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The Healing Power of Your Own Medical Records

nytimes.com

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Re: The Healing Power of Your Own Medical Records

#21

Post by beering »

mcculley wrote: post #16

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 bac…

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

Re: The Healing Power of Your Own Medical Records

#22

Post by nogaleviner »

therobot24 wrote: post #5
gleb wrote: post #3

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 ni…

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.

Re: The Healing Power of Your Own Medical Records

#23

Post by therobot24 »

Spooky23 wrote: post #20
therobot24 wrote: post #15

Earlier quoted context omitted.

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)

Re: The Healing Power of Your Own Medical Records

#24

Post by 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/

Re: The Healing Power of Your Own Medical Records

#25

Post by therobot24 »

nogaleviner wrote: post #22
therobot24 wrote: post #5

Earlier quoted context omitted.

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…

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

Re: The Healing Power of Your Own Medical Records

#26

Post by kranner »

mcculley wrote: post #16

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 bac…

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.

Re: The Healing Power of Your Own Medical Records

#27

Post by vacri »

sithu wrote: post #8
blueatlas wrote: post #4

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 m…

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".

Re: The Healing Power of Your Own Medical Records

#28

Post by troyastorino »

therobot24 wrote: post #25
nogaleviner wrote: post #22

Earlier quoted context omitted.

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…

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.

Re: The Healing Power of Your Own Medical Records

#29

Post by pimlottc »

troyastorino wrote: post #19
justfooit wrote: post #14

Earlier quoted context omitted.

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...

Re: The Healing Power of Your Own Medical Records

#30

Post by groby_b »

nogaleviner wrote: post #22
therobot24 wrote: post #5

Earlier quoted context omitted.

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…

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?

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