

The Healing Power of Your Own Medical Records - dnetesn
http://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html?ref=technology&_r=0

======
mcculley
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.

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

------
gleb
There is a YC company that will collect and maintain medical records for you.
PicnicHealth - [https://picnichealth.com/](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.

~~~
therobot24
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.

~~~
nogaleviner
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.

~~~
therobot24
Is there a point for which you don't collect info? For instance is it possible
to see records from my birth?

~~~
troyastorino
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.

------
jtheory
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.

~~~
pimlottc
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](https://www.patientsknowbest.com/patients.html)

2:
[https://www.patientsknowbest.com/customers.html](https://www.patientsknowbest.com/customers.html)

------
Hydraulix989
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/](https://maskarrayed.wordpress.com/)

------
Someone
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.

~~~
minthd
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.

------
blueatlas
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?

~~~
sithu
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.

~~~
vacri
_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".

------
clamprecht
Mint for medical records. I want it.

