It’s a funny, thing, isn’t it, how much harder it is for patients to receive test results than it is for their doctors. For example, on a standing order blood test, there apparently is no “space” in my local hospital’s registration software for the patient to automatically receive the results. While two doctors do, I have to go to the medical records department every time I have my blood taken to request that the results be sent to me.
That is, if that even works. I first attempted this a week ago and although I was called by one of my doctors within a day with the results, I still have not received them myself. And this is a small hospital with not a lot of records processing to keep track of.
I think the area of medical records may also be one of the only contexts in which people still must use fax machines (that is, if they want to move things along a bit faster than the mail will provide). In any context, to release my own medical records to myself, I have to fill out a form, sign it, and either mail it or fax it. (Because I live in a rural area and do not live close to most of my health providers, I can’t just deliver it in person).
And if what I want is a scan, sent either to me or to a doctor, it must be sent on a physical CD.
Even if you have not experienced this yourself, you can probably imagine how difficult it is, when someone confers with multiple doctors, for each of those doctors to actually have a full record of that patient’s treatment. This is because making sure everyone gets everything becomes nearly a full time job. (Keep in mind that not only do the forms need to be sent, but follow-up phone calls as well to make sure they were received and acted upon.) And incomplete records create pretty good starting conditions for potential mistakes to be made.
And if mistakes are made in this context, who is at fault?
The current push for computerizing medical records (finally at least getting more emphasis) is both incredibly slow, and unfortunately, being done completely the wrong way. Because while hospitals are finally getting stuff on their internal computers, this does not solve the above problems: patient access to records, which is an essential requirement for many of us trying to wend our way through the medical wilderness, will still be just as difficult and bureaucratic as it ever was. And there is, of course, no need for it to be this way, given current technology.
Imagine now a world in which all test results, scans, and doctor’s notes are uploaded to a central database for each patient, accessible via the internet, with the patient having complete access and complete control over access. Patients could thus assign a username and password to anyone he or she wants, in order to see all the records immediately – or even have different levels of access, if you want the person only to see one relevant part of the record. (For example, insurance companies could only see what you allow them to see – the privacy and access halves of the equation both work for the patient.)
For the doctors who still rely on hand-written notes, well, they just need to join the 21st century, or at least hire someone to do it for them. This is not an outrageous expectation, given how computers already infiltrate every other aspect of our existence, including medically.
In this world, I wouldn’t always have to be FedExing CDs of scans all over the world; I could actually just email a username and password to the doctor in question, and be done. (There is, to be fair, at least one third-party service that provides medical record storage, but the patient would still be responsible for getting all the records there in the first place, and it’s unclear that there is any way to upload scan CDs.)
But the world we live in right now is one in which most patients don’t even have a clue what’s in their files, let alone have the know-how and/or energy to find out, because you can’t even just ask your doc’s receptionist for a copy of your own records as you leave.
And yet, here we are, finally acknowledging that patient records need to all be on the computer, but there is still a catch – I can’t even look at my own records without the filter of a doctor or a bureaucrat. Does anyone else find this ludicrous?
Why is it this way? It’s possible there is some component of foot-dragging. After all, as far as getting records on computer in the first place, there is an up-front cost, which is why most hospitals and doctors have to be ordered to do it through Obamacare.
But I think there is something more, which is that the medical community just can’t let go of their legacy of paternalism. I’m guessing there are doctors out there who hate the idea of their patients having easy access to their own records. I’m sure fear of lawsuits underlies some of this, which is why I agree with those who support real tort reform (as long as it still guarantees clear ways to censure doctors who make real, avoidable mistakes). But I doubt that is the only reason. I honestly think it never crossed the mind of anyone developing electronic records software to figure out a way to allow patient access to it. In fact, they probably spent a lot of time making it ultra-secure and as inaccessible as possible.
It’s tough being a full-time patient. We’ve all heard the calls to “take charge of your own health care” but if you haven’t permanently entered the Medical Industrial Complex yourself, or with a loved one, you don’t know the half of it, especially in an area such as oncology in which the “standard of care” delivered dutifully by doctors is pretty much guaranteed to have few long-term effects beyond a miserable death. Well, if the Complex can’t do better than this, then why make my life doubly hard by making me waste so much of my time left on earth filling out forms and placing endless phone calls to make sure the instructions on those forms have actually been carried out? Why?