Consumer Voice - Foundational Principal of Health and Health IT

(The following is an attempt to answer the question I was asked recently of "WHY should ONC include consumer engagement in their programs when it isn't specifically called for in the funding legislation. I believe the patient consumer voice is a "core value" not a "program or an aspect of a program" and that the success or failure of Health IT should be judged based on whether or not the consumer is at the center of all of the tools we use. In fact the "informed/empowered consumers needs to be a core strategic outcome" of all of the billions that is about to be invested by our Government into Health IT.

At its core health care starts with a conversations that happens between providers and consumers and their family members and health IT simply allows that "conversation" to take place in new locations, via new medium and in asynochornous ways. It is the one task that will always happen and in order to have a patient centered healthcare system consumers need to be involved in every step of this process - It is a draft and I hope that my health IT friends help me refine the concept)

Ever since the Institute of Medicine’s 2001 report, Crossing the Quality Chasm: A New Health System for the 21st Century, we have been working towards a patient-centered care health care system that among other things: “establishes a partnership among practitioners, patients, and their families, to ensure, that patients have the information, communication, education and support they need to make decisions and participate in their own care"

The Institute of Healthcare Improvement also identified the “critical importance of information sharing and decision-making” as one of the four core concepts of patient-centered care.“ You need to include “patients on health care improvement and design teams” so that they “have the tools and support they need” to be empowered, educated, informed consumers and “effectively participate in their care and decision making. ”

There is strong support for this patient-centered model in Section 3001 of the HITECH portion of ARRA.:;">The National Coordinator is to develop a “nationwide health information technology infrastructure that allows for the electronic use and exchange of information that”-- ‘(2) improves health care quality, reduces medical errors, reduces health disparities, and advances the delivery of patient-centered medical care; ‘(5) ensures the inclusion of meaningful public input in such development of such infrastructure;‘(6) improves the coordination of care and information.

In an ideal “patient-centered system we would design our systems around patients and their care communities” rather than around clinicians, doctor offices and centered on the needs of the system itself. One system with the highest EMR adoption rates in the US, (50% of 540,000) accomplished this by using a collaborative model of consumer engagement at each stage of design, implementation, adoption and optimization. Patients were actually able to “write” to their chart via email and this helped pull the providers forward through the adoption stage.

The resulting “Shared Care” EHR model (vs a fragmented EMR/PHR) prioritized consumer needs (convenience, access to information). In some family practices for example up to 50% of all encounters are done remotely via technology, with clear cost savings and improved patient satisfaction scores.

When patients are fully informed of their treatment options, they generally select the least invasive or costly one-to improve patient understanding of their health care options, to reduce the rate of procedural interventions, and most importantly to increase patient satisfaction with their care provided and confidence in the decisions they make." States Explore Shared Decision Making, Kuehn, JAMA.2009; 301: 2539-2541.

Consumers aren’t waiting for EMR’s or “Health IT. ” They are already using information technology to research health care concerns and find support in increasing numbers. Pew Research /California HealthCare Foundation In order to end up with a patient centered health care system you must engage all of the stakeholders voices especially consumers>at each point in the process.