Survivors

    Abstract:

    Background: Health behavior and weight management interventions for cancer survivors have the potential to prevent future cancer recurrence and improve long-term health; however, their translation can be limited if the intervention is complex and involves high participant burden. Mobile health (mHealth) offers a delivery modality to integrate interventions into daily life routines. Objective: The objective of this study was to evaluate the effects of a one-group trial with a pre-post evaluation design on engagement (use and acceptability), physiological (weight), behavioral (diet and physical activity), and other secondary outcomes. Methods: The 10-week intervention consisted of mHealth components (self-monitoring of selected diet behaviors via daily text messages, wireless devices to automatically track weight and steps) and 4 motivational interviewing–based technology-assisted phone sessions with a nonprofessionally trained counselor. Participants were overweight breast cancer survivors who had completed treatment and owned a smartphone. Weight was measured objectively; diet and physical activity were measured with brief self-reported questionnaires. Results: Ten women participated; they had a mean age of 59 years (SD 6), 50% belonged to a racial or ethnic minority group, 50% had some college or less, and 40% reported using Medicaid health insurance. Engagement was high: out of 70 days in total, the mean number of days recording steps via the wristband pedometer was 64 (SD 7), recording a weight via the scale was 45 (SD 24), and responding to text messages was 60 (SD 13); 100% of participants completed all 4 calls with the counselor. Most (90%) were very likely to participate again and recommend the program to others. Mean weight in pounds decreased (182.5 to 179.1, mean change −3.38 [SD 7.67]), fruit and vegetable daily servings increased (2.89 to 4.42, mean change 1.53 [SD 2.82]), and self-reported moderate physical activity increased in metabolic equivalent of task (MET) minutes per week (2791 to 3336, mean change 545 [SD 1694]). Conclusions: Findings support the conduct of a fully powered trial to evaluate the efficacy of mHealth as a feasible intervention modality for breast cancer survivors. Future research should employ accelerometer-based physical activity assessment and consider development of an all-in-one app to integrate devices, messaging, and educational content and other mHealth approaches to support behavioral counselors conducting weight management interventions. Trial Registration: ClinicalTrials.gov NCT02387671; https://clinicaltrials.gov/ct2/show/NCT02387671 (Archived by WebCite at http://www.webcitation.org/6hGEuttbZ).

  • Image Source: google tabletas, copyright Esther Vargas,
https://www.flickr.com/photos/esthervargasc/10459927466/,
Licensed under Creative Commons Attribution cc-by 2.0 https://creativecommons.org/licenses/by/2.0/.

    “Googling” for Cancer: An Infodemiological Assessment of Online Search Interests in Australia, Canada, New Zealand, the United Kingdom, and the United...

    Abstract:

    Background: The infodemiological analysis of queries from search engines to shed light on the status of various noncommunicable diseases has gained increasing popularity in recent years. Objective: The aim of the study was to determine the international perspective on the distribution of information seeking in Google regarding “cancer” in major English-speaking countries. Methods: We used Google Trends service to assess people’s interest in searching about “Cancer” classified as “Disease,” from January 2004 to December 2015 in Australia, Canada, New Zealand, the United Kingdom, and the United States. Then, we evaluated top cities and their relative search volumes (SVs) and country-specific “Top searches” and “Rising searches.” We also evaluated the cross-country correlations of SVs for cancer, as well as rank correlations of SVs from 2010 to 2014 with the incidence of cancer in 2012 in the abovementioned countries. Results: From 2004 to 2015, the United States (relative SV [from 100]: 63), Canada (62), and Australia (61) were the top countries searching for cancer in Google, followed by New Zealand (54) and the United Kingdom (48). There was a consistent seasonality pattern in searching for cancer in the United States, Canada, Australia, and New Zealand. Baltimore (United States), St John’s (Canada), Sydney (Australia), Otaika (New Zealand), and Saint Albans (United Kingdom) had the highest search interest in their corresponding countries. “Breast cancer” was the cancer entity that consistently appeared high in the list of top searches in all 5 countries. The “Rising searches” were “pancreatic cancer” in Canada and “ovarian cancer” in New Zealand. Cross-correlation of SVs was strong between the United States, Canada, and Australia (>.70, P<.01). Conclusions: Cancer maintained its popularity as a search term for people in the United States, Canada, and Australia, comparably higher than New Zealand and the United Kingdom. The increased interest in searching for keywords related to cancer shows the possible effectiveness of awareness campaigns in increasing societal demand for health information on the Web, to be met in community-wide communication or awareness interventions.

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  • Clinical Trial Electronic Portals for Expedited Safety Reporting: Current Issues and Desired Features

    Date Submitted: Sep 27, 2016

    Open Peer Review Period: Sep 28, 2016 - Nov 23, 2016

    Background: Use of electronic clinical trial portals has increased in recent years to assist with sponsor-investigator communication, safety reporting, and clinical trial management. Electronic porta...

    Background: Use of electronic clinical trial portals has increased in recent years to assist with sponsor-investigator communication, safety reporting, and clinical trial management. Electronic portals can help reduce time and costs associated with processing paperwork and add security measures; however, there is a lack of information on clinical trial investigative staff’s perceived challenges and benefits of using portals. Objective: The Clinical Trials Transformation Initiative (CTTI) sought to (1) identify challenges to investigator receipt and management of investigational new drug (IND) safety reports at oncologic investigative sites and coordinating centers and (2) facilitate adoption of best practices for communicating and managing IND safety reports using electronic portals consistent with the United States (US) Food and Drug Administration’s (FDA) guidance, the IND safety rule, and CTTI recommendations. Methods: CTTI, a public-private partnership to improve the conduct of clinical trials, distributed surveys and conducted interviews in an opinion-gathering effort to record investigators’ and research staff views on electronic portals in the context of the new safety reporting requirements described in the FDA’s final rule (Code of Federal Regulation 21.312). Results: The top challenge investigators/staff identified in using individual sponsor portals was remembering several, complex, individual passwords to access each site. Also, certain time-consuming tasks (e.g., downloading reports) are due to slow sites or difficulties associated with particular operating systems or software. To improve user experiences, respondents suggested that portals function independently of browsers and operating systems, have intuitive interfaces with easy navigation, and incorporate additional features that would allow users to filter, search, and batch safety reports. Conclusions: Results indicate that an ideal system for sharing expedited IND safety information is through a central portal used by all sponsors. Until this is feasible, electronic reporting portals should at least have consistent functionality. CTTI has issued recommendations to improve the quality and use of electronic portals.

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