Stuart Powell and I attended an initial meeting with Lamiece Hassan and Paolo Fraccaro at the Health eReseach Centre (HeRC) in Manchester on Friday morning to discuss Paolo’s study into how best to present lab results to patients with Chronic Kidney Disease. Following a brief introductory chat Paolo gave a short presentation on the aims of the study which included an overview of the ideas he’d like to explore as well as references to existing systems such as Patient View (formerly Renal Patient View). He also shared a link to a TED Talk from Thomas Goetz which he described as influencing his work and objectives. I’ve included a link to the video below.
It’s time to redesign medical data
Stuart and I gave some feedback on how we use our blood results and which ones are important at the various stages of kidney disease, for example those results that are of prime interest to a patient on dialysis differ from those of a transplant patient. This led to the suggestion that utilising a Patient Profile method to collate and present results would be beneficial. We both felt that while Patient View in its latest incarnation was a massive improvement over the original system, especially the graphing facility, it still failed to present the results in an optimal manner. Stuart suggested that the introduction of colours to give visual clues to identify which results were in range, borderline or out-of-range allied to the inclusion of an overlay of ’normal ranges’ would help. Stuart also gave a short demonstration of how he uses his own spreadsheet models to monitor his own results and his utilisation of colour to highlight out-of-range results.
So what next? Paolo is to spend the next two months or so developing ideas based around our discussions and following a further meeting will implement a pilot study of 20 people. This pilot study will take place in the HeRC laboratories and will involve an analysis of the effectiveness of various forms of presentation of lab results. If you’re interested in taking part in the pilot study, and you will be compensated for your time, let me know and I’ll inform Paolo. Taking part would give you an opportunity to influence how lab results are presented to patients in the future as well as providing you with some idea of how easy it is to be involved in research that directly affects you.
I would like to be involved in this as anything that improves patients ability to help themselves can only be a good thing. As you say, patients use results differently dependant on what stage you are at. I.E. Being on Dialysis myself, I don’t really take much notice of my Creatinine results but for a Transplant patient, these are crucial, as the slightest movement either way can have an effect on some patients.
Thanks Brian, I’ll let Paolo know of your interest and I’ll be posting updates on the Facebook group when I hear from him. Could you email me at finnigr@gmail.com so I can pass on your email address to him?
This sounds like a good study to take part in at the university. Anything that enables patients to have their say in how results are fed back to them must be a great step forward. Lab results are hard to understand for a lot of people, and patients being given the opportunity to get involved in making them more meaningful will empower not only themselves but a lot of other patients too. I hope this is a great success for everyone.
As previously mentioned I am very interested Rob into Paolo’s research especially now that my results will not now be entered on Patient View2 because FGH Bury labs. are not on the system. I thought it would be to my advantage to go the wonderful Dr. Sinna’s Renal Clinic at Fairfield to save the ‘schlep’ to SRFTH, but that’s the downside _ no Patient View2 .
Hi Tony, I’ve passed your contact details on to Paolo and he’ll be in touch when he’s ready to start the pilot study. I’m really grateful that you want to take part.