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Mad as hell and aren't going to take it anymore

Consumer advocate cites growing patient backlash

Fueled by anger and frustration often linked to the death or injury of a loved one, a grass-roots consumer movement is arising nationally to demand more openness and accountability about hospital-acquired infections.

"There is a group of people all over this country that are really motivated to work on change," said Lisa McGiffert, director of the Consumers Union's campaign to "Stop Hospital Infections."

"They don't want to be pacified. They want to bring about real change in hospitals. They are very frustrated and some of them are really angry."

Known for its national publication, Consumer Reports, the union's campaign has included collecting stories from patients who were infected while receiving medical care. The group has collected some 1,200 patient stories and recently surveyed about 1,000 patients on hospital infection issues. The stories describe infections leading to repeated surgeries, rehospitalizations, job loss, and death.

"There is this sort of open-ended [feeling] that we don't know when they are ever going to get rid of this infection," McGiffert recently said in Tampa at the annual conference of the Association for Professionals in Infection Control and Epidemiology. "Everybody who talks to us says, 'I don't want this to happen to anyone else.' That is the single factor that gets people engaged in public policy. A lot of these people get very motivated. They want to do something in honor of a family member who died."

There is a prevailing sense that hospitals are not sensitive and responsive to the patient's plight. "Often people tell us that they tried to call attention to their problem," she said. "They felt like they knew what was going on with their body and nobody was listening to them. . . . You cannot stop a problem if you are not acknowledging that it exists to the people who are experiencing it. The most common thing here is not [just] recognizing the signs of infection and problems that might come about; but also when nobody pays attention to your pleas, there is a feeling of callousness."

More hospitals have become more proactive on hand hygiene issues, but patients report a lack of information on their infection or confusion about whether they or a loved one even have an infection.

"In our survey, 85% of them said they were not provided full information about the source of the problem," she said. "That is a staggering percentage when you think about. It is common for families to say, 'I watched my mother, my child, die a horrible, painful death, and no one would admit to me what was going on.'"

The consumer campaign is drawing national attention to the problem, letting the patients' voices be heard and urging consumers to take someone with them as an "advocate" when they are hospitalized. Though she did not cite specific incidents and provide documentation, McGiffert referred to accounts of blatant misrepresentation by hospitals discharging patients with methicillin-resistant Staphylococcus aureus (MRSA).

"One of the things that is most disturbing about this is that people are sent home from the hospital — the hospital knows that they have MRSA — but they are not told that's what they have," she said. "They take that home and infect their families. That is outrageous. They have no idea that they have something that is going to be passed on to their family. They might know that they have an infection but they haven't actually been told what it was and what they need to do to prevent the spread of it. So this is a really important public education issue."

Dedicated to safety, prevention

While infection control professionals are dedicated to patient safety and infection prevention, they have sometimes been at odds with the union's aggressive campaign and consumer activism. While citing them as key allies, McGiffert also took them to task.

"I really don't know how engaged you are in patient education," McGiffert told APIC attendees. "We couldn't remember a story where somebody said that the infection control professional at the hospital came and talked to me about this. I think you need to be more visible. That might be kind of scary if you're an ICP with too much on your plate, but there has got to be some way for people to know that you exist, and I am not sure that they do. Of course, that is going to require acknowledgement about what is going on with the patient — bringing them up to speed and answering some hard questions. I'm not sure that hospitals are there."

There is common ground. For example, the consumer campaign is pushing for "zero tolerance" of infections, a mindset that already has been endorsed and emphasized as a major APIC goal. "I am an advocate for zero tolerance," said McGiffert. "The mindset that these infections are inevitable — can't be stopped — is one of the fundamental problems for preventing these. You have to have a mindset that this can be stopped. There is so much that can be done to reduce infections, focusing on what can't be stopped is focusing on the wrong end of it."

The consumer campaign is certainly putting a spotlight on ICPs, but in doing so gives them a unique opportunity to prove their mettle. "You are the change agents," she said. "You are the people who bring about change within hospitals. It makes a difference what you do."