Anne Lyddiatt wears many hats in her volunteer efforts but the priority remains the same — getting out the message for patient safety across Canada.
After her many long years and varied roles in the battle to improve patient safety in Canada, Anne Lyddiatt still somehow retains enough energy to sweat the details.
Even minor problems can get her back up. She was waiting for a ride inside a back entrance of a sprawling hospital in Sherbrooke, Quebec, recently when she spotted some striking patient safety posters mounted on a nearby wall.
Good, right? Wrong. The place where Lyddiatt was standing was neither a public entrance nor a high-traffic area for medical staff.
"But there were those posters on a wall back in the corner, out of view, nowhere where visitors or patients and staff would normally be going," Lyddiatt says. "I felt like taking them down and walking them over to the other side of the hospital."
The Ontario member of Patients for Patient Safety Canada became one of this country's first patient safety champions 10 years ago but her work for the cause stretches considerably farther, steeped in her background with VON Canada and as a longtime nurse educator. A diagnosis of inflammatory arthritis forced her to leave the nursing work force many years ago but once her disease was under control, Lyddiatt threw herself into volunteer activity and she's never slowed down since.
For the past 20 years she's been the national trainer for the Patient Partners in Arthritis Program. She regularly offers the patient perspective in Strategy for Patient Oriented Research master classes, sponsored by the ON SPOR SUPPORT unit through the Canadian Institutes of Health Research. And she's just completed a three-year term on the board of the Cochrane Collaboration, which has been producing systematic reviews of primary research in human health care and health policy for the past 20 years. Lyddiatt continues to chair that organization's consumer group, where her dedication to the patient perspective remains undiminished.
"It's one of those things you just keep working away at," Lyddiatt says of her patient advocacy. "If it's something that can help get out the message for patient safety, as far as I'm concerned if you're able to do it and have the time, then you just jump in and do it."
Looking back, Lyddiatt says she can't point to a single dramatic safety incident that first drew her attention.
"It was a series of small things that really shouldn't happen. Medication errors and things like that. To me it was, okay, this is an accident waiting to happen," she says.
"By the time I got into patient safety and heard some of the stories I realized I was a little behind the times because some of those drastic things had already happened. So that made me even more convinced that this was really necessary, something that really needed feedback. Obviously we needed input from health providers but you also needed to have it patient driven as well."
That conviction was only strengthened by a deeply troubling personal experience with the health care system a few years back. Lyddiatt's adult daughter, Jeri-Joann, suffered a series of adverse events in a number of health care facilities, including two debilitating bouts of C. difficile diarrhea, prior to her death in 2011. The lack of empathy and understanding that Lyddiatt and her daughter encountered at times over that period confirmed for her how crucial it is to have that perspective, whether you call them patients or clients or consumers, at the forefront of any health care strategy.
"I think when you are navigating the health care system, whether it's for yourself or a family member or whomever, you need to be really clear and know what your goals are and what you want and need. You need to not be afraid to express that. And sometimes that will be different from the provider's goals and what they are aiming for but you need to somehow work out a system where you and the providers can work together."
Lyddiatt says she generally keeps her nursing background under wraps on those frequent occasions when she finds herself on a site visit within a health care setting. She prefers to just stand back and observe.
"If that sounds like spying on staff it's not because I realize they're fighting against obstacles too," Lyddiatt says.
"Nursing has changed, there's a lot more paperwork, there are so many things that are different. But I still think that there's the element of safety in patient care that sometimes gets lost in the shuffle. There's a lack of listening to a patient and the family. Either it's 'we don't have time" or "you don't understand what we're doing,' which isn't always the case.
"We know this happens in hospitals all the time. But I really am concerned and alarmed by what happens in nursing home and long term care facilities because many of those patients don't have a voice. They don't have a voice personally and many of them don't have someone to speak up for them. You know the horror stories that go on in some of these, and I'm not saying they're all bad because that's not the case, but I do think that's an area of patient safety that we haven't really tackled and we need to look at."
For all the strides that have been made in patient engagement and patient safety, bringing change to medicine and health care "is really difficult and it's always slow," Lyddiatt says.
"Why, I have no idea. But the standard response you get whenever you want to try something new is, well, we've always done it that way. And the other is well that's the way I was trained and it was good enough for me, so therefore it's good enough for the next guy," she says.
"I can understand it, if you've been doing something for 20 or 30 years and it's always worked for you why would you want to change? But by the same token, the world has changed. I really fault the med schools. I think they do the best they can but I don't think they've changed as quickly as they could to keep up with the times."
Lyddiatt takes the same measured view when assessing the general legacy of patient advocacy in Canada. One development she'd like to see is a greater emphasis on patient solutions rather than patient stories about adverse events.
"I think we've come a long, long way since we first started. We've got a lot more patients involved and I they're a lot more engaged than they were originally. I don't think there's a shortage of volunteers anymore," Lyddiatt says, checking off the pluses.
"The one thing we have to do is look at the issues that we regard as real patient safety problems and not only tell our stories but also come up with realistic solutions about how we can prevent this in the future."