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A novel conceptual

architecture for personcentered health records


Titus Schleyer, DMD, PhD1,2, Zachary King, MS3,
Zina Ben Miled, PhD3
Department of Medicine, Indiana University; 2Regenstrief Institute;
3
Electrical and Computer Engineering Department, Purdue School
of Engineering and Technology
1

The why
Health information (HI)
should flow like water
fast, slow, around
obstacles
but, ultimately,
unimpeded.

Omni Homestead, VA, T. Schleyer, 2016

How we store healthcare


information right now
difficult to access for
patients and clinicians
organization/eventfocused
one-size-fits-all
model of electronic
health records (EHR)
Yet, we manage data
in our lives (fairly)
efficiently.
Siloes, PA, M. Batchelor, 2016

A proposed framework: Benefits


consolidate and organize data so
patients and clinicians can access and
understand them
enable targeted preventive medicine
tailored to individual patients
facilitate large scale studies and
promote patient engagement

Recent progress in digitizing


healthcare
migrating legacy EHR to enterprise-level EHR
systems
93% of non-Federal acute care hospitals adopted certified
EHR systems by 2014
Epic3 EHR covers ~200m patients in US.

facilitating EHR-to-EHR interoperability


50% of office-based clinicians and 80% of hospitals can
exchange patient information in basic fashion.

enabling EHR-to-Patient/PHR exchanges


More than 57% of providers offer patient portal solution.

ONC vision
enable individuals to manage their own
health information
share it with their health care providers
enable health care providers to
individualize diagnosis and therapy and
adapt it to the patients condition in realtime by 2025

Personal health records:


Projected adoption

Ford EW et al., Personal Health Record Use in the United States: Forecasting Future Adoption Levels, J Med
Internet Res, 2016

Proposed framework

Registration & personalization


personalization by:
gender
birthdate
other factors (e.g. location)
patient-driven data collection

Data management
MongoDB/BSON
arrays for high-velocity data
MongoDB documents
primitive documents
extensible

(1) Basicinformation
{uid:p111,
firstName:Susan,
lastName:Smith,
gender:female,
dob:ISODate(4/1/1966),

address:{
streetAddress:723W.MichiganSt,
city:Indianapolis,
state":IN,
postalCode":"46202"
},

(1) Observation
{uid:p111,
oid:p111_o001
type:officeVisit,
date:ISODate(4/1/2016),
symptoms:[fatigue,],
measurement:[p111_m002,p111_m010,
],
diagnosis:[
condition:{gestationaldiabetes,
p111_cond005]

},
performedBy:d555,
prescription:p111_pr001,
documents:[p111_doc012,p111_doc013,
],

(1) Measurement
{uid:p111,
mid:p111_m001
type:glucoseLevel
mapping:[anotherName,.],
aggregationType:monthly_average,
ordered_by:d555,
device:p111_devID

reading:[
{20160114T10:50:42,100},
{20160115T11:20:21,120},
]
}

(1) Relation
{uid:p111,
relation:[
{sibling,p112},
{sibling,p113},
{parent,p001},],
},

Services & updates


middleware
communication hub
aggregation of health
information for patient
study recruitment and
participation management

Notification & authorization


authentication of all users
authorization for resource
access
establishment of peer-to-peer
networks

Recap
current siloed approach to storing HI
severely limited
Patient-centeredness needs to be
reflected in how we manage HI.
Proposed architecture
focuses HI management on patients (and
providers)
enables tailored preventive medicine
facilitates patient engagement in research

Thank you! Questions, comments?

Regenstrief Institute
@titusschleyer, @RCBMI
schleyer@regenstrief.org

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