On Monday, online patient support community PatientsLikeMe sent an email to its members announcing that it inked a deal with UnitedHealth Group, becoming part of the latter’s research branch. 

While both companies were upbeat about the deal, the public’s reaction has been far from universally positive. Concerns around privacy and data sharing in particular began to surface on social media, as numerous Twitter users have flat out said they will delete their accounts and urging others to do so as well. 

In the original fact sheet sent to members, PatientsLikeMe CEO Jamie Heywood assured members that no changes would be made to the PatientLikeMe name or membership, but indicated that there will be more connections with UnitedHealth Group. As in the original privacy policy, he said that the company would continue to share data with just two types of third parties: researchers, like UnitedHealth Group’s R&D division, and the vendors whose services contribute to website operation. Importantly, none of this information would be personally identifiable, and no private conversations between members would be shared.

To that point, the startup has always been up front about sharing data. 

“But @patientslikeme’s ethos has always been to share data extensively to promote cures & better care. Looking forward to hearing more from @JamieHeywood & Ben,” Matt Holt, cofounder of Health 2.0, wrote in a response tweet, also noting the company’s previous investor was a Chinese genome company that raised concerns among federal regulators. 

However, in the wake of Facebook scandals, some have said PatientsLikeMe was a place to go as an alterantive. For them, that trust is now damaged. 

“This, combined with the CEO of Smart Patients moving to Facebook radically shifts what online health communities look like in 2019. The vast majority are surely on Facebook, which feels like a privacy time bomb, and the rest now owned by the largest insurer in the US,” Simon Hunter, director of product at HingHealth, wrote on Twitter.  “PatientsLikeMe has been very clear to align themselves to UHG's R&D entity, clearly aware of the privacy concerns. But this acquisition demonstrates how difficult it is to create a viable biz model around such products. (PLM have been open that they sell data to pharma, etc).”

That is not to say the reactions have been entirely negative either, with several are taking the line of ‘proceed with caution.’

“It’s a really difficult option, especially for #PatientsLikeMe, which was built on the premise that the data you provided WOULD be shared—ie, their famous “openness” vs “privacy” policy. How that translates to consumer protections is difficult,” Jan Oldenburg, chief editor of Participatory Health, wrote on Twitter.  

Still, others like Dave deBronkart, an author and digital health advocate, are pointing out that after its Chinese investors were forced to divest, the company was left with few options. 

“The question remains, how to move forward with patient-driven searches for remedies,” he wrote in Tincture. “We live in a world full of commercial interests, and none of us can see 'under the hood' to see everything that’s going on everywhere. I just don’t want people to assume that because an insurance company bought PatientsLikeMe, it’s all gone to corruption.”

The news is not yet a week old and details are sure to emerge in the upcoming weeks. MobiHealthNews has reached out to both PatientsLikeMe and UnitedHealth Group and will update the story with replies.