I recently had to see a doctor. When he asked about a recent test result, I handed him a very small flash drive I keep in my pocket. I told him that it contained my last few years of test results and my most recent CT scan. He was delighted and went back to his office with my flash drive in hand. He returned dejected, informing me that the anti-virus system on his office desktop would not allow him to read the flash drive in accordance with corporate policy.
We are not quite yet in the future.
This is what I've done for a text file I've maintained since 2004 which has a log of every factor VIII injection I have received since as a haemophilia patient. It's in CSV format so I can easily import it into Excel to look for patterns in my bleeding episodes, which I do occasionally. I've been able to show it to doctors when I'm travelling and they need some convincing that they can give me an IV shot as an outpatient.
I only wish I had kept something similar for my weight over the years.
Also, "medicine for the rich" companies like Pinnacle Care and Private Health will do it for you as part of their services. And for a good reason, you need records to do anything else.
Whether you do it yourself, or have somebody do it for you - do it. EMR portals are nice, but not nearly enough, you need the real backend records.
Considering how private the information is, I would expect security to be a top priority. I would require at least an 'A-' on the rating. I realize that this does not indicate what is on the back end.
EDIT: Nevermind, app.picnichealth.com, right? https://www.ssllabs.com/ssltest/analyze.html?d=app.picnichea...
* What about data export?
* Why no 2FA? (or sign in via federated identity?)
* What is my guarantee that your price doesn't dynamically adjust, potentially hitting me hardest when I can least afford it?
Long story short: we get records any records that still exist.
All the while I was dealing with recovery actions from a health insurer that assumed that an unrelated ER visit was the root cause (and potentially not my health insurers problem)
Having this type of serve would have been awesome, and I would have gladly paid it!
The article touches on several important aspects of working in this space -- mainly, the benefits are real (even for people who aren't able to diagnose their own brain tumors), but there is cultural resistance to giving patients the "real" data. We've worked with medical professionals who are seriously uneasy about giving patients access to their own records -- sometimes for more sensible reasons ("a patient could easily misinterpret what this result means without context") but also fears that just don't materialize in reality (like "patients will bombard me with questions" -- as discussed in the OP).
Some of the resistance is curiously connected to the legal protections that healthcare professionals need to enforce on behalf of the patient. They're actively trained to follow laws that seriously restrict data-sharing, insecure storage, etc... and it takes a while for it to click that this is actually the patient's data, and the patient is the one person who has more right to it than anyone.
* The text on the first slideshow image cuts off abruptly: "Patients Know Best ('PKB') is the most integrated patient
portal and health information exchange. PKB is live in over"
* The patient signup link is hard to find. I left the patient page  thinking it was just an info page before realizing that the sign up link is there, all the way at the bottom after the letter from the CEO and 6 videos
* It's not very clear what regions you serve. Mentions of HIPAA led me to believe you might serve the US, but entering my California zip-code on the customers map  gives me results in Lithuania, the Netherlands, Germany and the UK.
It's amazing how many CPAP machines out there do not give the patient access to their efficacy data, and often, the data itself is hidden behind a secret clinicians'/provider-only menu. For a while (from 2006-2010), CPAP machines used proprietary smartcards and non-standard $100 readers manufactured in China to store the data.
I had to purchase a data-capable machine out of pocket since my DME only gave me a "brick" -- a machine that does not record any efficacy data. Of course, my insurance did not cover the slightly more expensive data-capable machine.
Patients with sleep apnea need efficacy data to track how their treatment is going (how many apneas they had per hour per night of sleep). Without this information, it's completely unclear whether the CPAP is set correctly to deliver therapeutic pressures, let alone actually help that patient's sleep. It is expected that the patient takes their CPAP machine every month or so to the doctor for the doctor to download and interpret the data for them, who may then adjust the titrated pressure settings on the machine based on the data. This, of course, is a trivial process that the patient can easily do on their own which can DRASTICALLY improve the patient's quality of life.
There's a blog with a ridiculous table of devices and advice for fighting the DME provider/insurance company for data-capable machines with such gems as:
"Ask for the System One Pro with C-flex Plus . . . (AVOID the System One CPAP Plus with C-flex -- not data capable). Note how confusing the names are as the Pro also has 'plus' in the name! To further confuse you, all the Philips Respironics machines are marked 'Remstar' but that name isn't really used anymore."
Imagine navigating the maze of complexities and argumentative DMEs/insurance companies while thoroughly sleep-deprived because you stop breathing 30 times per hour while asleep. That was me 3 years ago...
I also doubt the real gain is in spectacular cases such as the brain tumor in this example.
I find it way more likely that we will see some advanced version of IBM's Watson use that data to cross-correlate data and suggest things like "with your genes and current condition, you should use antibiotic X, rather than Y, even though Y is the better choice for most." or even "you should stay home today, or you'll be ill for 2-3 days."
Each such choice may only give a small gain, but there will be way more choices to make.
But i agree that the ideal result from opening all this up, is the rise of medical expert systems advising patients, the same systems that have been blocked by doctors, some of it because of conservatism, some because they don't want to lose autonomy and let their job become automated with what that entails.There's no need to wait for watson, they already exist.
And with the medical error rate around 15%, the fact that doctor only gather half the needed questions in their medical interview, etc. - i'm sure something like this could have pretty big effect on health.
That being said, learning is always good. I always encourage people to discuss anything they've read with me. I print out guidelines, trial data, etc in the interest of leveling the playing field and complete transparency. There's really no point in trying to maintain an information gradient.
Now the article is not about understanding your disease, but rather, having complete access to your medical records- which is a related but different issue. Unfortunately, 99% of people have no idea what people are writing about them and I find that really troubling. Not sure why, but patients still seem to feel that it's somehow antagonist to ask to have a look. Like it's some threat or precursor to a lawsuit. It's not. When I turn the screen and ask the family to gather around so I can explain stuff, there's often hesitation or even surprise - "What? Can I really look at that? Is that ok?". Yes You Can folks.
It's also worth noting that many of the "I had access to my own records and it was great" stories are of autodidacts who already know how to consume and digest complex information. The first story in the article is of a PhD student. Not everyone is like this, and that's worth remembering. A simple example is the vaccines-create-autism movement, full of people who aren't digging deep into the treatment or research. They see their child is affected, they are upset, and so they look for something to blame and rail against, causing lots of damage for other people.
People certainly feel a lot more in control if they can see what the experts are thinking about their condition, but there is some selection bias in the stories that accompany these articles. On the whole I absolutely think medical records should be shared with patients (except in certain cases, eg discussion of certain mental illnesses), but whatever guidelines we come up with should remember we're talking about an issue affecting "the general public" not "PhD students and medical scientists".