If somebody asks you: “What would you prefer: a.) a system that helps you and your family stay healthy and away
from hospitals; or b.) access to the best hospital with top notch technology,” what would you choose? From the
poorest farmer in a poor country, to the wealthiest professional in Western Europe, the first option would be
wildly more popular than the second. And yet, most countries in the world spend far more resources on trying to
bring ill people back to health than they do in trying to maintain and enhance their citizens’ health in the first
place.
Can we prevent illness or death? Most definitively not. But we can certainly look at the immense amount of data
already available to try to “engineer health” by testing, publishing, and promoting “best practices” for the
maintenance and enhancement of every individual’s health.
Once an individual falls ill, or a disease manifests itself, the best treatment plan is definitively a highly
personalized intervention. On the other hand, preventive health measures and those that promote health (such as
physical activity, living conditions, nutrition, etc.) can be generic and very broadly applied across large groups
of people. Those measures are highly predictive of health outcomes, and lend themselves to an engineering approach
on a large scale, population-wide.
..students of medical economics have long realized that what consumers demand when they purchase medical services
are not these services per se but rather better health.[01]
[01] Grossman M, “The Human Capital Model.” In Handbook of Health Economics. Volume 1A; Culyer, AJ; Newhouse, JP
(Eds.). North-Holland - Elsevier Science, B.V. (2000).
Frame: “Health” vs. “Healthcare”
Throughout this site there are references to both “health” and to “healthcare.” The difference is deep and broad:
"Healthcare” refers to the current paradigm of provider-based, sickness-centric services, centered on the
treatment and management of illness.
“Health” is defined by the World Health Organization as “a state of complete physical, mental and social
well-being and not merely the absence of disease or infirmity.”[02]
In the context of this site, “Health” is a broad term that may or not include a healthcare provider, and where
the main focus is the maintenance and promotion of an individual’s wellbeing.
Frame: “Fix” vs. “Maintain and Enhance”
The current healthcare paradigm is mostly focused on “fixing” the individual once she presents symptoms of an
illness or health condition. Truly, an "illness care" system.
Once a health condition has manifested itself, the available opportunities for cost-savings are very limited,
and the damage to the individual’s health is mostly done. This site advances the idea of patient-centric,
family-driven health maintenance and enhancement. This is about enhancing individuals’ and families’ health. And,
as a direct consequence, society’s health.
Jose C. Lacal developed the concept of Personalized Health Informatics ("PHI" thereafter) starting in 2004 as a
"Family-centered, portable, personalized, prevention-oriented Seamless Health Record platform of services to maintain,
enhance, and restore an individual’s health. Leveraging the growing power and sophistication of mobile computing and
communication devices and the expanding capabilities of wireless networks."
In early 2006 the IEEE-SA chartered a Study Group to ascertain if there were gaps in the current health IT
standards landscape where the IEEE could bring its resources to address. Given his interest in this topic, Jose C.
Lacal was asked to co-chair the study group together with Linda Weaver (Chief Technology Officer at Ontario,
Canada's Smart Systems for Health Agency).
A summary of Jose's proposal for person-centric, family-oriented Personalized Health Informatics standard is available here: http://grouper.ieee.org/groups/hit/Ottawa-29-30March/Lacal%20Proposal%20IEEE-SA%20Health%20IT%20Standards%20Study%20Group%20032006%20Scope%2002.ppt
In June 2006 Jose submitted a PAR (P2407 - Architecture and Framework Reference Model for Personalized Health informatics (PHI)) to NesCom, with Jose as the Working Group Chair.
On 28 July 2006 the IEEE-SA Standards Board approved the P2407 project until 31 December 2010. This is going to be IEEE's first ever standard in the health informatics space.
The purpose of this family of standards is '..to facilitate the development and usage of a comprehensive set of Internet-based tools that place the individual (and his/her dependents) at the center of an encompassing architecture of services that promote and enhance health. This standard is geared towards optimizing an individual's health, mostly outside of the scope of a healthcare provider. This standard is not about personal health records (that is being addressed already by many other organizations). This proposal is to create a "family health dashboard" where all relevant information (nutrition, environmental issues, published research, etc.) are brought together in an easy-to-use tool to enhance a family's health.'
- - - 03: P2407 Use Cases - - -
The proposed implementation for PHI standards is for a trusted third party (such as a bank, government agency, or private provider) to host a PHI-compliant system. The consumer will pay an annual fee to maintain an "account" with the PHI provider. Think of this as a "health records safe deposit box." Consumers today pay about US$100 / year to have a physical safe deposit box. PHI standards are designed to encourage the development of these services.
This is a more detailed use case:
01: Consumer opens a Personal Health Records account at a hosting service provider WebPHR (such as a financial institution).
-2: Consumer works with WebPHR staffer to scan Consumer's paper-based health records. (Alternatively, Consumer uses own scanner to load data into WebPHR's servers).
03: Consumer defines access rights: who, what, when can view/post/edit her PHR.
04: Providers are increasingly using industry standards (CCR, HL7) to exchange data amongst them.
05: Upon Consumer’s request, and approval, a Provider (physician, pharmacy, hospital, etc.) will upload data to, or query data from, the Consumer’s PHR using such named industry standards (CCR, HL7). Consumer is legally entitled to receive a copy of all data collected by each Provider.
06: Consumer will have complete control over her family’s health information, wherever she is.
07: Consumer will be able to take her PHR information from one hosting service provider to another. Therefore creating a Consumer-owned and -controlled longitudinal health record for her and her family members.
Please see http://grouper.ieee.org/groups/hit/files/IEEE_Study_Group_Health_IT_2.07.pdf
(page 36 and 37) for a banking analogy: anybody can send money into a bank account by knowing a few numbers (the bank's routing # and the individual's account #). What PHI standards also want to accomplish is to establish an equivalent "routing number" that allows a consumer to instruct the provider to "upload my encounter date to this account # at this provider." To be specific: the upload standard will be CCR or HL7's CDA; the data from medical devices to be uploaded to the hosting service will probably be IEEE1073; and for all other cases where existing standards are available we will use them.
Please see
http://grouper.ieee.org/groups/hit/files/Lacal_Proposal_IEEE-SA_Health_IT_Standards_Study_Group_032006_06.ppt (slides 22 and forward) for an example of how this system would look like to the consumer.
- - - 04: PHI and 1073 - - -
The proposed PHI standard (P2407) does not overlap with the 1073 WG and their standard work. P2407 has nothing to do with medical devices at all. P2407 acknowledges and will build on top of those existing standards (IEEE1073 included) and any new emerging ones (BT, ZigBee, Continua, etc.). P2407 assumes that devices are out there, using whatever standard is deemed appropriate by the vendors.
The Continua Health Alliance (an Intel-led consortium) is also working at the device-interoperability level. Disclosure: Motorola is a corporate member of Continua, and I attended several of the kick-off meetings of the group that became Continua.
There are no existing standards to enable a family to manage their health in a person-centric manner, as opposed to provider-driven. The focus of P2407 is to enable consumers to own their health, as opposed to the current paradigm of providers owning the consumer's health data.
