Yea this is the problem. When well meaning startups attempt to make change they get acquired by a piece of shit sales behemoth. If somehow one could resist the acquisition and just eat everybodies lunch we'd all be better off.
It’ll be fought every step by the entire healthcare industry.
The entire industry seems like a politically connected bureaucratic nightmare of one kind or another in every country on earth. Solving that problem would require some way to allow doctors to become genuinely independent again[0] and to ensure that patients could choose their doctor. If doctors were genuinely independent, they would choose the best medical records software and that software would be able to open up files from competitors[1].
[0]: The main American blocker to this would be something called malpractice insurance which is extremely unaffordable and necessary to protect doctors from being bankrupted by lawsuits whenever they make a mistake. Hospitals can afford that insurance much more easily than independent doctors so they can basically buy up all the doctors. I suspect that an affordable public option for this insurance would help restore a competitive free market in medicine.
[1]: I've heard first-hand from family members that the file formats for the different medical records software are incompatible. They convert medical records by actually typing the information from the other hospital's system into their system.
The real factors driving consolidation are IT costs, negotiating power, and practitioner preferences. Even with modern SaaS products it's expensive for a small organization to operate an EHR and other IT infrastructure. Payer organizations have consolidated through M&A activity and are constantly trying to drive down prices so providers also consolidate to force payers to keep them in network regardless of prices. And many doctors just don't want to manage a small business; they would prefer to focus on treating patients and collect a steady paycheck.
Your family members are wrong. There are standard file formats for sharing medical records across different software. The most common format is HL7 Continuity of Care Document (CCD) which can accommodate an entire patient chart in a single XML file. Every major EHR has supported CCD export and import for years under federal government certification criteria. If your family members had to do manual data entry then either their software wasn't configured correctly or they didn't know how to use it.
https://www.healthit.gov/topic/certification-ehrs/certificat...
CCD is very well specified, although you might still find some EHRs that fail to comply with the standard in some minor ways. There is a project underway to migrate that data model to FHIR encoding but it's not finished yet; that will make document construction and parsing a bit easier but won't necessarily address compatibility issues.
https://www.hl7.org/implement/standards/product_brief.cfm?pr...
It's what allowed my open-source startup Fasten Health to even exist. I was diagnosed with a chronic condition, and wanted a way to store my health records privately on my own devices. A bit of luck and a POC later, I was able to confirm that patients can access their own records with little-to-no barriers.
As far as I can tell, the real reason for the costs are consolidation. In my wife's world, independent pharmacies are being killed by PBM's(1) which literally set reimbursement rates for the small guys at below the wholesale cost of the medicine. The user experience here is you go to an independent pharmacy, you hand them your script, and they run the script through their computer systems, then say "Sorry, I can't fill this for you, because it cost me more than the insurance will pay me" and then you have to go to one of the big three which have enough market power to negotiate with their PBM's for higher rates (and even here PBM's routinely end up at least temporarily dropping one of the big boys as part of their hardball negotiations with each other).
There are basically three PBM's for the whole country, they have enormous, basically monopoly power (80% of the insurance market), and if you are a small shop your rates are crap. So the small pharmacies close/sell out and the big three drug stores get bigger. And that is happening in medicine as well, as I understand it, though I haven't seen it from the inside.
The core idea behind the ACA ("Obamacare") was that clear competition from insurance companies (and medical providers) through the exchanges would lower the total costs of health care, and it doesn't seem to have panned out, because there hasn't actually been much competition, instead there has been massive consolidation. Most counties in the US don't actually have much competition on their ACA Exchange(2), and most counties don't have much competition from medical providers either- they've all consolidated to get better rates from the insurance company- so you have monopoly insurance and monopoly providers competing with each other to see who gets more rents, not trying to compete on lowering costs.(3)
1: Pharmacy Benefit Managers, https://www.vox.com/2023/5/10/23709448/what-are-pbms-pharmac... for an explainer
2: https://www.vox.com/mischiefs-of-faction/2017/7/20/16005598/...
3: This is why many Democratic health care wonks are looking more seriously at single-payer over the past decade. If we in practice have unchecked monopolies dominating health care, let's at least have them be government run and therefore responsive to something, even if it's just politics it's still better than the alternative.
Most people really only care about the amount of the insurance deduction, co-pays, and care availability; they don't know or care about the "behind the scenes" details.
The consolidation has been absolutely phenomenal in the last twenty years, and digging into exactly why each town could have an independent hospital and staff 20/30 years ago and why they're all being consolidated now.
And of course as I didn't say in that message but is obviously true, the ACA has led to far more people carrying health coverage than before. It's just that instead of the exchanges, it's the Medicaid expansion that has led to this. Even with Robert's unprincipled last minute rewrite and the 10 states that are still allowing their rural hospital system to be utterly gutted rather than giving Democrats the win, a higher percentage of people have health coverage than at any point in American history before the ACA, and that is entirely because of Obamacare. So that is why reinforcing the successful part (government insurance) and abandoning the failed part ("market reform") is so attractive.
The problem is that the health care market isn't a truly free market. Uwe Reinhardt, Princeton economist, wrote a lot about how it was a broken market, which is why every other developed country (including fairly libertarian states like Singapore and Chile) has significantly more government intervention than the US does- since it's not really much like a free market, unless you are willing to accept many, many more deaths for people like my mother, which I am not.
Accepting Medicaid and, if memory serves, Medicare requires using a certified EHR/EMR system, and getting that certification is both time consuming and expensive.
You aren't just fighting the healthcare industry, but also well-intentioned government regulations.