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The Healing Power of Your Own Medical Records (nytimes.com)
73 points by dnetesn on Mar 31, 2015 | hide | past | web | favorite | 28 comments



I've tried to take responsibility for my own health records. I've diligently over the last few years scanned in various bits of paperwork and downloaded test results.

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.


Good on them. Sticking random flash drives into hospital computers seems like a good way to compromise medical records.


You should have brought it on a (excuse the pun) tablet.


You could put a copy on Evernote (or a similar platform) which can then be viewed even on a smartphone, if you carry one.

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.


There is a YC company that will collect and maintain medical records for you. PicnicHealth - https://picnichealth.com/ I am a customer, recommended.

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.


I was just looking at the SSL labs rating on the web site. It only gets 'C'.

https://www.ssllabs.com/ssltest/analyze.html?d=picnichealth....

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.


Thanks for pointing that out! Just fixed the outstanding SSL config issues for the marketing site, and brought it up to 'A'


If that's not the actual app site, could you give us the SSL report for the real one?

EDIT: Nevermind, app.picnichealth.com, right? https://www.ssllabs.com/ssltest/analyze.html?d=app.picnichea...


Just checked out your suggestion, i agree that the aggregation is nice, but $40/month for something i won't actively use but a few times a year is quite expensive.


PicnicHealth CEO here and happy to answer questions. We're starting with the people who need the product most, so our customers tend to be pretty sick and have a ton of records going back and forth and sometimes multiple doctors appointments per week. We've brought the price down a lot from the companies that do record collection/aggregation for insurance and pharma (about $1000/patient just to start) but stay tuned for an even lower priced option for those with less intensive needs.


Since you're happy to answer questions:

* 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?


Is there a point for which you don't collect info? For instance is it possible to see records from my birth?


We get records as far back as we can. Unfortunately, records that are more than 10 or 15 years old are often destroyed. Offices are only legally required to keep records for a certain period of time (e.g., for 7 years in California), and so after a patient leaves a practice, the practice will typically clear out that patient's records at some point.

Long story short: we get records any records that still exist.


Agree. This service sounds interesting, but as an infrequent consumer of health care, this subscription model doesn't make sense. I would be interested in paying a flat fee to get my records. Then pay again in a year or two to have them updated. Wondering if the cost of obtaining the records is so high, that they need the subscription to run for x months to recoup? Maybe a hybrid approach would work: $5/mo to keep the account active, and then a user-initiated update feature at $40 a pop.


I agree. Think their price point is too expensive for most healthy consumers, so they are currently positioned for people who have a significant need to use them.


but don't those who would have a significant need be those who wouldn't necessarily have the $40/month for the subscription


When I had back problems, at one point I was doing PT 3x a week, seeing a neurosurgeon and a few other physicians.

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!


fair enough, i guess i was thinking more in terms of elderly or those who have a chronic illness where money is heading primarily to medical bills (from the many treatments)


This is what we do! I'm at Patients Know Best; we've been live for a few years now, and the momentum continues to grow -- this is an issue that is hitting a tipping point.

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.


This sounds great, so I went to check it out. A few issues I noticed on the site -

* 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 [1] 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 [2] gives me results in Lithuania, the Netherlands, Germany and the UK.

1: https://www.patientsknowbest.com/patients.html

2: https://www.patientsknowbest.com/customers.html


I have sleep apnea and have to use a CPAP machine by wearing a mask that pressurizes the air that I breathe while I'm asleep. The pressure keeps my airways splinted open so that when my muscles relax during REM sleep, my airways don't collapse, causing me to stop breathing and choke in my sleep. Among many other health complications, these apneas destroy the quality of my sleep, and without my CPAP, I cannot physically or mentally function.

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...

https://maskarrayed.wordpress.com/


I doubt individuals studying their own records and diagnosing themselves is the big thing that comes from opening up patient data. Most people lack the combination of intelligence and tenacity to do that.

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.


I think you don't account how little time doctors invest in a single patient, and how much expertise they've got compared to the net. And on the other hand, many patients have a lot of tenacity ,because those are large problems for them.

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.


My initial thought is how long will it take doctors to cross-over to acceptance of patients having more data and coming to see them well informed. Experience comes with age, and many of our doctors today just aren't use to being given detailed data by their patients. It will happen, but right now I don't feel that this is the case. Will it be 10 years, 20 years?


Patients who know their conditions to the extent that they're able to have a well informed discussion with you at the visit are still quite uncommon. Most people google their diagnoses and glance at the top 2-3 hits, but very very few really dig deep into the guidelines, physiology or publications to see if what is being recommended makes sense. I think there's still a lot of faith being placed in experts, which in my opinion is appropriate because the likelihood of someone misunderstanding what they've read still exceeds the chance that they've uncovered ways to further optimize.

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.


the likelihood of someone misunderstanding what they've read still exceeds the chance that they've uncovered ways to further optimize.

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".


I am an MD, and this happens all the time right now. It has been happening consistently for at least 10 years. Grab your hoverboard, son, this is the future.


Mint for medical records. I want it.




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