Wednesday, June 1, 2011

Engaging Patients in Healthcare

“Although there are attempts to engage consumers and patients in their healthcare, it won’t really work unless organizations actively use health technology to find solutions to truly provide the healthcare needed today” remarked Neal Neuberger, Executive Director for the Institute for e-Health Policy at the May 24th event held on behalf of the “Capitol Hill Steering Committee on Telehealth and Healthcare Informatics.

An example of how effective consumer/patient involvement can best be described is by studying how the for-profit company PatientsLikeMe operates. The company was formed in 2004 by two brothers Benjamin and James Heywood and friend Jeff Cole because the three MIT engineers were trying to help Stephen Heywood afflicted with ALS. Unfortunately, Stephen passed away in 2006 but his story was the inspiration for the start of “PatientsLikeMe”. The goal is to help all patients better manage their medical conditions by becoming involved with other similar patients by using a health data-sharing platform.

James Heywood the Founder and Chairman of “PatientsLikeMe” came to the Capitol Hill briefing to discuss how the company operates and how the company helps both patients and consumers of healthcare deal actively with their own healthcare needs.

According to Heywood, patients that sign up to the “PatientsLikeMe” system are able to share in-depth experiences with others, learn about both old and new treatments, discuss symptoms, outcomes, find available research data, find information on prescription drugs, experimental drugs, and accomplish this by using the information on the web site to communicate with others that have similar medical and physical conditions.

Today, the typical EHR allows for transactional billing, records actions, information on clinical encounters however, the systems are physician and specialist centric. As Heywood explained, “What is really needed is a patient centric system that presents holistic representations on conditions and previous histories. The overall objective is to take patient ideas, verify what we already know, and then develop a new model that is truly transformative and helps the patient move forward.”

To further discuss the many efforts being made by his organization to engage the patient, Skip Hubbard Senior Vice President & CIO Bon Secours Health System & CHIME related how Bon Secours, a $3.2 billion not-for-profit Catholic Health System, is positioned to provide patients with tools that enable the patient to become truly engaged.

According to Hubbard, the Bon Secours system “ConnectCare” with more than 280 physicians live is more than an EMR, since it connects patients and providers across the continuum. Specifically, the system connections include “MyChart” with 13,500 patients, where patients have controlled access to the same medical information their providers use. In the future, “MyChart” is poised to play an important role to support the medical home and ACO model.

Hubbard further explained how their system “EpicCare” provides a link to paper-based and non- affiliated physicians however, these providers only have read only access to independent referring physicians. An independent EMR pilot is scheduled to begin in June.

He emphasized how important it is for patients to take an active role in their care but they need the means to do so. Bon Secours is actively rolling out new equipment to help in home care telehealth, welcomed physician robots in hospital settings, and using teleneurology in stroke centers especially in rural areas.

To further the discussion on engaging patients, Cynthia Throop, Health IT Research Analyst, RTI International, told the attendees that patient engagement is complex and is about more than just PHRs.

Currently, RTI is very actively involved in developing patient engagement tools such as:

• The “HealthBox Tool” uses interactive audio visual content to allow health workers to offer low literacy patients general health assessments, interactive education, rapid testing, algorithmic treatment, and triaged referrals

• “BreathEasy” is a personal health record application that builds on the latest clinical guidelines for treatment and self monitoring for individuals with asthma.

• “MyPreventive Care” is an interactive preventive health record to increase the delivery of recommended screening tests, immunizations, and counseling and enables patients to link directly to the health information contained in their primary care physicians’ electronic records.

To discuss how the federal government plays an important role to engage the patient and consumer, Lygeia Ricciardi, Senior Policy Advisor for Consumer e-Health in the HHS Office of the National Coordinator for HIT, presented ideas on how to effectively achieve consumer engagement.

She told the attendees that it is important to understand to what extent Americans are engaged in their health and healthcare. According to a review of 31 national surveys done by the Center for Advancing Health, it seems that one-third are consistently involved, while one-third are not, and one-third are inconsistent in their involvement.

HHS defines consumer engagement as actions that must be taken over time to obtain the greatest benefit from the healthcare services available. Ricciardi pointed out “Consumer engagement involves finding safe and decent healthcare, communicating with your doctors, organizing your healthcare, and most importantly being able to pay for your healthcare. However, to take it a step further, the patient plays an important role in making good treatment decisions, participating in those decisions, and being actively involved in preventive care.”

Overall, the Office of the National Coordinator is working on three strategic areas to provide access in terms of freeing up information, taking action when necessary to collect, organize, and use information effectively, and helping individuals become engaged participants in their own healthcare.

Ricciardi mentioned how the recent report “The Consumer Platform for Health IT” puts major thoughts together on the subject of consumer engagement. The report emphasizes the need for consumers and patients to work collaboratively as agents of change. They also need to develop and support recommendations related to health IT, but at the same time, engage in health policy making and governance at the federal, state, or local level. Consumer and patients must be informed decision-makers and able to verify the quality and accuracy contained in their own medical information.

For more information on the Capitol Hill Steering Committee Series, go to or email or