I want to introduce a term: “serial referral delays.”

I assert that serial referral delays are harm, and they’re a metric we can track at any level from individual hospital to the entire nation or planet. First, a little discussion, then “how can we start?”:

At Boston’s Beth Israel Deaconess, Paul Levy is working diligently on instituting process changes that are already proven in industry to minimize errors and improve efficiency. This morning he notes that in the UK, surgeon Ara Darzi has responsibility for reforming their health system, where costs have tripled in 11 years. (Chase the links there.)

Perhaps because Lord Darzi has no government experience, he’s starting from the most fundamental questions, such as “Is the job getting done at all?”

“It is all obvious stuff, but we have never done it this way,” admits Darzi. He says that the problem is that “if you look at a journey of a patient, it’s fragmented. How do you integrate that care?” He cites the example of a patient with kidney pain who is referred by a GP to a consultant and then sent for an X-ray on a different day, then back to the consultant for an initial assessment. “If you are shopping in Tesco you wouldn’t do that. You need to have access to competency at the time you need it.”

Hooray for that!

I rarely hear senior management talking about the anxiety caused by these delays, but patients sure do. And that’s not to mention the actual harm that can be caused by a condition progressing while waiting for care: harm.

Managers like Paul are at work on reducing the delays, but there are a lot of mountains to be moved. Meanwhile, you and I are hung out to dry, unable to get care until the system gets around to it.

Here’s the thing: serial referral delays are a fundamental problem that arises in the model where healthcare is only accomplished by institutions whose time is scarce. In the participatory model, patients don’t wait. Engaged with their peer communities, they can discuss symptoms, organize support, take steps, and even go somewhere else when they know they need something that their current provider can’t deliver.

You can tell empowered, participatory patients because we don’t sit around being victims, we do something about it.

• First, we recognize “What’s going on here?? My care’s being delayed!”
• We say so, out loud, particularly looking for a feedback point at the care facility where we can say “This is not working. Unacceptable.”
• We mobilize ourselves and get support everywhere we can. We educate ourselves about our condition, including finding the latest news, particularly in peer communities such as ACOR (for cancer patients).
• When we deem it necessary, we simply go elsewhere when we can. Last fall a friend was told she needed a scan, but couldn’t get one for three weeks. She went elsewhere. Good thing she did, too – the scan revealed unexpected metastases, which were caught earlier.

No kidding – referral delays are harm, especially serial delays.

So now, medicos, how do we start? What data exists that we could mine to establish the current state of things, and do you think we can track it easily going forward?