Disclaimer: I work for a company that uses this data to match terminally ill patients with niche treatments and clinical trials, and the work literally saves and prolongs lives.
Talked with a company that made similar claims about what they are doing, but it turns out they were really ensuring that their users where choosing the medication from the highest bidder rather than the one that was really in the the patient's best interests.
The mental gymnastics they did to justify they were doing what was in the patient's best interests was fun to observe, but in the end they were just a tool of a large pharmaceutical company, exploiting sick people for profit.
Quick cynicism sanity check: who pays your company, your users or the "niche" treatment provider?
If it's the former, that sounds like it's good work.
If it's the latter I would recommend being a bit more skeptical of the business motives of your employer and their customers.
Insurers. They don’t want to pay for the expensive product.
Of course, not only is it distinctly possible to contribute to society and make a profit—it’s basically the only way. In the real world loads of researchers and engineers and other employees aren’t going to work for free to appease random Internet cynics (who rarely if ever make positive contributions to society of their own, mind you), so capital is required which entails investors and returns on investment. Yeah, that means insurers or someone else paying money.
Marketing drugs better isn’t exactly saving lives. Researching drugs should be done through IRB and include patient consent. Of course, there’s great benefit to bypassing ethical controls, but they are still worthwhile.
I have literally yet to see a medical-adjacent company not default to assuming they’re on the moral high ground.
When I see companies say “we save lives” my initial reaction is no different from companies that say “we hire the best” or laws that “are for the children”.
Maps Street View of 1428 Bush St, San Francisco is more of what I have in mind. But maybe I’ve just passed that building one too many times.
It's surprisingly hard, which is why there is a cottage industry built up around it for clinical trials.
Regardless, getting informed consent for data acquisition is great if you are doing a clinical trial or really looking forward, but for a lot of things you want a ton of retrospective data that can be difficult or impossible to consent.
It's a hard problem. I hope in the future it will be an easy problem, but we aren't there.