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A seat at the health IT table: Don't forget patients, advocates say

The Simple Minds’ ’80s hit song “Don’t You Forget About Me” could have been the theme for a recent hearing on disparities in health information technology.

Health information technology can bridge gaps and lead to safer care, but if professionals aren’t paying attention, health IT might also harm the very patients proponents want to help, advocates told members of the Health IT Policy Committee. The committee’s meaningful use workgroup hosted the June 4 hearing regarding disparities in health IT, and listened to testimony from organizations seeking to protect minority, elderly and other underserved populations.

Professionals discussed several issues and methods for including these patient populations in the use of IT, but what emerged is the belief that everyone needs a seat at the health IT table.

Providers and software developers frequently have discussed the need for doctors and other end users to be included in each step of the development process for electronic health records. It’s no different for the patients who supposedly are to benefit from health IT applications, those testifying at the hearing said.

Cynthia Solomon, president of personal health record developer FollowMe, said community engagement is a must for health IT development. PHRs are health advocacy tools, and reaching out to the people who have to understand their medical information is a way of building trust: “Consumers need to have a sense of ownership and control,” she said.

FollowMe, a company formed by Access Strategies, has developed two PHR products: MiVIA, which targets migrant and seasonal workers, and more recently, Health Shack, for homeless youths and teenagers in foster care systems. The key to ensuring that patients use the PHRs has been involving them in their development, Solomon said. For example, Health Shack includes a lot of audio and video applications. “These kids don’t read much, but they love video,” she said.

And what about elderly patients who aren’t as accustomed as others to using computers or the Internet for their health care, or patients who simply don’t have access? Policymakers need to ensure that these populations are being made aware of the benefits health IT has for their lives, according to Silas Buchanan, director of e-health initiatives for The Cave Institute. The Bethesda, Md.-based organization focuses on health policy and research aimed at eliminating racial disparities in care.

And health IT can help that mission if it’s rolled out in culturally appropriate ways, Buchanan told the policy committee members. There have been “missed opportunities to include underserved patients’ voices in innovation, development of HIT,” he said. “We want to be at the table, at the design stage.”

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From the blog: Don't forget to invite patients to the #healthIT planning table #ehealth
A seat at the health IT table: Don’t forget patients, advocates say
RT @HITExchange: A seat at the health IT table: Don’t forget patients, advocates say
RT @HITExchange: A seat at the health IT table: Don’t forget patients, advocates say
RT @HITExchange: A seat at the health IT table: Don’t forget patients, advocates say