=Paper=
{{Paper
|id=Vol-219/paper-2
|storemode=property
|title=Personally Controlled Health Records: The US Landscape and the Indivo Project
|pdfUrl=https://ceur-ws.org/Vol-219/paper01.pdf
|volume=Vol-219
}}
==Personally Controlled Health Records: The US Landscape and the Indivo Project==
https://ceur-ws.org/Vol-219/paper01.pdf
Personally Controlled Health Records:
The US Landscape and the Indivo Project
William Crawford
Office of Policy, Centers for Medicare and Medicaid Services,i
200 Independence Avenue SW, Washington, DC 20021, USA
&
MIT Sloan School of Management, Harvard-MIT Division of Health Sciences & Technology,
and the Children’s Hospital Informatics Program
Introduction
This abstract accompanies a talk given at ISePHR on September 28, 2006. It does not
represent an official CMS Policy Statement or CMS endorsement of particular
research activities. It is instead intended to catalyze discussion of Personally
Controlled Health Records and their role in the future of health care delivery.
Personal Health Records in the US
Personally Controlled Health Records are an important component of the developing
public policy framework for an IT-enabled healthcare system. As the global health
agenda increasingly focuses on delivering higher quality care and shifts towards
episodic, rather than transactional, methods of assessing the effectiveness of clinical
interventions, the tools which place consumers in control of their own healthcare data
will become increasingly important.
The term “Personal Health Record” has been applied to a range of software products
and related services. While PHRs always contain a collection of basic healthcare data,
they range from isolated collections of pure data (which requires additional software
to interpret) to paper forms to sophisticated, web-based applications which also
incorporate clinical guidance, secure doctor-patient communications, and other
features beyond the natural scope of a “medical record.” Merely confirming a shared
definition will set the stage for substantial advances.
Applications and Requirements for PCHRs
Personally Controlled Health Records have a range of current and future applications.
In the very short term, PHR technology has been used by individual consumers to
track the details of their (or their dependent’s) medical histories. In the future other
applications will become increasingly important. These include recruitment for
clinical trials, management of patient registries for drugs, emergency care,
streamlining of school health record reporting, and other applications which have not
yet been envisioned.
Development of future PHR applications will be a collaborative effort between
patients, health care providers and software vendors. The establishment of standards
for interoperability, translation of data, provisioning of data, and certification of data
integrity will all contribute to the creation of “network effects” supporting further
adoption of PHR technologies and the development of PHR driven business models.
PHR Models
There are several widespread approaches to Personal Health Record software. Six
major PHR implementation models are described below. The PHR model which
requires the most user effort for data collection is listed first; each subsequent model
theoretically requires less effort by the patient to populate and maintain the record.
Paper: The simplest PHR model is a set of paper forms. In the most primitive model,
the PHR is a copy of the doctor’s paper record, carried by the patient. Several
organizations have developed designated paper PHR forms which collect data in a
more structured manner. The primary endpoint of these programs is to streamline
patient admissions.
PC Based: Several vendors provide desktop applications which allow users to record
their own health information. These applications are installed on the user’s computer
and rely primarily or entirely on self-reported information. The data can be printed
out for presentation to a physician. Some applications support exporting data into a
standard format called a Continuity of Care Record , but PC based PHRs are primarily
“health journaling” tools for individual consumers.
Portable: Most often based on a USB “keychain” storage device, a portable PHR
contains similar software to a PC based PHR, but resides on a portable storage device.
The PHR application can be run on any available computer, allowing data to be
viewed or updated at the site of care. The device itself is usually encrypted and
requires a password to access the patient’s data. Data must be extracted from the PHR
before it can be transmitted to a clinician’s office. For office visits, the data must still
be printed out ahead of time as there is no guarantee that the physician office will
have a computer available (or the time, or the security policies in place) to load the
portable record.
Internet (Web) Based: Similar to a PC based PHR, Internet based PHR companies
provide an application interface which allows users to enter their own health
information. Internet based PHRs offered by payors and purchasers (usually insurance
plans and employers) may also incorporate information from insurance claims and
Pharmacy Benefits Managers, reducing the patient’s data entry effort. The major
online physician-patient communication platforms (RelayHealth and Medem) both
include web based PHRs as key components.
Internet Portal: Also known as a “tethered” PHR. Many hospitals and clinics have
rolled out patient portals attached to their internal EHR system. Users can log in and
are given a view into the data stored within the hospital’s clinical information
systems. The portal based “PHR” is not, by the definitions above, a Personal Health
Record at all, since the data is not owned by the patient unless it is exported. This
PHR model requires minimal effort from the patient, but is limited in its ability to
integrate data from different providers. We include portal-based PHRs in this
document because many vendors have chosen to identify their portal offerings as
PHRs.
Health Bank: The “Health Bank” model aggregates data from multiple providers
(insurance companies, hospitals, PBMs, labs, and the patient) in a centralized, patient-
controlled data repository. The health bank is responsible for making the record (or
components of the record) available to authorized users, and for giving the patient a
mechanism to identify who may access what parts of their record, and under what
circumstances. As standards develop, the health bank may or may not provide a direct
user interface for manipulating the PHR data. Instead, the health bank provides the
data in a standard form via a standard interface to third party software which presents
the information in a user-appropriate manner (to a physician via an EHR, to a patient
with translations of clinical terms, etc.)
The Indivo Personal Health Records Platform
At Children’s Hospital, Boston, our research group has developed Indivo, a research
platform designed to enable the development of personally controlled health record
systems. The Principal Investigators of the Indivo system are Dr. Kenneth W. Mandl
and Dr. Isaac Kohane of Children’s Hospital Boston and HST. William Simons is the
lead software architect, and many others have contributed to the system’s
development.
Indivo is a distributed, web-based, personally controlled electronic medical record
system that is ubiquitously accessible to the nomadic user, built to public standards,
and distributed under an open-source license. The Indivo system is essentially an
inversion of the current approach to medical records, in that the record resides with
the patients and the patients grant permissions to institutions, clinicians, researchers,
and other users of medical information.
• Electronic medical record systems should be designed so that they can
exchange all their stored data according to public standards
• Giving patients control over permissions to view their record (as well as
creation, collation, annotation, modification, dissemination, use, and deletion
of the record) is key to ensuring patients' access to their own medical
information while protecting their privacy
• Many existing electronic medical record systems fragment medical records
by adopting incompatible means of acquiring, processing, storing, and
communicating data
• Record systems should be able to accept data (historical, radiological,
laboratory, etc) from multiple sources including physician's offices, hospital
computer systems, laboratories, and patients' personal computers
• Consumers are managing bank accounts, investments, and purchases on line,
and many turn to the web for gathering information about medical
conditions; they will expect this level of control to be extended to online
medical portfolios
The technical architecture of the system is still evolving; one version was described
in a 2005 JAMIA paper.ii
i
ii
J Am Med Inform Assoc. 2005;12:47–54. DOI 10.1197/jamia.M1592.