PatientsLikeMe
- The documents do not say whether your data trains AI.
- Your data is used for personalized ads, including by third-party ad companies.
- Data is shared with partners and affiliates; you can opt out.
- The documents do not say who can read your content.
You share detailed health data that they sell to pharma and partners; public posts can be googled.
Agent Trust Hub uses AI and may make mistakes. Review reports and confirm their contents before relying on them.
Collected
Account info, health details, IP, geolocation, cookies, and what you type in posts.
Read the exact line
Privacy policy
“Examples of Non-Identifying Data that Members may submit include: Non-identifying photographs Age (unless over 89) Location (state/province, country) Sex Gender identity Condition/disease information”
Training
They use it to run the site, do research, and sell data to partners.
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Privacy policy
“You should expect that every piece of Non-Identifying Data you submit on PatientsLikeMe.com may be shared with Partners.”
Sharing
Other members, staff, vendors, and partners like universities and drug companies can see data.
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Privacy policy
“These Partners could include, but are not limited to: universities, pharmaceutical companies, hospital systems, value-based care providers, insurance companies, regulatory bodies”
Kept
You can delete your account, but data already in research is kept in archives.
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Privacy policy
“If you request deactivation or deletion, research that is already in progress or that was conducted prior to your request, will still include your data.”
Controls
You can pick Public, Community, or Personal view and email privacy@patientslikeme.com for rights.
Read the exact line
Privacy policy
“You can change your privacy level at any time. None of the privacy levels allows non-members of the community to contact you.”
Fine print
They can close you without notice; you them; disputes go to Massachusetts courts.
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Terms of service
“You agree that PatientsLikeMe may, with or without cause, immediately terminate your PatientsLikeMe.com membership or limit or terminate your access to the Member Area or the Platform without prior notice.”
Expand “Read the exact line” to see the source alongside the explanation.
What you can turn off
The controls and opt-outs their own documents describe, and where they say to find them.
Set privacy to Community or Personal view
Privacy settings on the Platform (Public, Community, or Personal view)
Turn off optional ad cookies
Cookie banner or cookie icon in the bottom left, then cookie preference center
or a copy of your data
Email privacy@patientslikeme.com or contact the community team
Opt out of sale or targeted ads if your state allows
Email privacy@patientslikeme.com; they also honor Global Privacy Control
If a switch is not where they say, the deletion request above still applies.
Line by line
The lines that matter most, worst first.
Health details you enter, even without your name, can go to outside partners.
Read the exact line
Privacy policy
“You should expect that every piece of Non-Identifying Data you submit on PatientsLikeMe.com may be shared with Partners.”
For example, your treatment side effects could be given to a drug company for research.
They sell stripped health data. They try to stop partners from putting names back on.
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Privacy policy
“When selling this information, PatientsLikeMe removes Members’ Identifying Data () to reduce the possibility of re-identification and contractually forbids Partners from trying to re-identify Members.”
For example, a pharma partner could buy a dataset of ALS symptoms without your name.
If you ever set Public view, search engines may keep showing your health profile.
Read the exact line
Privacy policy
“Public profiles may be indexed or stored by Internet search engines (e.g., Google) or other independent sites, which means your information might come up in the search results by anyone on the Internet, even after you change to a different privacy level.”
For example, a future employer could Google your username and still find an old public post.
If you type your real name in a forum post, they treat it like shareable health data.
Read the exact line
Privacy policy
“If you include information that would otherwise be considered “Identifying Data” within any Free Text Entries, for purposes of this Policy, such information will be treated as “Non-Identifying Data””
For example, writing your full name in a journal could let partners get that text as “non-identifying.”
They can shut your account anytime and do not have to warn you first.
Read the exact line
Terms of service
“You agree that PatientsLikeMe may, with or without cause, immediately terminate your PatientsLikeMe.com membership or limit or terminate your access to the Member Area or the Platform without prior notice.”
For example, you could lose access overnight and not get a heads-up email.
If they get sued because you broke the rules, you may have to pay their lawyers.
Read the exact line
Terms of service
“You agree to and PatientsLikeMe, its officers, employees, agents, subsidiaries, affiliates and other partners, from and against any claims, actions or demands, liabilities and settlements including without limitation, reasonable legal and accounting fees, resulting from, or alleged to result from, your violation of this Agreement.”
For example, a post they say broke the rules could lead to a bill for their legal fees.
Ad companies can track you on this site and elsewhere.
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Privacy policy
“These third parties may use cookies, alone or in conjunction with web beacons or other tracking technologies, to collect information about you when you use our website.”
For example, an ad network could use cookies here to show you health ads on other sites.
Deleting does not pull you out of studies that already started.
Read the exact line
Privacy policy
“If you request deactivation or deletion, research that is already in progress or that was conducted prior to your request, will still include your data.”
For example, a paper using last year’s data can still include your records after you delete.
They say they will not sell your name and email to outside advertisers.
Read the exact line
Privacy policy
“We will never sell your identifying information for non-PatientsLikeMe advertising purposes”
For example, they claim they will not sell your email list to a random ad buyer.
Your name and contact details need extra permission before partners get them.
Read the exact line
Privacy policy
“Additionally, Identifying Data is not shared with or sold to Partners unless explicit consent is given.”
For example, they should ask before giving your email to a study sponsor.
You keep copyright, but they get a wide license to reuse what you post.
Read the exact line
Terms of service
“If you are a Member, you (or the author) owns the copyright in the messages, images, and other content you post in the Member Area, but by posting such content within User Submissions to the Member Area you grant PatientsLikeMe and our affiliates the right to use, copy, display, perform, distribute, translate, edit, and create derivative works of your User Submissions, subject to the terms of the Privacy Policy.”
For example, they could copy your forum story into a research report.
Words to know
Legal words from the lines above, in plain English.
- de-identified
- Data with your name and obvious identifiers removed, though it can sometimes still be traced back to you. For example, your chats with names stripped out may still be kept and studied after you delete your account.
- indemnify
- You promise to pay the company's legal costs and losses if your use of the service gets it sued. For example, if you post a song you do not own and the label sues the app, you owe the app's lawyer bills.
- affiliates
- Other companies owned by or connected to the same parent company. For example, if you use one app, its sister apps under the same owner may also get your data.
- third parties
- Any company or person other than you and the app, such as advertisers, partners or analytics firms. For example, an analytics company that receives a record of every screen you tap is a third party.
- cookies
- Small files a website saves on your device so it can recognise you and remember what you did. For example, a cookie keeps you logged in and can also tell an ad company which sites you visited.
- tracking pixels
- Tiny invisible images or bits of code in a page, app or email that report back when and where you opened it. For example, a pixel in a marketing email tells the sender the moment you read it.
- sell or share
- Under California law, selling means passing your data to others for money or other value; sharing means passing it on for targeted ads. For example, letting an ad network use your browsing history in return for ad space counts as a sale.
- consent
- Your clear agreement to something, given by an action like ticking a box or tapping Accept. For example, a pop-up asking if the app may use your location is asking for consent.
How we got here · grade D · score 38/100 · 15 of 15 policy answers backed by a verified quote · 3 not stated
What does the app collect beyond what it needs to work?
They collect account data plus detailed health records, geolocation, IP, cookies, and browsing-style platform use data.
Does it record your voice, face or body, and what happens to that?
Not stated in the documents.
Are your chats and uploads used to train AI models, and is that off by default?
Not stated in the documents.
Can employees or contractors read your conversations, and when?
Not stated in the documents.
Are you profiled or tracked for advertising?
Third parties serve ads and use cookies and beacons to track you across sites. Google Analytics is used.
Do they sell or share your data, and can you opt out?
They share and sell de-identified health data with partners. Identifying data needs extra consent. Some states can opt out of sales.
What rights do they take over what you type and what the AI makes?
You own copyright in posts, but you grant them rights to use, copy, edit, and make derivative works, limited by the privacy policy.
How long do they keep your data after you delete it, and can you delete it in the app?
You can deactivate or delete an account. GDPR deletion is by contacting the community team. Old research keeps copies.
Does it build a lasting memory or profile of you, and can you see, edit or turn it off?
Your health profile has Public, Community, and Personal view settings you can change, and you can hide some conditions.
Do they commit to basic security, and have they leaked data?
They say they take commercially reasonable technical precautions and will notify after a breach. No audit is described.
Is there a real age gate, and are teens protected?
You must be 13 or older (16 in the EU/UK), or a parent acting for a child. You warrant your age when you register.
Will they tell you when the rules change, and is the policy specific?
Policies are dated with a change log. Privacy says they will notify members; terms say continued use after posting means you accept.
Can they close your account without warning, and can you get your data out first?
They may end membership immediately with or without cause and without prior notice, and need not keep your posts.
If something goes wrong, who pays?
The site is as-is with no consequential damages, and you must indemnify them if you violate the agreement.
Do subscriptions renew on their own, and can you get a refund?
Membership is currently free. They reserve the right to charge later.
The privacy policy is 6,712 words at a college level (Flesch reading ease 42.1); the terms are 3,022 words at a college graduate level.
