Long COVID Web Code of Conduct

Approved Version: March 2023

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The Long COVID Web network comprises individuals from various backgrounds. We believe complex problems benefit from diversity in seeking resolution and a way forward – this requires diverse cognitive repertoires, technical skills and cultural backgrounds. The network will include members who are (in no particular order) researchers, healthcare professionals, people with lived experience, decision-makers, or industry representatives, amongst other partner groups. To become an individual member, applicants must complete a few mandatory fields as part of the registration or application process, which will allow for identification of individuals and any affiliated organizations. Anonymous or organizational membership is not allowed. When participating in any Long COVID Web activities, our members are expected to participate in a respectful and proactive manner that contributes to the benefit and well-being of our communities. 

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Long COVID Web is dedicated to promoting open science and academic freedom, in accordance with the Association of Universities and Colleges of Canada's principles of reasoned discourse, rigorous research, and peer review1. This commitment entails certain responsibilities, including ensuring that academic freedom is exercised reasonably and with respect for others. Inappropriate claims or interpretations of academic freedom must be managed appropriately. To address issues as they arise, we will adopt a process of shared decision-making amongst our leadership. Long COVID Web expects its members to rely on evidence, be willing to subject scientific claims to rigorous and public review by experts and base their work on the best available evidence.

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Participating in Long COVID Web implies consent to abide by this Code of Conduct and align with the Long COVID Web values in all aspects of engaging with the network. We may make changes to this Code of Conduct at the sole and absolute discretion of Long COVID Web. We will notify members of changes by updating the “Last Updated” date of this page, and changes will be effective immediately upon posting of the updated Code of Conduct. We encourage you to periodically review this Code of Conduct to stay informed of updates.

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Activity within the Long COVID Web shall not be anonymous; all participants (members and non-members) shall be identified clearly by their name and affiliation(s) and/or role within the network. The security of any sensitive data between participants must be respected, and only shared through approved secure protocols under the authority of a valid Data Sharing Agreement or equivalent agreement. All participants must abide by standard research ethics and scientific integrity policies such as the Tri-Agency Framework for the Responsible Conduct of Research, including giving proper credit where it is due. Respecting limits (such as on confidentiality and further distribution) defined by researchers supplying information is expected.

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Long COVID Web members will recognize that a diverse and inclusive environment, one that holds collaboration, equity, and patient-centredness as core operating principles, has the greatest potential to generate the best results. Diversity and inclusivity will be actively encouraged at all levels within the Web structure from individual membership to the leadership of the Web.

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As Long COVID Web will have participants from diverse backgrounds, the environment should be one of mutual human respect. Diversity of background and experience across the membership requires all members to recognize differences in understanding, experiences and knowledge, which includes an appreciation and tolerance for communications unintended to harm. We are a learning network – a notion that extends to behaviour and communication for all network members. Harassment, including sexual harassment and bullying, on the other hand, is specifically prohibited. Harassment is understood as any behavior that is known, or ought reasonably to be known, to threaten or offend another person or group of people. It includes verbal comments, and other forms of conduct, directed against a person or group because of their gender, gender identity, gender expression, sexual orientation, physical disability, Long COVID symptoms or experiences, or ethnicity. For example, this prohibits, among other things, deliberate intimidation or disruption of open communication.

 

Community members will recognize that incoherent, unorganized, non-evidence-based, or alarmist messages to the public or the media can be damaging. Research results should not be broadcast before being confirmed, vetted, and shared appropriately. If early results with public health policy implications are being shared, their provisional nature should be clearly identified.

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Marketing or business promotion efforts, including efforts to raise capital, are inconsistent with the spirit of Long COVID Web and are forbidden. Sharing or using member information, including names and email addresses, outside of the network is forbidden without explicit permission from the respective individuals.

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Long COVID Web reserves the right to remove any comments or posts on its public facing website or social media accounts that it deems inappropriate. An inappropriate comment includes but is not limited to:

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• Personal attacks, indecent or offensive comments, trolling, harassment, or abuse

• The endorsement or promotion of a commercial product

• The persistent promotion of a test, drug, intervention or claim without accompanying scientific basis

• The sharing of dis/misinformation

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Members asked to stop any inappropriate behavior are expected to comply immediately. The executives and network administrators have the right to remove members who do not comply with this Code of Conduct, or whose beliefs or behaviour does not align with Long COVID Web values, or if they demonstrate disrespectful and unethical interactions with their colleagues or our staff members.

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If you are being harassed, we encourage that you bring this to the attention of the members of the Long COVID Web Team via a direct message, or via email at info@longcovidweb.ca. However, if you notice that someone else is being harassed, witness violations of this Code of Conduct or have any other concerns, we consider that you have a duty to bring this to our attention.

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We thank you in advance for your compliance with these expectations, and we look forward to engaging with you through the various activities of Long COVID Web.

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[1] Association of the Universities and Colleges of Canada. 2011. https://www.univcan.ca/media-room/media-releases/statement-on-academic-freedom/