Editing Cancer Beacon

==Introduction==

Cancer Beacon is a project funded by [https://health.ec.europa.eu/funding/eu4health-programme-2021-2027-vision-healthier-european-union_en EU4Health] with the objective of mapping oncologic data across all sites under the [https://www.oeci.eu/ Organisation of European Cancer Institutes (OECI)]. The project will impact four main groups of stakeholders, namely:

# '''Patients''': Cancer Beacon will provide patients with information on the best Cancer Centers where they can get the latest treatments and diagnostic methods.
# '''Researchers''': Cancer Beacon will aggregate information on datasets that might be available across Cancer Centers in the EU, increasing collaboration and maximizing the potential for scientific discovery.
# '''Policymakers''': Cancer Beacon will spread policy reports across the EU, also increasing the collaboration among individuals dedicated to improving the care of cancer patients across the EU.
# '''Providers''': Cancer Beacon will act as a hub so that providers and clinical experts can have a fruitful exchange regarding difficult cases and the latest evidence-based information.


The following sections list the main fields Cancer Beacon is collecting for each Oncology Center.

== Data fields collected by Beacon ==

Cancer Beacon only collects publicly available information, compiling it into a central, publicly available repository that can be edited by the general public. Of importance, Beacon does not gather any patient information or otherwise sensitive data, but instead focuses exclusively on which data characteristics and specific fields are collected within each Oncology Center and their respective regions or countries. The fields were chosen based on qualitative interviews with four main stakeholder groups: researchers, patients, providers, and policymakers. These fields are described below:

==='''Researchers'''===
* Electronic health information: general characteristics including overall field categories, times since the system has been in place, and the overall setting as defined in the [https://www.strobe-statement.org/download/strobe-checklist-cohort-case-control-and-cross-sectional-studies-combined STROBE reporting guideline checklist]. Publications previously using these databases are also published so that the authors can be contacted.

* Trials and cohort studies: this information is automatically gathered from the [https://www.clinicaltrialsregister.eu/ EU Clinical Trials Register] and [https://clinicaltrials.gov/ clinicaltrials.gov], along with the respective trial page description where contact information for trial coordinators and other points of contact can be found.
* Cancer registries at the regional or national level: field categories, overall registry goals and setting, previous publications along with contact information for researchers with access to the data.
* Research publications: link to publications from researchers from each Oncology Center, specifying publications with contact information on researchers.

==='''Patients'''===
* Trials available at hospitals close to their residence: the information is provided along links to pages with contact information on trial coordinators as well as information on how to enroll in a given study. All information is translated to all official country languages using automated translation tools, and provided in lay rather than technical language.
* Novel therapies and diagnostic methods: this information is provided along with links to pages from the Oncology Center providing more information as well as clinical points of contact. All information is also provided in all official country languages, using lay language.
* Patient associations: advocacy groups focused on cancer that can provide patients with information on multiple aspects related to screening, treatment, palliative care, well-being and quality of life, among other topics. 

==='''Providers'''===
* Experts: pages linking to contacts with clinical experts within each Oncologic Center, so that other providers can reach out to them in search of a second opinion regarding difficult cases. 
* Open educational meetings: links are provided to open educational meetings where clinicians from other centers can participate through video conferences. These meetings include Grand Rounds, journal clubs, among other Cancer Center-specific resources not sharing private patient information.

==='''Policymakers'''===
* Clinical practice guidelines: links to public drafts of clinical practice guidelines published by national or transnational organizations, along with links to the main panel participants contributing toward those guidelines. 
* Policy reports: links to any policy reports addressing issues such as access to care and equity, public health, global health, healthcare services and quality, health insurance, pharmaceuticals, the impact of COVID-19, telehealth, medical and humanitarian aid, among others. Links to contact information for those contributing to these reports are also provided.

== Countries Cancer Beacon ==

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