Is your hospital providing the best CF care inAustralia? What should you and your healthcare team be doing to improve the quality of care? These questions matter. Over the last 50 years it has been largely improvements in quality of care that have led to a six-fold increase in life expectancy for people with CF. We need to be learning from the practices and policies of the best centres. But how do we know who to study if we don’t know who they are?

In December 2004 an American surgeon named Atul Gawande made one of the now most well-known arguments about the importance of clinical care. Gawande wrote an article called ‘The Bell Curve: What happens when patients find out how good their doctors really are?’ The piece was published in The New Yorker. You can read it at www.gawande.com/articles. It’s fascinating and essential for anyone wanting a better future for people with CF.

The Bell Curve makes three fundamental points: First, the quality of CF clinical care has a direct and considerable impact on the length and quality of life of patients. Second, and perhaps surprisingly, centres differ significantly in their outcomes. Patients at the best centres were living 14 years longer than at the worst centres. Third, following on from that, one of the best ways to assure excellence in care is to give patients and families the information they need to assess that care. Shortly after The Bell Curve was published, the American Cystic Fibrosis Foundation (CFF) decided to disclose to CF centres in theUS which among them were achieving the best outcomes (as measured by life expectancy, average FEV1, nutrition, etc.). Until then no-one knew which hospitals were helping their patients to live the longest or stay the healthiest.

To quote from the CFF’s website (www.cff.org): ‘The reporting of care center data is part of the CF Foundation’s quality improvement (QI) initiative designed to speed up the rate of improvement in care throughout the cystic fibrosis care center network.’ The CFF believes open disclosure of care centre data will lead to faster advances in quality as healthcare professionals and patients can identify what works and what doesn’t. Disclosure is meant to encourage positive changes, not punish underachievers.

We do not yet have open disclosure of CF centre data in Australia. Thus, although Cystic Fibrosis Australia has been collecting centre-specific data for many years, they have not chosen to release that information to patients and families. Many healthcare professionals support disclosure, knowing it will speed up improvements—and improvement is what everyone most wants. There will always be some fear associated with such a step. And of course, raw numbers are not the only measure in CF care. There are many factors not adequately gauged by the care centre data. For instance, some centres have a majority of patients living close by with easy access while others have a high proportion living hours or even days away. Patients and families will need to consider these issues to fully understand the implications of the figures.

However, if CF care is truly a partnership then both partners must be informed—to be able to make decisions, to change their own behaviour, to contribute the most they can to improving outcomes and quality of life. The time has come for Australian CF patients and families to be fully informed partners in their own care.  CF Australia should make public key indicators on the performance of CF centres in Australia.