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 have decided to establish a new Thyroid Patients Canada (TP.CA for short) support group on Facebook, where we are already established.
We know there are 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 in a different way.
We do not want to establish a sense of rivalry between groups. We don’t want to boast that ours is going to be better than others or will provide everything a patient wants or needs.
It is just going to be unique, like any support group.
In our group, we want to uphold the values we articulated as we registered our Thyroid Patients Canada organization (TP.CA) 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 will keep our current “Thyroidpatients.ca public group” with the same purpose it currently has. The public group is a place for diverse international followers, not just patients, 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.
Here’s the basic structure of the new support group.
Private: It’s a private (closed) Facebook discussion group. One has to answer questions before joining. It will not permit people to share messages from the group to anywhere outside the group.
Patients-only: It will allow only thyroid patients to join because doctors’ presence can cause power imbalances.
International: It will be an international members’ group, while its leadership and likely most of its membership may emphasize the Canadian health care situation. International membership enables us to learn from thyroid health care systems in other countries.
Languages: The primary language will be 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, will be discouraged—consider how the health condition relates to thyroid (thyroid hormones, thyroid antibodies, etc.) and it will be fine.
Sharing links: It will allow people to post links to thyroid content online, but we will 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 must be 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 health care product or service as an influencer. Exceptions may be made by approaching the group admins, since there may be some borderline cases that fit TP.CA’s vision and purpose.
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:
- Share wisely,
- Seek evidence, and
- Reason carefully.
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”
- 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.