Cancer Beacon

Welcome to the BEACON Wiki

The Cancer Care BEACON project, funded by the European Commission, is a groundbreaking initiative aimed at enhancing cancer care across the European Union by mapping cancer centers' capacities and compiling oncology datasets, among other cancer-related resources, and present them in an interactive, accessible application for all stakeholders. Designed to support patients, researchers, policymakers, and healthcare providers, the BEACON Decision-Support Application offers a comprehensive platform for informed decision-making and facilitates transatlantic collaborations and clinical trials. This concise resource empowers all stakeholders in the cancer care continuum with essential information to improve care and address disparities within the EU.

The Cancer Care Beacon Wiki is the collaborative platform where all information the BEACON project collects is stored, and it can be viewed and edited by all stakeholders. Through community effort, the Wiki aims to provide the highest-quality and accurate information about cancer care possible, and empower stakeholders to be a part of cancer care advances.

Why contribute to the BEACON Wiki?

Joining and contributing to the BEACON wiki offers a special chance for patients and hospitals to truly make a difference in cancer care.

Patients can help others by sharing their own stories and information, building a community where everyone has access to the knowledge they need.

Hospitals and providers can show off what they do best, making sure everyone knows about the great care they provide and working together to make cancer care better for everyone.

Researchers and policymakers also play a crucial role, by contributing cutting-edge findings and shaping supportive policies, they help ensure that the wiki remains a dynamic, up-to-date resource.

By adding your voice and experience, you're helping to create a place where the best ideas and treatments are shared openly, making it easier for everyone to find the help they need and for hospitals to be recognized for their hard work and dedication.

Why create an account?

Creating an account on the BEACON wiki is a crucial step for everyone involved.

For hospital staff, it's about having your identity verified by BEACON staff, which means your updates and contributions can be added directly, streamlining the process and ensuring your input is recognized promptly.

For patients, researchers, and policymakers, an account allows you to track your edits and history, giving you a clear view of your contributions and interactions within the wiki. This not only helps in maintaining the integrity of the information but also fosters a more engaged and accountable community.

Additionally, having an account enables all users to engage directly with others in the community, fostering collaboration and support among those committed to improving cancer care.

For a more personalized experience and to explore how we can support you and/or your hospital, we encourage you to reach out directly for a one-on-one meeting with our team. Message us at beaconcancer@gmail.com.

Wiki Content

Finding Your Way: Country vs. Cancer Center Pages on the BEACON Wiki

When you're looking for information on the BEACON Wiki, you'll come across two main types of pages: Country Pages and Cancer Center Pages. Let's break down what each one offers to make your search easier.

Country Pages

Think of a Country Page as the big picture of cancer care in a whole country. It's where you find general info about cancer services and policies in a specific EU country. For example, if you're interested in what's happening in France, the France Country Page will have links to all sorts of resources, from national cancer programs to databases. It's a great starting point to understand how a country is tackling cancer care.

Cancer Center Pages

Now, if you need details about a specific hospital or cancer center, that's where Cancer Center Pages come in. These pages zoom in on individual places, like the Charité Comprehensive Cancer Center (CCC) in Berlin. Here, you can find out about the specific treatments, research, and support they offer. Whether a center is big and widely recognized or smaller and specialized, you'll find detailed info about what they do and how they can help.

BEACON Wiki Resources Explained for Stakeholders

The BEACON Wiki is designed to support our diverse community of stakeholders by providing targeted resources. Here's a quick guide to help you find the resources most relevant to your needs.

For Patients:

Patient Guides: Easy-to-understand guides offering insights into treatments, navigating care systems, and supporting your journey through cancer care.

Patient Associations: Links to organizations where you can find emotional support, advocacy groups, and community services tailored for cancer patients.

Hospital Patient Resources: Specific information about the services and support available in hospitals, including patient care, treatment availability, acessibility resources, support programs, among others.

Hospital Facilities: Details on hospital amenities, from inpatient care facilities to recreational areas, ensuring you know what to expect during your stay or visit.

Councils: Information on patient councils and advisory boards you can join or consult to share your experiences and help shape cancer care policies.

Courses: Educational programs and workshops designed to empower patients with knowledge about their health, treatments, and ways to manage their well-being.

Clinical Trial Availability: Information on current clinical trials available at specific hospitals, giving patients access to the latest treatment options and research opportunities.

For Providers:

Educational Programs: Offers access to a wide range of educational opportunities for both doctors and nurses, from courses, online education, and nursing courses to comprehensive PhD and graduate programs, designed to support continuous learning and specialization in oncology. This includes internships and residency programs for hands-on experience and in-depth training.

Clinical Practice Guidelines: Comprehensive guidelines to inform evidence-based practice, treatment protocols, and patient management strategies.

Expert Consultation: Pages linking to the profiles of experts in various oncological disciplines within hospitals, facilitating second opinions and specialist consultations.

Clinical Trials: Up-to-date information on ongoing and upcoming clinical trials, including eligibility criteria and application processes, to engage in cutting-edge research.

Volunteering: Opportunities for providers to contribute to community outreach, patient education, and research projects, enhancing the overall impact of cancer care.

For Researchers:

Administrative/Claims Data: Offers insights into healthcare utilization, costs, and outcomes, supporting health services research.

Registries: Access to cancer registries for epidemiological studies, tracking cancer incidence, treatment outcomes, and survivorship.

Biobanks: Information on biological repositories that store and manage biospecimens, crucial for biomedical research.

Surveys: Datasets from surveys on patient experiences, quality of life, and treatment satisfaction, providing valuable patient-reported outcomes.

Clinical Trial Databases: Comprehensive databases of trials, facilitating research on novel treatments and interventions.

Trials: Up-to-date information on ongoing and upcoming clinical trials, including eligibility criteria and application processes, to engage in cutting-edge research.

For Policymakers:

Policymaking Initiatives: Information on current initiatives and programs aimed at improving cancer care, prevention, and research, offering insights into effective policy development.

Legislation: Updates on existing and proposed legislation related to cancer care, research funding, patient rights, and healthcare policies, ensuring policymakers are informed about legal frameworks and regulatory environments.

Reports: Access to comprehensive reports on cancer research, treatment outcomes, healthcare systems, and patient care, providing evidence and data to guide policy decisions.

Data Tools: Tools for accessible data visualization, enabling policymakers to analyze cancer care trends, outcomes, and disparities across the EU, facilitating informed decision-making.

Wiki Formatting

How to edit a page

Find the Page: Navigate to the specific page you wish to update or add information to.

1. Edit: Click on the "Edit Source" button to start modifying the page.

2. Write a summary: Below the Edit field, there is a Summary field that can be used to describe what changes have been made to that page. Use it so moderators can understand the intent of the change being made.

3. Finish the Edit: Click on “Save Changes” to save any changes you made to the page, “Show Preview” if you want to see what the page will look like after the changes before saving, “Show Changes” to display all changes made to the page so far, and “Cancel” to discard all changes.

This is the Edit Source button located in the Database: Finnish Cancer Registry (Finland) page.

These are the buttons located under the Edit field that are used to summarize, commit, preview or discard changes.

Note: Do not use the “Edit” button. Always use the “Edit Source” button, as the “Edit” button does not offer the necessary options to format the BEACON Wiki properly.

Basic Text Formatting

Bold Text: To make text bold, wrap it with three apostrophes on each side. For example, '''bold text''' will appear as bold text.

Italic Text: To italicize text, use two apostrophes on each side. For example, ''italic text'' will appear as italic text.

Bold and Italic: Combine both by using five apostrophes, like '''''bold and italic text''''', to get bold and italic text.

Headings and Subheadings

Use equal signs (=) around a title to create headings. The number of equal signs indicates the level of the heading:

== Level 2 Heading == This heading is used for section titles such as “Registries”

=== Level 3 Heading === This heading is used for resource titles such as “Database: National Cancer Registry (Bulgaria)”

Note: Level 1 headings are usually reserved for page titles.

Lists

Bullet Points: Start a line with an asterisk * for bullet points.

Example:

• Item 1
• Item 2
  • Subitem 2.1

Numbered Lists: Use the hash # for numbered lists.

1. Item 1
2. Item 2
   1. Subitem 2.1

Links

Internal Links: Link to another page within the same wiki with double square brackets. For example, [[Page Title]]. If you wish to use different text for the link, add a | after the actual title of the page. For example, [[Page Title|Display Text]].

External Links: Use single square brackets. For example, [https://www.example.com Display Text] for an external link. If you do not add display text, the link will be formatted as a reference, such as [1]. If there are multiple links without display text, they will be numbered in crescent order.

Images

To add an image, use the syntax [[File:Example.jpg]] for a basic image inclusion. You can add options like [[File:Example.jpg|thumb|Caption text]] for a thumbnail with a caption.

Tables

Tables start with {|, each row is indicated by |-, and cells are divided by |. For example:

Header 1	Header 2
Row 1, Cell 1	Row 1, Cell 2
Row 2, Cell 1	Row 2, Cell 2

Semantic Wiki Formatting

Semantic MediaWiki allows you to add semantic tags to the content, which helps in organizing and linking data efficiently. This guide will show you how to tag information within the BEACON wiki.

Semantic tags are special markers that you add to content to provide structured data. They follow a specific format: Value. For example, to tag the sponsor of the Finnish Cancer Registry database, you would write: Cancer Society of Finland.

Cancer Society of Finland was tagged as the data owner of this page.

Adding Tags to a Page

Identify the Information: Determine the piece of information you want to tag, such as the type of information available or the data owner. Select the Property Name: Choose a property name that matches the type of information.

Write the Tag: Follow the format [[PropertyName::Value]]. If you're adding information about the type of cancer data available, you might write [[availableVariable::type of cancer]]. Both Property Names and in some cases Values can be found in a predefined list here. Be sure to check the list before tagging any information on the BEACON Wiki to avoid using Property Names or Values that are not predefined when they should be.

Best Practices

This is a list of best practices to keep in mind while editing the BEACON Wiki.

Sharing Sources

Cite Your Sources: Always provide references for the information you contribute. Use the wiki's citation format to add sources at the end of your edits.

Evaluate Sources for Reliability: Share information from peer-reviewed journals, official health organizations, or recognized cancer research institutions.

Link to Accessible Content: Prefer sources that are freely accessible, providing direct links whenever possible to facilitate easy verification and further reading.

Clarity and Structure

Be Clear and Concise: Write in simple language to ensure accessibility for all, especially for those who might not have a medical background. Use Semantic Tags Wisely: When tagging content, follow the wiki's guidelines to maintain structure and searchability.

Respecting Privacy

Personal Information: Never share personal information about others without their explicit consent and the explicit consent of the BEACON Wiki Staff. This includes health data, contact details, and personal stories.

Sensitive Content Warning: If sharing potentially distressing information, include a warning at the beginning to prepare the reader. Privacy in Communication: Use private messages to discuss sensitive topics or to share personal information when necessary and appropriate.

Collaborating with Other Users

Be Constructive and Kind: Approach disagreements with empathy and respect, aiming to understand and learn from different perspectives. Encourage Participation: Welcome new contributors warmly, and offer guidance on how they can get involved. Collaborate on Edits: If you see an opportunity to improve existing content, consider reaching out to the original author for a collaborative update.

Review Process

Initial Submission

When you submit an edit or contribution to the wiki, it is first sent to our team of moderators from the BEACON Wiki team. This is the starting point for the review process.

Source Verification

With Sources: If you provide sources along with your edits, our moderators will verify these sources to ensure they are reliable and relevant to the information provided. This is a crucial step as it helps maintain the integrity of the information on our wiki. Without Sources: If your edit lacks sources, our team will take upon themselves the task of finding sources to confirm the information you've provided. However, due to the time-consuming nature of this process, edits without sources are considered low priority and may take longer to review and publish.

Institution-Affiliated Edits

If your user ID has been verified by the BEACON Wiki staff and you are recognized as a member of the institution whose information is being edited, your contributions will be automatically added to the wiki. This policy is in place to streamline the process for verified experts and institutional representatives, ensuring that their knowledge and updates are shared efficiently.

Verifying Your Institutional ID

For members of institutions whose information is featured on our wiki, having your ID verified by the BEACON Wiki staff streamlines the process of contributing and updating content. Verified members can have their edits automatically added, reflecting the trust and authority given to experts and institutional representatives. This section outlines the steps to have your institutional ID verified.

Create or Update Your User Profile

If you haven't already, create a user profile on our wiki. If you already have a profile, ensure your information is up-to-date, especially your affiliation with the relevant institution.

Submit Verification Request

Send an email to our verification team at beaconcancer@gmail.com. Include your full name, your user profile name, and your official email address associated with the institution.

Verification Confirmation

Once your request is received, our verification team will review them. This process may take a few days. We appreciate your patience during this time. After reviewing your information, we will update your user profile status to "Verified" if everything is in order. You will receive an email confirmation that your ID has been verified, along with any additional instructions or information needed to begin contributing to the wiki as a verified member.

Thank you!

We deeply appreciate your contributions and support for the BEACON Wiki. Your involvement is crucial in helping us provide valuable information to those affected by cancer. If you have any feedback, suggestions, or concerns, please do not hesitate to share them with us. Your insights help us improve and grow our community. Thank you for being an essential part of our journey.

The BEACON Wiki Team