The DIY ePatient: democratizing science and health

Aleida Lanza aleida@autism-u.com

Abstract

The explosion of self-tracking apps and devices is de facto evidence we have been underestimating the ePatient’s ability to take control of their health in a meaningful way. These first steps toward empowering the ePatient have produced a lot of data, with very little analysis. The proliferation of health trackers merely beg the democratization of science for better health, which have yet to deliver analysis. This void dooms these magnificent tools when they are relegated to a drawer after six months, when they lose their ability to prove long-term value as ambassadors to health.

Enter the DIY ePatient: In order to change the paradigms of delivery of treatment, meaningful use, and collaboration, we must empower the ePatient with tools that, like bionic limbs, give them a digital reach that can mitigate their need for assistance. It must necessarily begin with defining a new democracy in health care delivery, which recognizes that in leveraging technology, we can also leverage science, to improve treatment rates and better outcomes. The self-tracking devices can now be self-modification devices that will earn their place out of the drawer, and on the night stand.

It was a team effort to develop the technology that would emerge a DIY ePatient, and we are honored to introduce you. This particular ePatient can follow guided prompts whose decisiontree model includes the science of errorless learning, a ripe setting for assuring success. 

Leveraging Technology: So far you’ve heard general terms about how nice it would be to empower the ePatient with Do-It-Yourself treatment, and how they crave analysis, the hallmark of a clinician. Regretfully, in many instances, it is the hallmark of a broken system that reserves delivery of care to a very fortunate few.

Autism is a prime example. There are only 15,080 clinicians licensed in the primary treatment for autism (Applied Behavior Analysis or “ABA”), and with a population approaching 5M, the treatment rate is 1:308. Currently, less than one percent of individuals with autism have access to ABA, which can mean the difference between language acquisition, or not. Despite noble advocacy efforts for insurance coverage, the services do not reach those in need. Until now.

We trusted our ePatients enough to give them the keys to science. Developing dynamic assessments served only to predict individualization. This is typically the place that science stops trusting us all to know what to do. We have been taught to surrender our health at this critical intersection, which never had a green light installed, or road to traverse beyond listening to the advice of our health care providers. We never dreamed we could go beyond this place, where specialized degrees and practicums are sealed to precious few professionals.


Leveraging Science: After assessments, the DIY ePatient comfortably moves ahead toward baseline, treatment, and management. Every safe and ethical intervention is availed for their use. They select a treatment plan, and collect data. This axis point is traditionally a lonely point for the ePatient, where health information privacy laws (HIPAA) serve only isolate.

We wondered what would happen if this axis point was social. We found its exponential power by digitizing HIPAA, and once again entrusting our DIY ePatient with the ability to invite participants into their self-created individualized implementation plan, and entrusting them to give feedback. Science is now social, and HIPAA serves as the mechanism to cure isolation and the silo effect of our current health data approach. 

Making mHealth Healthy: Building a road beyond assessments requires massive engineering. Individuals with disabilities and without access to treatment inspired us to translate, and democratize ABA so they not only have access, they deliver treatment. You can code standards and ethics intuitively, freeing up clinicians to work on more priority cases alleviated by the self-managed ePatient. As of today, we have effectively created the means by which ePatients can meaningfully use technology, connect tracking devices to a behavior intervention plan that delivers analysis, and promote collaboration while advancing their health.

Crowdsourcing analyzed data is the next generation of democracy in health, where ePatients are trusted with errorless and ethical tools that will mobilize health. We encourage careful consideration in designing tools, devices, and applications that are scientifically robust in synthesizing data. Democratic design will empower both the ePatient and Clinician to contribute their efforts toward advancing better health and access to treatment.

Giving access to treatment to the more than 99% of any population with a challenging health issue is worth it. We hope it inspires you to see their progress.
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