Listening to patients: how the All.Can patient survey was created
With more than 30 years’ experience of running surveys in the healthcare sector, Quality Health was a natural choice to partner with All.Can to run the first-ever patient survey on identifying inefficiency in cancer care. Ahead of All.Can’s session at this year’s European Health Forum Gastein – where he will present preliminary findings from the survey – Daniel Ratchford explains how his organisation developed the questionnaire to ensure we obtain crucial information about patients’ perspectives on waste and inefficiency, and how cancer care could be improved.
It’s been really exciting for Quality Health to work on the All.Can patient survey over the last year. We’ve previously been asked to run many cancer patient experience surveys in many countries – but rarely on this scale, and never asking directly about waste and inefficiency.
But where to start? All.Can had already gathered literature on waste and inefficiency, and we went on to carry out an even more in-depth literature review. Certainly, a fair amount has been written – but virtually all of it from the clinical, academic and policymaker perspective. As far as we could see, no one had ever asked patients themselves for their view – so that’s exactly what we did.
Before starting to develop a questionnaire, we ran a series of face-to-face interviews with cancer patients and cancer survivors to listen to their stories. Where had they seen inefficiencies during their care, treatment and recovery? What did they think could be improved?
Many of the results were a surprise. Our respondents didn’t talk much about cancer treatment itself, nor about drugs, chemotherapy or radiotherapy. There were much bigger issues for all of them. They had all experienced delays in diagnosis, in various parts of the system. There were financial costs around travel, additional support or the impact on their employment. There were ongoing side effects from treatment. And then there were lots of stories about the need for – and lack of – psychological support, both for cancer patients themselves and their families.
These are the issues that we focused on in the questionnaire. We developed specific questions on these topics, tested them with patients, and translated them into the appropriate languages for the countries where the survey is running.
The survey is still open in most countries, but we’ve had the benefit of seeing some of the interim results already. Some fascinating data are emerging, with many consistent themes across different countries and diverse healthcare systems. We can’t wait to run the final analyses and develop some robust patient-based evidence on this topic for the first time.