3

I am looking to organize and centralize all my personal health data in a machine-readable format on my self-hosted private server. My intention is to have a consolidated, single source of information that encompasses a variety of data points such as:

  • Events: This would cover the spectrum of my healthcare interactions such as doctor visits and various medical tests I've undergone along with their results.

  • Medical Records: I would like to incorporate the patient records I've received from healthcare providers. These should include information such as diagnoses and prescriptions.

  • Personal Health Measurements: I am also interested in integrating self-measured data like blood pressure and weight to this data repository.

My motivation for this endeavor is the belief that an open standard could facilitate an ecosystem of applications designed to enhance usability of such data, offer insights, provide reminders, and so on.

Is there an existing open standard that caters to the requirements I have mentioned?

Improve this question

1 Answer 1

Reset to default
1

Some existing open standards:

  1. Phenopackets
  2. FHIR

"Developer-friendly" is a subjective term, but there is a lot of Python tooling around Phenopackets, lots of example JSON files, example notebooks, and it's designed to be fairly simple. However it is more geared towards rare diseases and is less geared around representing simple healthcare encounters. However, extensions may be possible in the future and you would be welcome to post questions on the GitHub trackers (I am involved in the Phenopackets project).

FHIR is more geared around healthcare encounters. There are profiles for Personalized Health Devices. It may take you longer to get up and running with FHIR if you are not already involved in clinical informatics.

Both can be used in combination with a wide variety of ontologies.

You may also be interested in the Open Humans project. Although it is not not a standard or ontology, you can find likeminded people interested in open sharing of personalized health and other data.

Improve this answer

Your Answer

By clicking “Post Your Answer”, you agree to our terms of service and acknowledge you have read our privacy policy.

Not the answer you're looking for? Browse other questions tagged or ask your own question.