Table 1.

Case violations and Council for International Organizations of Medical Sciences guidelines.

Violation type		Case 1 - Commercial scraping	Case 2 - De-anonymization of forum user	Case 3 - Fake profile data	Case 4 - Multiple scraper bots	Relevant CIOMS^a guideline number
PLM^b terms-of-use violations
	Not a patient, caregiver, health care professional, or visitor with legitimate reasons to participate^c	✓	✓	✓	✓	7, 22
	Posting false content^d			✓		4, 11
	Use of any robot, spider, scraper, or other automated means to access the site or content^e	✓	✓		✓	7, 12, 22
	Lack of research authorization by PLM^f	✓	✓	✓	✓	7, 8, 9, 10, 22, 25
Ethical violations
	De-identifying patient data in any way		✓			4, 11, 14, 15, 22
	Inadequate/no informed consent	✓	✓		✓	9, 10, 12, 22
	False identification or misrepresentation			✓	✓	4, 22
	Verbatim use of user posts		✓			4, 11, 12, 14, 15, 22

^aCIOMS: Council for International Organizations of Medical Sciences.

^bPLM: PatientsLikeMe.

^cPLM user agreement: “To become a member and access the area on this Site reserved for members (the ‘Member Area’), PatientsLikeMe requires that you are either a (a) diagnosed patient of the particular community you are joining or a parent or legal guardian acting for such a patient who is under 18 years of age or incapacitated, (b) caregiver for a patient eligible to join such community, (c) health care professional (e.g. doctor, nurse, health researcher, etc.), (d) guest with legitimate, non-commercial reasons to participate in the community and who agrees to respect the privacy and preserve the dignity of all community participants or (e) guest as authorized by a PatientsLikeMe member or employee.”

^dPLM user agreement: “Members shall not post or upload any information or other content on the Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography.”

^ePLM user agreement: “You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”

^fPLM user agreement: “Please note that under our terms of service, you are not permitted to capture or utilize data from within the site nor to solicit members through our forums or private message to take part in your study.”