Biggar View – Winter 2014

It’s winter and that means only one thing to many Victorians: footy. Even after more than a decade living in Australia, I’m still amazed by the hunger and commitment shown by the masses of footyaholics. They roam our cold streets in winter; sit through three hours of glacial rain, overpriced steaming meat pies and chaos in the G’s Bay 13 to watch their beloved team play. These fans don’t just watch, of course, they participate. They know how this game should be played, coached and umpired—it’s their game. They dress the part, study the game, watch the TV analysis and read the day-after commentary. Aussie Rules fans know what it means to participate.

I’m beginning to wonder if those of us living with cystic fibrosis who aren’t crazed fans could learn a thing or two about participation from our footy-mad friends.

There is evidence now that patients and their families who participate in their own care are safer in the hospital as a result. For a number of years studies have indicated that patients and their families who are actively involved in their treatment and have good self-management skills have better outcomes. To anyone who has lived with a complex chronic condition, this makes sense. Highly involved patients are better able to manage medications, to adhere to treatment plans, to spot and report new symptoms and they may also have greater confidence to follow up concerns. Conditions like diabetes and asthma have often been a focus of this kind of research, but it has been shown to be true in CF.

But the evidence goes further than that and it’s important for those of us who live with CF. A 2011 study, for example, found that hospitalised patients who reported a high level of involvement in their care were less likely to have an adverse event. Specifically, the study looked at factors such as (a) whether the patient found it easy to find a doctor or nurse to answer questions; (b) whether the doctor or nurse described the pros and cons of treatment options; and (c) whether the patient was involved in making treatments decisions as much (or more) than they wanted.

The study consistently showed that being involved in ways like these meant you were less likely to suffer what is referred to in healthcare as an ‘adverse event’. An ‘adverse event’ is an unwanted and usually harmful outcome; it could be related to medication, surgery or other treatment. In this study, the patients who were more involved in their care were only half as likely as the others to have at least one adverse event during the admission.

For people who spend time in hospital, this stuff matters. It’s not a question of going to a ‘good hospital’ or a ‘bad hospital’ because, unfortunately, adverse events happen at all hospitals. Despite the most sophisticated quality and safety systems and double-checking, people are human and mistakes happen. The authors of the above study suggest that the patients who were more involved generally watched, noticed and flagged potential problems before they became dangerous. It is not only our right to speak up, but also our responsibility. The best, safest health care happens in teams, particularly teams that include the patient and their family.

As we patients and families, ever so gently and politely, consistently assert our role as team-members, health care will become safer for everyone

Weingart, et al. Hospitalized patients’ participation and its impact on quality of care and patient safety. International Journal for Quality in Health Care 2011; Volume 23, Number 3: pp. 269 –277