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Brave Bosom @BraveBosom
, 12 tweets, 3 min read Read on Twitter
I will do my best to state this concisely, but of course difficult in a tweet.
1 - In order for there to be trust, there must be full recognition and accounting of the harm that has been created to FB patient support groups, so that people like @itsMandaPanda have justice for what happened to them. That must be initiated by Facebook.
2 - Collective self-governance of our support groups' data. We cultivated these groups, and we are the stewards. We cannot talk about social determinants of health until these resources are self-governed by vulnerable populations affected by harmful data mining.
3 - Rights, not rhetoric. Enforceable rights to privacy that are tied to meaningful consequences if privacy and data rights are violated.…
4 - We do not want a "seat at the table" in medicine. This is our table. We seek to invite the scientists, clinicians, and technology platforms that have earned and are worthy of our trust. Recognizing that trust must be earned by these experts, not taken without consent.
5 - Resources. We can no longer sustain the work of our support groups by relying on the "altruism" of patient advocates. Data stewardship, support of patient communities on social networks, and governance require real work. Our altruism has been exploited for far too long.
6 - Experts. We seek partnership, mentorship, wisdom, and collaboration with experts and want very much to realize the power of our data through meaningful research. We cannot do that until the tech and medical establishment recognizes that patients are legitimate experts.
7 - Education. Part of our deeply rooted problems in cybersecurity and bioethics are due to the fact that patient communities are not trained to handle emerging technologies that affect us. We must be given legitimate education that lead to legitimate career paths.
8 - No knowledge about us without us. Social determinants of health are being used to mine data in ways that can directly be used to deny patients jobs and health benefits. #SDoH
9 - Safety as a clearly defined set of practices. When we say that we seek safety - it means that we must define and PRACTICE safety on social media. Just as we practice defensive driving on the highway, we must define, enable, and enforce safe practices.
10 - Support. When we say "support" this means we protect the knowledge of our shared human vulnerabilities generated by #SDOH. We don’t exploit those vulnerabilities through control, power, or manipulation of individuals through their social network data.
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