The CDC started working with patient advocates 3½ years ago. At that time, bloggers and others, many of whom didn't recognize that the CDC doesn't function as a regulatory agency, Tumpey said, were criticizing the organization for its response to public health concerns such as the H1N1 virus.
“To be honest, we were getting beat up” by consumer advocates, Tumpey said. So the CDC worked with Consumers Union to identify people who blogged frequently about the organization and set up conference calls with these identified patient advocates.
The calls “initially were very painful,” she said. But they “have really completely changed our relationship” with some of the organization's critics, Tumpey added. Now, the patient advocates receive reports from the CDC in advance of the reports' publication and have the opportunity to talk with the reports' authors.
At a local level, hospitals should look to engage patients who are outside the organization but within their community, hosting an initial face-to-face meeting with patients, followed by monthly conference calls and possibly quarterly in-person visits to discuss hospital safety and quality initiatives and other patient-care efforts. Providers also should know when state and federal agencies are set to release healthcare quality data and should have information from their organization ready for release simultaneously. “Tell the story from your perspective” using a combination of data and non-technical text, Tumpey urged.
A policy of transparency and accountability and a reputation as an organization that acts on patients' concerns can go a long way if patients need to be notified of a recently identified infection risk, she said. Patient advocates can help a healthcare organization pinpoint the general public's most pressing questions and concerns, which allows the organization to tailor its public messages, she said. It's a myth that telling the public about a risk is more likely to cause undue alarm, Tumpey said. Rather, giving an honest assessment of scientific risk in a situation decreases the potential for alarm, as it gives people the chance to express their concerns and have them addressed. “Involve consumers in the process,” Tumpey said. “Learn from audiences and shape messages for them with their input. … Engaging consumers is critical.”
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