Exploring Resource Sharing behaviors in an Online Ovarian Cancer Community (Preprint)

BACKGROUND Online health communities (OHCs) provide ovarian cancer (OvCa) patients, survivors, and their caregivers assistance beyond their traditional support channels. OvCa OHC promotes connection and exchange information among users who had similar experiences. This exchange of information often leads to resource sharing amongst users, as web links within online communities. OBJECTIVE The aim of this study is to determine if any of OvCa OHC users’ resource sharing behaviors are associated with the relevance of these resources. Three resource sharing behaviors were considered: types of resource shared, the purpose of sharing the resource and OHC users’ reactions to resource sharing METHODS Using a retrospective design, data were extracted from the National Ovarian Cancer Coalition (NOCC) discussion forum. Resource relevance was categorized to three levels (relevant, partially relevant and not relevant). Resource sharing behaviors were identified through manual content analysis. The chi-square test was used to evaluate associations between resource relevance and resource sharing behaviors RESULTS Among the resources shared, 49.43% were identified as relevant, 29.54% were partially relevant and 22.16% were not relevant. From the investigated resource sharing behavior, the study established a significant association between types of resource shared (X2=33.2771, p<0.05) and purpose of resource sharing (X2 =22.9210, p<0.05) with resource relevance (based on chi-square test of independence). Types of resource shared revealed that health consumer materials including health news and health organizations had significantly more relevant resources. Patient educational materials and patient generated resources were more significantly related to partially relevant and irrelevant resources respectively. Health professional materials including academic literature were shared a few times but have significantly more relevant resources. Purpose of sharing, including additional readings and pointing to resources, had significantly more relevant resources, while subjects for discussion and to stay connected did not have any relevant resources shared. CONCLUSIONS The associations found between the resource sharing behaviors and relevance of these resources can help in collect possible relevant resources from these forums along with their information needs on a large scale through automation. The study also reveals, when an intervention is required for handling the needs of OvCa OHC users

Building a Cancer Coalition: A co-design framework for evaluating regionalism in the South Pacific

Background Cancer is a significant problem for the South Pacific region due to a range of complex and unique health challenges caused by shared social, environmental and economic factors. Currently gaps in diagnosis, treatment and palliative care are significant, and while governmental commitment is strong, economic constrains limit health system strengthening. Collaboration, alliances and partnerships in cancer control have been successful in resource constrained settings. A regional approach has therefore been recommended as an effective solution to addressing many of the challenges for cancer control in the South Pacific. However, comprehensive and appropriate information detailing how to effectively scope and establish a multi-national or regional coalition is scarce. This study therefore aimed to 1) create a Coalition Development Framework, and 2) use the Framework to co-design a South Pacific Cancer Control Coalition through consultation with key cancer control stakeholders working within Fiji, New Caledonia, Papua New Guinea, Samoa and Tonga. Results Analysis of the consultations with key cancer control stakeholders identified overwhelming appetite and support for a South Pacific Cancer Control Coalition. This paper details the following six coalition development outputs: coalition design and purpose, strategic imperatives, structure, South Pacific foundations, barriers and facilitators to coalition establishment and ongoing operations, priorities for action. Concurrent evaluation of the Coalition Development Framework using theory of change revealed the framework to be an effective mechanism to drive engagement, discovery, unification and action in alliance-building. Conclusions A regional Coalition to drive cancer control in the South Pacific has significant support among key Pacific stakeholders. Likewise, design and scope of the Coalition has been synthesised and mapped to guide feasible and appropriate establishment. Importantly our results also describe the effective implementation of a Coalition Development Framework in an applied setting, to guide future use. If momentum is continued, and a regional South Pacific Coalition established, the benefits in reducing the burden of cancer within the region will be substantial.

Toward Optimization of Cancer Care in Sub-Saharan Africa: Development of National Comprehensive Cancer Network Harmonized Guidelines for Sub-Saharan Africa

PURPOSE Standard treatment guidelines improve patient outcomes, including disease-specific survival, in cancer care. The African Cancer Coalition was formed in 2016 to harmonize cancer treatment guidelines for sub-Saharan Africa. METHODS The African Cancer Coalition collaborated with the National Comprehensive Cancer Network (NCCN) and the American Cancer Society to harmonize 46 cancer treatment guidelines for use in sub-Saharan Africa. Harmonization for each guideline was completed by a group of approximately 6-10 African cancer experts from a range of specialties and with representation across resource levels. Each working group was chaired by an African oncologist and included a member of the appropriate NCCN guidelines panel. Treatment recommendations from the parent guidelines were distinguished as options that are generally available and should be considered standard care in most of the region or as highly advanced options for which cost or other resources may limit widespread availability. Additional recommendations specific to sub-Saharan Africa were added. RESULTS The NCCN Harmonized Guidelines for sub-Saharan Africa, available for download on the NCCN website and mobile application, provide flexible recommendations appropriate for the range of resources seen in African cancer programs, from private comprehensive cancer centers to resource-constrained public hospitals. IBM (Armonk, NY) has developed a digital interface—the Cancer Guidelines Navigator—that allows oncologists to access the treatment recommendations for the first five guidelines through an interactive web-based application. CONCLUSION Harmonized guidelines that reflect the diversity of resource levels that characterize the current state of clinical care for cancer in Africa have the potential to fill a crucial gap in efforts to standardize and improve cancer care in Africa.

The World Ovarian Cancer Coalition Every Woman Study: identifying challenges and opportunities to improve survival and quality of life

IntroductionWith the global incidence of ovarian cancer set to rise by 55% to 371 000 per year by 2035, current 5-year survival rates below 50%, and 15% of women with ovarian cancer dying within 2 months of diagnosis, urgent action is required to improve survival and quality of life.ObjectiveTo deal with the evidence gap relating to the experience of women with the disease around the globe and identify opportunities to drive progress.MethodsThe study included a review of global trends in incidence, mortality, and survival (October 2017); qualitative interviews with women and clinicians in 16 countries (December 2017); and an online survey for women available in 15 different languages (open for 2 months, March to early May 2018). Women were eligible to participate if they had been diagnosed in the previous 5 years and were proficient in one of the 15 languages offered.ResultsA total of 1531 women from 44 countries took part in the analysis. On average, 69.1% of women were not aware of ovarian cancer before their own diagnosis, varying from 50.9% (Hungary) to 86.4% (Brazil). A total of 78.3% of symptomatic women sought medical help, varying from 62.8% (Japan) to 87.7% (UK). Fewer than half of the women visited a doctor within 1 month (46.3%) of experiencing symptoms, varying from 38.5% (USA) to 77.3% (Germany), and a quarter of women waited 3 months or more. On average, 43.2% of women were diagnosed within 1 month of visiting a doctor, ranging from 30% (UK) to 62.3% (Italy). The average estimated time from experiencing symptoms to diagnosis was 31 weeks, but this ranged from 21.3 (Germany) to 39.7 (Brazil). Rates of post-diagnosis genetic testing ranged from 5.0% (Japan) to 79.1% (USA). Clinicians indicated that access to specialist treatment in high-volume centers varies greatly by country and region.ConclusionThe findings of this study identify some of the major challenges and opportunities to improve the time to diagnosis and management of women with ovarian cancer. These problems vary widely by country, and reducing the variability is an important first step towards improving outcomes for women with ovarian cancer.