Are consumers missing from the health IT picture?

Electronic Health Data Exchanges: Patient and Consumer Principles for System Design

A representative of the National Consumers League suggested Tuesday that consumers are being left out of the development of the health information environment.

Alison Rein, assistant director of food and health policy at the consumers league, criticized the national health information technology movement for lacking consumer participation. She described the national drive as an effort to sell consumers on the benefits of health IT but not an effort to engage them in its development.

“I’m not sure that the steps we’re taking at the national level” to give consumers more information and more choices “are really going to get us there,” Rein said during a panel discussion at a Washington, D.C., conference on personal health records.

For example, she said, the Department of Health and Human Services is spending large sums to foster development of regional health information organizations. But there are no grant requirements for including patients and other consumers in those organizations’ decision-making.

Likewise, she said, HHS’ Agency for Healthcare Research and Quality (AHRQ) has contracted for development of a national online resource center for health IT. But Rein said she knew of no plans for developing a Web portal for consumers. “If there’s not a centralized repository of information” for consumers, she said, it will be difficult for them to get up to speed on the issues and play an informed role in decisions about local health information exchanges.

After the session, Rein said other consumer organizations have similar concerns, and there have been discussions of a joint effort to win a larger voice for consumers.

Meanwhile, a group called the Personal Health Technology Council released a list of patient and consumer principles for health data exchange. The group was convened under the auspices of Connecting for Health, a project of the Markle Foundation and the Robert Wood Johnson Foundation. The two foundations and AHRQ also sponsored Tuesday’s conference on personal health records.

Consumers Union and the National Consumers League, along with the AARP, the AFL-CIO and other organizations, have officially endorsed the principles, which include giving individuals control over sharing of their health information and giving consumer representatives seats on independent boards to oversee regional health information organizations.