10 PERSPECTIVE 2020 At first patients came into the clinic to be signed up, shown what to do and given the kits, but now with COVID that isn’t happening. My colleague, IBD co-ordinator, Gillian is signing the patients up on the IBDoc portal and sending the links and step by step instructions to the patient. She then packages up the kits in a padded envelope and sends them out by first class post to the patients. Initially there is a reasonable amount of work in signing up the patients for the first time, but once they are established we just need to send them a new kit each time they need a test. Easy To Use The feedback from the patients has been excellent. They found the kits very easy to use and they really like the fact that they get to see the results and that they don’t have to wait weeks for them to come through. It gives the patients a better understanding of how their disease is doing so they can see if their inflammatory markers are high or under control. This provides real peace of mind which is important. From our perspective the big benefit is how quickly we get the results back and can start to make decisions on treatment options for the patients. Patients don’t have to keeping phoning to find out if the results are available (two weeks is a long time if they are worried they are flaring). If a patient thinks something is wrong they can request a kit and easily find out if they are flaring or not, and they don’t have to come into the hospital. Even the older patients have coped really well and have embraced the new technology – the oldest patient we have on the IBDoc is 75 year old! If anything, it is some of the younger generation – the late teens that don’t seem to do quite so well. From a technology point of view this is surprising, but these patients are transitioning from paediatric to adult care, and so maybe previously their parents have dealt with things, whereas with the IBDoc it is their responsibility. If you are thinking of introducing the IBDoc into your hospital, think how it fits in with your service, and speak to your patients to see if they are willing to embrace the new technology, because a lot probably depends on your patient demographics.“ Kezia Allen, Clinical Trials and Informatics, Pathology We have always worked closely with our IBD team and this has enabled us to ensure that our assays provide them with the results they need when they need them. We had begun some work looking at IBDoc last year and the IBD team were keen for the clinical laboratory team to be involved in this. The IBD team arranged for some patients to attend a workshop hosted at the hospital where representatives from Alpha Labs along with the IBD team and myself from the lab discussed the IBDoc with the patients. Following a demonstration of the device I took the patients to try it for themselves. This was really interesting as it gave me a chance to see how the patients got on using the devices, observe any difficulties and be there to offer advice if needed. The patients found the App and the devices very easy to use and had very few questions (apart from ‘how soon can we have these as part of our standard care!’). For myself from a lab point of view (we often feel a bit of disconnect between laboratory testing and how the results are utilised in the wider healthcare setting) it was so interesting to hear how keen these patients were to be able to better manage their condition themselves at home. Following a successful pilot and with the pandemic ongoing, it became clear that getting the IBDoc devices in use would be key to help keep these IBD patients well and out of hospital during this difficult time. NEQAS Scheme We enrolled in the NEQAS faecal markers of inflammation scheme as the first user in the IBDoc group. We have been very pleased with the performance and hope that other users will enrol in the scheme as they begin using the devices for their patients. We will continue to work with the IBD team to refine the service and our use of the IBDoc portal. Vicky Munday Ulcerative Colitis Patient Vicky took part in the original IBDoc trial at Basildon. “I have done a couple of tests now with the IBDoc and I think it is brilliant, because it is just so quick. It is so much better than sending the sample to the lab because the result comes through straight away, and this time it was low so that is really reassuring. Gaining Control When you have a long term condition like IBD you put your whole treatment plan in the hands of other people, but something like IBDoc means that we can be involved and are helping. When you first get a flare up the clinical team need the results from the inflammatory markers before deciding what to do and previously this was taking too long. When you have IBD the two week wait for results seems like two months, but with the IBDoc you get the result straight away which then speeds up the treatment which can only be a good thing. The Patients’ Viewpoint I think it is brilliant.
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