Patient-led online peer support is a lifeline for many thyroid patients, providing information and shared experience in a conversational, individualized, and timely manner.
We as thyroid patient peer-leaders decided in 2020 to establish a new Thyroid Patients Canada (TPC for short) support group on Facebook, where we had already been established.
- Search Facebook for “Thyroid Patients Canada Support”
- The direct link is https://www.facebook.com/groups/thyroidpatientscanada/
We knew there were already a lot of Facebook thyroid patient support groups out there, but diversity is a good thing.
Some of us participate in three or more support groups on an ongoing basis and are enriched by each one of them differently.
What’s special?
In our group, we want to uphold the values we articulated as we registered our Thyroid Patients Canada organization (TPC) as a nonprofit corporation at the federal level in February, 2020. We stated our purpose as the following:
“To promote health by providing individuals with thyroid disabilities with access to patient-led peer support communities and science-based public education, and by publicly advocating for improvements to thyroid health care policy and research.”
To be consistent with our stated aim to provide “science-based public education,” we will ask members, moderators, and admins to aspire to “science-based,” and more broadly, “evidence-based” patient-led peer support.
The public thyroid science & advocacy group will remain.
We also kept our preexisting “Thyroidpatients.ca PUBLIC group.”
The public group is a place for diverse international followers, not just patients but also health professionals and citizens, who can engage in discussion about our advocacy efforts—thyroid health care system challenges and thyroid science. But it’s not for individual patient support because of privacy concerns.
Here’s the basic VISION of the PRIVATE support group.
Private: It’s a private (closed) Facebook discussion group. One has to answer open-ended questions before joining. It does not permit people to share messages from the group to anywhere outside the group.
Patients-only: We allow only thyroid patients to join because doctors’ presence can cause power imbalances.
International: It is an international members’ group, while its leadership and likely most of its membership may emphasize the Canadian healthcare situation. International membership enables us to learn from thyroid healthcare systems in other countries.
Languages: The primary language is English, but posts in other languages are welcomed—as long as the poster does not mind it when users rely on Facebook’s built-in translation feature and reply in English. Misunderstandings can occur.
Topics: Individual thyroid patient support posts will be the main purpose, but it won’t forbid discussion of any topics intrinsically related to thyroid, including health care system change & advocacy. Posts that wander too far from thyroid health, including into related diseases, are discouraged—consider how the health condition relates to thyroid (thyroid hormones, thyroid antibodies, etc.) and it will be fine.
Sharing links: It allows people to post links to thyroid content online, but we ask everyone, not just moderators, to closely question and scrutinize the content of links for their claims and evidence. Posts should introduce links and comments should inquire into their content according to the aims articulated in our group’s vision. Links are subject to any group member’s critique, without insulting or offending the person who posted them.
Moderation: Like most thyroid patient discussion groups, it will have basic rules about civility, trying to stay on topic, protecting good doctors, not posting non-thyroid and off-purpose messages, and not promoting a healthcare product or service as a seller or biased influencer. Exceptions may be made by approaching the group admins, since there may be some borderline cases that fit TPC’s vision and purpose.
Overall aim
As we do these three things, the overall aim is to develop our thyroid experience and wisdom through compassionate, respectful, friendly discussion, in the spirit of collaborative inquiry.
Risks and challenges
Our group may be private and invitation-only, but:
- Nothing we post online is ever 100% private. We have freedom to accept the risks of sharing our private health information. We have a responsibility to protect the privacy of data posted by our peers.
- Thyroid Patients Canada is a registered federal non-profit, so we must ensure our groups operate ethically and legally, and within the stated purposes of our organization.
- Facebook oversees its groups and flags what it considers “fake news.” We uphold their community standards or face sanctions. Health groups can be completely shut down without notice or apology, or their notifications to members can get turned off, or they can become invisible to searches for the group’s existence.
We’ll be safe and productive if we all aspire to uphold the basic principles:
Three principles
- Share wisely,
- Seek evidence, and
- Reason carefully.
Humility
Along with a desire to give helpful, reliable peer advice, an attitude of humility is essential.
No one should ever assume that any of us has a full grasp of “the whole truth” on thyroid therapy, even those among us who have decades of experience and deep reading in thyroid science.
Part of humility is a willingness to be respectfully corrected by a peer if something we say is technically incorrect, a common myth about thyroid, or the truth is not as extreme or rigid as we represent it.
Let’s all admit when we’re uncertain and when we simply don’t know enough (yet).
Moderators & mutual moderation
Any thyroid patient may have the care, skill, and wisdom to respectfully advise, inform, correct and question, not just moderators/admins.
Our official group administrators and moderators are also accountable to uphold the same standards of the group—they aren’t just police (though they do have to keep an eye on things), and they aren’t “the teachers” or “the experts”
Moderators are:
- peer models of supportive, informative, interactive discussion
- peer mentors of wise sharing, evidence-seeking and careful reasoning,
- peer inspirers of creative ideas, possibilities, and hope,
- peer encouragers of the discouraged and suffering, and
- guardians of the community’s ethics and ideals, posting reminders, sharing memes, and nudging us back on track when we wander off.
- people who approve new members to join based on their response to entry questions and review of their Facebook profile.
Are you a patient interested in joining?
Ask for admission at https://www.facebook.com/groups/thyroidpatientscanada/