Self-Registration: A person-centered approach to recording symptoms, observations, and outcomes.

Originally published at:

This post is an attempt to capture some of what I’ve learned preparing for a webinar organized by Susannah Fox called “Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data.” This is part of a webinar series called Advancing clinical registries to support pandemic treatment and response, which is organized by a nonprofit called Council…

Fascinating idea. I read only lightly but from what I gleaned it’s proposing decentralised data storage allowing for lightweight use and access.

I’m curious how the data storage and access could be both robust enough to be useful, and flexible enough to be easily captured and recorded.

I feel like the trick would be to avoid the temptation to over-engineer the solution, but rather figure out how to work with what already exists. Thinking less about research and more about treatment / cure I imagine the last thing a doctor needs is to try to get a patient to download something new, do something new, etc. But if for example data that’s already collected could be somehow harnessed… Through phone or app etc.

I can’t help but try to engineer new layers of complexity regardless how I try to look at it.

The simplest version I suppose would be a framework to guide a conversation about data. For example if a doctor could read through a list and immediately discover what level of data collection a patient is already engaged in, that they’re aware of and maybe even unaware of.

To overengineer after that… a flowchart exploring different levels of data analysis or access rights based off of permission and whatever is available. Even if that were as simple as for example ‘Could you put the email addy of your fitbit account into this box?’ and then tick a series of data sharing permission options, date ranges etc.

Probably something like it could be done for basic phone data too, at least to a small degree.

The super simple version would probably look like a continuation of that conversation framework about data collection and a flow chart to find the simplest route to meaningful action through what data the patient is interested in / collects.

One potential obstacle could be with how anti self empowerment the standard medical education model sits (and the huge reform needed to lower pharmaceutical industry profit driven manipulation of patient doctor relationships).

Curious what would the proposed system look like in it’s smallest form? A set of principles for self data storage, combined with a set of guidelines for asking about and accessing ‘patient’ self data?

Brings to mind this joke I heard.

An engineer yells with frustration; ‘Why are there 12 different versions for the same transfer?! Let’s combine the best of them and create a universal standard.’ And thus the thirteenth version was born.