Looking for an app to store and pull all my personal and family medical history in. Suggestions?
I’ve been thinking of dumping all my unstructured medical record forms into Evernote or OneNote for their automatic OCRing. You could then do some organization by person and date, at least. Or are you looking for something that will understand the data in a structured way?
I am looking to build a family and extended family medical history ( parents, siblings, grandparents, aunts, uncles, and cousins ) Also I would like to build my own medical history. All in one app would be great
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Sounds very valuable. What pieces of information would you be most interested in? Are you hoping to learn things from the information or just have it accessible for when you might need it?
By the way, I work at PatientBank, where we could certainly help you request your medical records (for you and your family). Though we haven’t done much to make the experience of viewing/structuring your records that helpful (thus my questions). Would be very interested in your insight. Thanks!
I would like to use it possibly to compare but mainly to also be able to inform my doctors. I personally don’t know all the medical history of my grandmother ( did she have a genetic disease? ) I would like to speak to my parents and be able to collect as much family history as I can. Then have it stored nicely so I can share it is any doctor as well as possibly use it to gain insights of my own health. I feel that my medical records and history is very dispersed
HHS tried to create an online service to capture your Family History. Apparently it did not take off.
Interestingly some of your family medical history can be derived from photos (for example thyroid issues).
There are also the genealogical records like death certificates.
You can also work within HIPPA restrictions on deceased parents if the information is to support your doctor in deciding on your health issues.
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Paul, you mentioned that you can gelp request records for family. Is this just for children, or could it be used for parents and siblings? Do they need an accont too or to sign something to allow my access?
Could you provide more info about the deceased parents bit? I know very little about my father’s medical history other than the Lymphoma he died of. And every doctor I see lately wants to know more than that.
I use a google sheet for this. One tab for paternal and one tab for maternal. Rows are categories (neurology, cardiac, etc) and columns are family members by relationship. The first few rows are birth year and year of death if applicable.
Not at all limited to children—anyone can request for themselves or for someone they have a legal right to request for (i.e. parents of children under 18 of via a Power of Attorney). I’d recommend getting started by searching for a doctor or hospital here: https://www.patientbank.us/search.
There are a few projects you should look into:
FHIR-Chain will allow patients to own their health record data just like a person can own a bitcoin wallet. It is the next big thing in medical records.
Andaman7 also has the goal of making patient records more accessible to patients:
I share your need for a family medical history. I am currently working on an Excel Dashboard that aggregates health data from smart phones and health records into one place. I can get medical records and labs into Apple’s health kit but I don’t know enough about FHIR to import that JSON data into Excel. I wish the QS tool allowed us to export labs into CSV format. Maybe it does and I just don’t know. Has anyone had any luck doing this?
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