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Ask HN: How do you maintain your medical record?
I am in a location where not every hospital/clinic is digital and not neccesaily one can have access to others. In this case I have to always maintain and carry the thick file of prescriptions and reports with me for every visit . Is theer a open source tool or web based tool where records can be maintained chronolgically for me and family members.
- perceptronas 7y agoIf I were you, I would scan documents, name them chronologically and that's it. Safe and simple
- isatty 7y agoSame but I’d also never use anything cloud based to do this. The risk vs convenience doesn’t add up for this use case.
- gumby 7y agoI do almost that but have a format for the filename: yyyy-mm-dd-{prescription,lab_result,...}-xxx.pdf so could be lab_result-CBC or prescription-rosuvastatin etc.
- vortico 7y agoYeah, I don't understand the need for software/apps/SaaS's that can be functionally replaced by files on the filesystem (in this case) or a text file (for note-taking tools). Simple files should always be the first attempt at organizing digital media. If it's insufficient for some reason, the OP should describe what they've tried and why it was insufficient.
- AidanCS 7y agoThe purpose of software/apps/SaaS is to not simply storedata. If that were true, a file repository works. The purpose of a personal health record platform is to help you make sense of your data and help you make better decisions relates to your health. A lot of comments have focused on typical doctor visit. Consider, 450 million people globally have a mental illness. Digitized records have a huge potential to support self-management of chronic conditions.
- vortico 7y agoThe question in the original post was >Is theer a open source tool or web based tool where records can be maintained chronolgically for me and family members. A file repository satisfies these requirements. If it's insufficient for the original poster, then there are other unspecified requirements.
- pwg 7y agoThis.... The OP does not need a 'tool' -- beyond a filesystem and a naming convention such as suggested by @gumby. Make a folder hierarchy that makes sense (and do not worry about getting the hierarchy 100% right up front, it can be adjusted as usage indicates what should have been). Scan paper docs to an image format, create plain text for any 'notes style' docs you want to keep. This is a perfect example where the KISS [1] principle is very useful. With a naming convention as suggested by @gumby, finding particular items later is either navigate to the folder they are in, open appropriate file, or a simple search of the filesystem for keywords (i.e. a "find | grep" pipeline on Linux/MacOS or the equivalent on Windows). Portability for office visits can then be as simple as carrying a USB stick with a copy of the filesystem, or carrying another device (laptop/cellphone) with a copy of the filesystem stored thereon. [1] https://en.wikipedia.org/wiki/KISS_principle https://en.wikipedia.org/wiki/KISS_principle
- faitswulff 7y agoDropbox’s “scan document” feature names the file with a timestamp by default and also crops, transforms, and color corrects (black and white or “whiteboard”) the image as well. It’s really Dropbox’s killer feature for me.
- kapep 7y agoJust going by the type of content (appointment dates, scanned documents, maybe contact data for doctors and hospitals) I would probably look into general calendar and note-taking apps. Maybe there is some better, specialized software for this, but I would worry that it would be so niche or technical that no relative would know how to open the files when needed. Using some more common format would have an advantage here.
- marcinzm 7y agoNever used them but this company claims to pull them together, parse them, etc.: https://picnichealth.com/ https://picnichealth.com/
- krishna0512 7y agoDon't know about you. But this website only works for very specific hospitals / doctors Didn't sound like a very good idea to me.
- marcinzm 7y agoAs I understand it they can request paper/fax/cd records from any doctors given your authorization. Just takes longer than an API call to a portal.
- foolinaround 7y agoInteresting question... this is one I have thought on and off, and I have a hodge-podge of paper reports and scans, with evernote- to maintain the digital notes, and google drive for the scans. -- One could customize an open source CRM for this?
- krishna0512 7y agoThat's an interesting solution (CRM). I am assuming it is not a difficult solution, could probably be done with a weekends worth of effort.
- fab13n 7y agoAs read from Europe, it's really scary to realize that this question makes sense in a first world country.
- jotm 7y agoHow so?
- frabert 7y agoEvery medical interaction is recorded on a nationwide network - at least here in Italy. Every time I go to my doctor and they prescribe me something / they give me a shot / vaccine, it gets recorded and every other doctor can access the same data when I present my "health smart card"
- c0restraint 7y agoThat sounds both amazing (from a patient in need POV) and scary (from a privacy POV). I’m interested in both
- judge2020 7y agoIt sounds like a great system assuming the smart card is a like a credit card with the chip in it, and you needed that to view medial records. Unfortunately I seriously doubt that's the case.
- frabert 7y agoIt's actually a smart card with a chip in it. It also has a magnetic stripe, I guess for legacy purposes. Here is a sample: https://www.sanita.puglia.it/documents/20182/134679/TSCNS+fronte+%28puglia.gif%29/eeaf006f-5db5-4b6f-bb2c-fa45ace23196?t=1448290285227 https://www.sanita.puglia.it/documents/20182/134679/TSCNS+fr...
- n0on3 7y agowell, to be honest, this sounds like kind of overselling reality. There is a system in place that tracks and records some things, like days off prescribed by base doctors, prescriptions for which national care pays and few other stuff, but most of everything else, including charts from when you are admitted in most hospitals and of course whatever you do outside of the public care (which kind of sucks and has insane waiting times, which means you most often do) is not included in that. So.. nope.
- Stronico 7y agoMy daughter's main health c are provider has something called "My Health" which is okay - I presume the doctor's have a better system. Something that maintains it on a timeline would be wonderful (that's how I remember it anyway). I guess a better question is - is that something that anyone would pay for? Or maintain? I currently just scan everything into onenote, which works, but is suboptimal.
- oefrha 7y agoI use an encrypted disk image with properly categorized and dated documents (digital or scanned) for each type of records.
- 4ndrewl 7y agoWhich country are you from? UK here - even the thought of having to do this sounds weird.
- SoulMan 7y agoI am in India, I do some kind of Google Drive/drop-Box but its hard to organise
- allard 7y agohttps://en.m.wikipedia.org/wiki/Google_Health https://en.m.wikipedia.org/wiki/Google_Health → https://en.m.wikipedia.org/wiki/Microsoft_HealthVault https://en.m.wikipedia.org/wiki/Microsoft_HealthVault → Lydia
- jklein11 7y agoIf you dont mind me asking where are you located?
- SoulMan 7y agoIndia
- jacobwilliamroy 7y agoI think youre on the right track with this folder thing. My only suggestion is to make a photocopy to carry around and keep the original in a safe place.
- deleted 7y ago[deleted]
- drakonka 7y agoI've never thought about it for myself to be honest. Where I live I can log into a central website called 1177 (which is also the phone number you can call to talk to a nurse over the phone for advice if needed) and see all of my visits, doctor's notes, and test results from different clinics. Maybe if I had a more extensive medical history and had to visit more obscure clinics etc I'd request printouts of my test results and such. I have thought about this for my cat, however. The vet clinics here also regularly transfer journals to each other as needed, but I don't have access online the way I do for my own journals. Unlike myself (knock wood) my cat has had extensive medical issues as a kitten and has a very long set of journals from different locations. Every once in a while I ask the current hospital we frequent to send me a copy of his journals. Sometimes they give me physical copies and other times they send them via email, and I be sure to have these on-hand just in case I need to provide them in a rush to an emergency clinic.
- cstanton 7y agoI traveled full-time for 3 years with my wife and dog in an RV. We luckily didn’t have any medical stuff come up, though getting some prescriptions filled in different states was a HEADACHE. For our dog, we use PawPrint, which is a mobile app. They request medical records on our behalf and digitize them. Their monetization model is to sell pet insurance, which we have with another carrier. Nice, convenient.
- 2rsf 7y agoI see only a small part of my test results on the Swedish 1177, I think that it depends on the Län (district) and specific clinic, for example "private" ones
- carbocation 7y agoI currently use a synced word document because I don't trust the longevity of any of the current software offerings. If it stands the test of time, Apple Health has done a really nice job of pulling in all of my medical records (including vaccinations, etc).
- richb-hanover 7y agoSeveral years ago, there was a big push to use Blue Button as a means of downloading your medical records. (It seems that HealthIT.gov still talks about it. https://www.healthit.gov/topic/health-it-initiatives/blue-button https://www.healthit.gov/topic/health-it-initiatives/blue-bu...) The notion was that you could securely retrieve your info from all the sources and keep it locally (on a flash drive) There was also Javascript implementation of the protocol, but that seems to have been archived https://github.com/blue-button/bluebutton.js https://github.com/blue-button/bluebutton.js Can anyone tell if there's activity there now?
- nwhatt 7y agoThe industry more broadly is moving towards OAuth. https://bluebutton.cms.gov/ https://bluebutton.cms.gov/
- kasperni 7y agoIn Denmark, we have a central registry for health information where all information is shared between medical practitioners and hospitals on a need to know basis. We also have sundhed.dk (would translate to health.com) which all citizens can log into. Here you can: - See upcoming appointments with hospitals or doctors - Sign up for organ donation or do not resuscitate orders - Information about hospital visits 50 years back (records have been digitized) - All your dentist visits, what kind of treatment you got, how much did you pay. - X-rays are digitalized and you can download them if you want to. - Lab results with explanations and tracking over time. - All the medicine you have bought and prescriptions you might have. - Your treatment plans which can be coordinated between medical practitioners and hospitals You also have access to all information about any children under 15. And you can give access to information of your choosing to next of kin.
- hkiely 7y agoDo you know how the system works, when you download laboratory values and different facilities have different reference ranges?
- kasperni 7y agoNo idea, sorry. I don't know how big of a problem this is in practice in Denmark. I know that audits are performed on a national level. So I assume this would be less of an issue compared to countries where the health care system is very decentralized.
- hkiely 7y agoIf you ever want to share and blur out information, I would love to see screen shots of the portals where all of this comes together. Everything is more expensive in Denmark. Does that VAT that you pay, get applied directly to the healthcare system?
- kasperni 7y agoWe more or less only pay for prescription medicine (out of hospital) and dentist. And both of those two are highly subsidized by the government. VAT does not go directly into anything particular but is just a general income for the government. Some background about e-health in Denmark: https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-in-denmark/background/ https://www.sundhed.dk/borger/service/om-sundheddk/ehealth-i... https://vimeo.com/109787633 https://vimeo.com/109787633 (1 minute overview) https://healthcare-in-europe.com/en/news/e-health-in-denmark.html https://healthcare-in-europe.com/en/news/e-health-in-denmark... https://www.slideshare.net/HealthcareDENMARK/e-health-in-denmark https://www.slideshare.net/HealthcareDENMARK/e-health-in-den... https://www.eiseverywhere.com/file_uploads/27205cdba716d941ef0baded9b8481de_TheDanishcase_HIMSS_Nordic17_PDF.pdf https://www.eiseverywhere.com/file_uploads/27205cdba716d941e... Portal Functionality: https://www.aps-ev.de/wp-content/uploads/2018/05/WS-14_Peterson.pdf https://www.aps-ev.de/wp-content/uploads/2018/05/WS-14_Peter... (2018) http://data.nczisk.sk/konferencia_2010/bruun-schmidt.pdf http://data.nczisk.sk/konferencia_2010/bruun-schmidt.pdf (2010) https://www.longwoods.com/content/19658//the-national-danish-e-health-portal https://www.longwoods.com/content/19658//the-national-danish... (2005) https://www.charlietango.dk/work/sundhed-dk/ https://www.charlietango.dk/work/sundhed-dk/ (The app) Other articles https://www.researchgate.net/publication/317140742_Building_National_Healthcare_Infrastructure_The_Case_of_the_Danish_e-Health_Portal https://www.researchgate.net/publication/317140742_Building_... https://www.researchgate.net/publication/258115827_eHealth_in_Denmark_A_Case_Study https://www.researchgate.net/publication/258115827_eHealth_i...
- hkiely 7y agoI’m not really sure how far blue button has integrated past the VA. While you may be able to retrieve your records and bring them with you on a flash drive, they might still be in a proprietary format such as a Lucy file. If you have complex medical issues - most of the clinicians at the leading academic medical centers want paper. The best way to do this, is to simply get a copy of the clinic note, if it is not included in the discharge summary. Scanning files into google drive is a way to archive them. You can quickly print notes and carry them in a binder with tabs when needed.
- deleted 7y ago[deleted]
- egp 7y agoI recommend researching https://www.recordsforliving.com/HealthFrame/ https://www.recordsforliving.com/HealthFrame/
- ijustwanttovote 7y agoCiitizen helps cancer patients get medical records even if they are in paper form and digitizes them. https://www.ciitizen.com/ https://www.ciitizen.com/
- throwaway2019V 7y agoIn the U.S. After a health scare, I personally called every clinic I've ever been to and asked to be faxed my records. I remember they charged a small fee (maybe 25 cents per page or something). It was tedious, but now I have my files on my hand whenever I need them.
- siwyd 7y agoI bookmarked this once when stumbling across it: https://librehealth.io/ https://librehealth.io/. It's an open source Electronic Health Record keeping system, so sounds like it might suit your needs.
- Spooky23 7y agoJust stick it in a big Google Doc or Word doc. Have a few folder or different docs if need be.
- gpinkham 7y agoBackpack health makes one. Can use it for free. Has multiple languages. Medical dictionaries etc. (Disclosure I used to work there) httpss://www.backpackhealth.com/
- BrandonEli 7y agoI don’t know if this helps anyone, but I was adopted and I found out two years ago that I has a sister, I tried finding her on my own , but I failed at e very attempt to do so… I then Hired VIRGO ( VirgoEagle at proton mail . com) to help me find her, I provided some details and background history. Virgo found my sister and we met for the first time on over 24 years, it was the best day of my life. Virgo is a private investigator, who has a miraculous way of finding people.