The Healing Power of Your Own Medical Records • Hacker News Board

Re: The Healing Power of Your Own Medical Records

#11

Post by Someone » Tue, Mar 31, 2015, 9:50 PM UTC

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.

Re: The Healing Power of Your Own Medical Records

#12

Post by minthd » Tue, Mar 31, 2015, 10:08 PM UTC

Someone wrote: post #11

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…

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.

Re: The Healing Power of Your Own Medical Records

#13

Post by jtheory » Tue, Mar 31, 2015, 10:11 PM UTC

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.

Re: The Healing Power of Your Own Medical Records

#14

Post by justfooit » Tue, Mar 31, 2015, 10:15 PM UTC

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…

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.

Re: The Healing Power of Your Own Medical Records

#15

Post by therobot24 » Tue, Mar 31, 2015, 10:43 PM UTC

gleb wrote: post #9

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.

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

Re: The Healing Power of Your Own Medical Records

#16

Post by mcculley » Tue, Mar 31, 2015, 10:57 PM UTC

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.

Re: The Healing Power of Your Own Medical Records

#17

Post by pimlottc » Tue, Mar 31, 2015, 10:58 PM UTC

jtheory wrote: post #13

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…

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

Re: The Healing Power of Your Own Medical Records

#18

Post by drcross » Tue, Mar 31, 2015, 11:16 PM UTC

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

Re: The Healing Power of Your Own Medical Records

#19

Post by troyastorino » Tue, Mar 31, 2015, 11:29 PM UTC

justfooit wrote: post #14

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…

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'

Re: The Healing Power of Your Own Medical Records

#20

Post by Spooky23 » Tue, Mar 31, 2015, 11:45 PM UTC

therobot24 wrote: post #15

gleb wrote: post #9

Earlier quoted context omitted.

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!