Patient Engagement in Health IT Efforts Could Be Crucial

by Kate Ackerman, iHealthBeat Senior Editor

At the Health 2.0 conference earlier this month in Washington, D.C., several patient advocates stressed the need to include patients in federal health IT efforts.

Trisha Torrey, who writes the Every Patient's Advocate Blog, noted that many of the policy terms thrown around by the health IT community, like "HITECH" and "meaningful use," are meaningless to patients.

A day later, a survey -- conducted by Harris Interactive for the Xerox Corporation -- was released, finding that only 16% of U.S. adults with a health care provider or institution said they have been approached by that provider or institution to discuss converting to electronic health records. The survey also found that respondents ranked patients as last among groups to benefit from EHRs, with 26% reporting that patients have the least to gain from EHR adoption.

Many experts have said that patients could be crucial in drumming up demand for health IT and helping to encourage doctors to make the leap toward EHR adoption. But what if patients don't yet understand the benefits of health IT?

HHS last month announced plans to conduct a survey of 840 primary care practice patients and a 20-patient focus group to collect information on patients' perceptions of EHRs. The research aims to help policymakers better understand how health providers' use of EHRs affects patient satisfaction, care coordination and doctor-patient communication.

Such information could prove invaluable in helping the federal government to tailor its health IT education and communication efforts to consumers, but is it too late in this stage of the game to try to get patients on the health IT bandwagon?

Consumers' Perceptions of Health IT

Findings from surveys on patients' perceptions of health IT have varied over the years.  

A survey released by the Deloitte Center for Health Solutions at the Healthcare Information and Management Systems Society's annual conference in 2009 found that 42% of consumers surveyed favor increasing funding and incentives to support EHR adoption among doctors, hospitals and health plans. Meanwhile, a 2008 Commonwealth Fund survey conducted by Harris Interactive found that nearly 90% of respondents said they want their physicians to be able to share information electronically, while 71% said they want their physicians to be able to order prescriptions electronically.

However, a 2009 report from the Agency for Healthcare Research and Quality found that consumers lack sufficient knowledge about how health IT tools will affect their quality of care. Researchers noted that health IT does not appear to be an important issue for many consumers "because they do not perceive a strong connection between health IT and health care quality." The researchers also found that many focus group members had significant concerns about whether electronic health systems would compromise the privacy and security of their medical records.

Carol Diamond -- managing director of the Markle Foundation's Health Program -- said, "Our research has shown that Americans perceive that there will be benefits to improved sharing of electronic information by providers. When the public is asked about health IT, most respond by saying it can be helpful in improving the quality and efficiency of care."

However, Diamond noted, "We and other researchers have also found that health information technology is not a top-of-mind issue for most consumers. We've found that a lot of consumers simply haven't encountered or used health IT. They have a perception of high value when asked, but it's mostly not based on direct experience."

When asked what she expects HHS' research on patients' perceptions of health IT to find, Diamond said, "We would not expect to find a high level of awareness among the general population -- or even among the majority of doctors and other health care providers -- about the detailed meaningful use criteria that will be used to determine which providers and hospitals will be eligible for Recovery Act subsidies for using health IT in ways that improve care."

Consumer Input in Federal Health IT Efforts

"Consumer and patient input is a critical factor in the success of this [federal health IT] effort and actively seeking [it] will be an ongoing requirement for achieving the objectives of the investments in health IT," Diamond said.

Many of the federal health IT advisory committees and work groups include consumer representatives from organizations, such as Consumers Union, the National Partnership for Women and Families and the Center for Democracy and Technology. Furthermore, consumer groups have been quite vocal in their push for consumer-focused health IT policies.

In April, more than 50 consumer and employer groups sent an open letter urging federal health officials to maintain the proposed definition for meaningful use of electronic health records in the federal government's final rule. The letter states, "A final rule that does not lay a clear path in the first year toward tangible improvements in quality and lay the foundation for the systemic changes necessary for reform could waste taxpayer dollars and not launch us on the needed course for the future."

However, Diamond said, "Some of the most powerful insights come from individual patients who have experienced firsthand, or in the process of caring for a loved one, the consequences of a lack of information sharing in health care," adding, "Their input is crucial to make certain that the priorities stay focused on the things that will improve health and health care for individuals and their families."

Diamond said, "Some individual consumers have offered very powerful testimony to these committees already, but it's critical that [the] government continue to seek this input in additional ways including by actively educating the public about the Recovery Act investments and soliciting further input through a variety of channels all the way through this process."

Future Patient Engagement

HHS has awarded a two-year, $26 million contract to public relations firm Ketchum to create a publicity campaign to educate consumers, patients and health care providers about health IT adoption and health information exchange. The federal stimulus package's HITECH Act called for public education efforts to help encourage the adoption and meaningful use of EHRs.

Diamond said giving patients the ability to obtain electronic copies of their personal health information will be key to showing consumers the value of health IT. She said, "When people have that in their hands or at their fingertips online, that's when they start to see the benefits; every patient knows what it's like to move between doctors and not have their information available and what it's like to fill out the same forms over and over again from memory at each provider's office."

"I have no doubt that consumer participation and demand will become an essential part of unlocking the potential for health information tools and services to achieve the important goals for meaningful use," Diamond said.

Nick Lloyd
What an interesting and compelling post. Yet ultimately, when healthcare organizations consider the steps needed to improve the patient experience, they face a business decision. Here’s an interesting and compelling article by Cleveland Clinic Chief Experience Officer Dr. James Merlino that lays out the business case for the patient experience. It’s called “The Patient Experience: Why Top Hospitals Should Care.”
Denise Silber
In 2003, the European Commission hired me to write "The Case for eHealth". The target audience was European policymakers. I nonetheless concluded with the recommendation that significant communication to the consumer at large about eHealth would be an indispensable success factor...It did not happen, but it remains clear that if voters were demanding that their providers be computerized, we would be a lot further along in health IT. Let's launch a worldwide contest for the best way to get the message out.
William Oravecz
Kate, you are right-on! Just like the AHRQ has been sponsoring television ads teaching Americans that they need to take hold of their healthcare and ask their doctor questions about their health, they should start requesting their complete health record in electronic form from their healthcare providers.
Sharon Feder
Good for you, Trisha Torrey, for keeping the focus where it belongs in order to be functional in reality. I did find it interesting that at the end of the article, the comment is made that positive gains would be made by patients having electronic copies of their actual EMR. We've found those neither very efficient for timely review of complicated histories, nor very viewer-friendly (for either medical professionals or patients). However, if there were a Summary of the EMR that the patient could have and use as a virtual medical advocate when engaging with their health professionals and making medical decisions -- well, everyone would be happy. Seriously.
Barbara Duck
It's too bad everyone keeps missing the mark here with consumer involvement with healthcare. It's mobile now and needs that type of interaction and on my blog I have a campaign with using cell phones to find FDA recalls, perfect, a bit of a gimmick and very useful and almost easier than making a call with a phone. This would about do it and bring many levels together at once, benefit consumer, doctors, hospitals, FDA, drug enforcement, etc. all at once. Just need minds living outside of tech denial to recognize this:)

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