WEBVTT Kind: captions Language: en-GB 00:00:13.150 --> 00:00:18.670 In one sense there is no doubt that Kidney Stone Disease has a huge impact, 00:00:18.670 --> 00:00:23.450 Not only on the health service but the individual. So over the last ten years, we've had a lot 00:00:23.450 --> 00:00:28.430 of national data come out. Saying that Kidney Stone incidence is increasing 00:00:28.430 --> 00:00:32.980 but the number of procedures That hospitals are doing is increasing exponentially. 00:00:32.980 --> 00:00:38.240 We also know that Kidney Stone related admission are increasing. 00:00:38.240 --> 00:00:42.620 With all that in mind, we have a very good idea of the direct consequence 00:00:42.620 --> 00:00:47.060 of Kidney Stone Disease to the health service. 00:00:50.040 --> 00:00:55.500 What we perhaps know less about is the indirect unseen impact. 00:00:55.540 --> 00:00:58.220 Bearing in mind that Kidney Stones can affect 00:00:58.230 --> 00:01:02.790 patients at any age but largely will affect younger people. These are people who have 00:01:02.790 --> 00:01:07.960 got families, who are working. Well what about the impact on the care giver, 00:01:07.960 --> 00:01:12.320 on the family? What about the time off work? What about the number of times they 00:01:12.320 --> 00:01:17.090 might be seen in hospital but we don't see them but they are going to their GP because 00:01:17.090 --> 00:01:22.330 they have ongoing pain. Sadly Kidney Stones often need multiple treatment. 00:01:22.330 --> 00:01:28.800 Well how do we know what the impact is when we don't see it. So that was the basis. 00:01:28.800 --> 00:01:33.900 How do we capture the indirect consequence of Kidney Stone Disease? 00:01:33.900 --> 00:01:37.950 That was the question. Well capturing it was difficult and there is not validated way of 00:01:37.950 --> 00:01:43.860 doing it. We have to make the patient the owner of telling 00:01:43.860 --> 00:01:48.310 us what had happened to them. Now there are some validated questionnaires 00:01:48.310 --> 00:01:50.920 that you can use to ask about the quality of life, so we 00:01:50.920 --> 00:01:58.820 used those. For those where there wasn't any obvious tool, we had to use a diary and put 00:01:58.820 --> 00:02:02.150 the onus on the patient to say look this is what happened 00:02:02.150 --> 00:02:04.650 to me, I was taking pain killers for three days, I was 00:02:04.650 --> 00:02:11.120 off work for two weeks. My partner has to take time off work. I had to go and see a GP 00:02:11.120 --> 00:02:14.510 on these days. Which we really can't get in a simple way. 00:02:14.510 --> 00:02:17.780 So the patient was given the onus in what we think 00:02:17.780 --> 00:02:23.440 was a helpful diary format, to be able to convey that information to us. 00:02:30.340 --> 00:02:36.439 Specifically to the study, there hasn't really been a study that has looked at this area 00:02:36.439 --> 00:02:41.689 in the UK. So I didn't have anything to go on. Secondly, 00:02:41.689 --> 00:02:46.180 how do I actually turn a research question that wants to 00:02:46.180 --> 00:02:51.100 look at what happens to patients away from hospital when there really isn't a validated way 00:02:51.100 --> 00:02:55.959 of picking that information up. So it was very much a stab in the dark. 00:02:55.959 --> 00:03:00.810 How do we collect that information? My other concerns were that I knew I was going 00:03:00.810 --> 00:03:06.430 to need people I wanted to work with. I had a clinical question but the research 00:03:06.430 --> 00:03:10.090 was going to look at various aspects: quality life impact, 00:03:10.090 --> 00:03:15.290 perhaps some economic data. Well I wasn't sure how I was going to go about getting those 00:03:15.290 --> 00:03:21.540 collaborators. So with all of these things in mind, I was ready to get some help. 00:03:26.400 --> 00:03:30.599 I think it would have been impossible really without early RDS support. The project 00:03:30.599 --> 00:03:34.811 when I spoke to them and the level of Patient Involvement it was going to need. An 00:03:34.811 --> 00:03:40.669 area I had not thought about is, having involvement from the patients and public early 00:03:40.669 --> 00:03:45.890 on in helping design the study. When I spoke to one of the advisers from the North West 00:03:45.890 --> 00:03:48.549 RDS, they told me that it would be very helpful and 00:03:48.549 --> 00:03:51.202 they also told me that there is a PPI, Public and Patient 00:03:51.202 --> 00:03:57.150 Involvement Fund as well, that I could access just to set up an initial meeting, a forum 00:03:57.150 --> 00:04:01.319 to try and get some patient involvement. Essentially, 00:04:01.319 --> 00:04:04.670 we invited a number of patients who have a vested 00:04:04.670 --> 00:04:08.879 interest. These were largely people who have suffered with Kidney Stones. 00:04:08.879 --> 00:04:14.939 We got them along to an evening with some sandwiches. Gave them an idea of the study, 00:04:14.939 --> 00:04:20.400 what we want to do and it was very helpful. Essentially, I needed to know from them, is 00:04:20.400 --> 00:04:22.550 this important. Do they think that this was worth 00:04:22.550 --> 00:04:24.650 answering and there was a unanimous agreement that 00:04:24.650 --> 00:04:30.520 it would be. There were areas where I wasn't sure how we can gather that information. 00:04:30.520 --> 00:04:37.669 We had put together a bespoke, homemade patient diary. Well in my head it worked but 00:04:37.669 --> 00:04:39.650 I needed to know from patients if they would 00:04:39.650 --> 00:04:42.110 be happy filling that in. So again getting some 00:04:42.110 --> 00:04:45.449 immediate feedback from the people who turned up there but we also gave them the chance 00:04:45.449 --> 00:04:49.680 to take it home, look at it over a period of time and write back to us and say look 00:04:49.680 --> 00:04:54.250 I think this works, this doesn't work. It was key and again one 00:04:54.250 --> 00:04:55.979 of the key messages that I have learnt is that is you 00:04:55.980 --> 00:05:01.240 are going to do something that involves patient, you have got to involve patients early in the design. 00:05:11.540 --> 00:05:15.040 The whole process of approaching and communicating 00:05:15.050 --> 00:05:19.760 with the Research Design Service was really very straight forward. I sent an email 00:05:19.770 --> 00:05:23.360 and I was asked to fill in a form. I remember it as being a 00:05:23.360 --> 00:05:28.470 very simple form. Basically there were some questions asked about my thoughts about the 00:05:28.470 --> 00:05:34.320 study and the areas I felt that I needed help with. I must say the areas that I 00:05:34.320 --> 00:05:38.260 thought I needed help with, I knew but I didn't know what I needed to know and I 00:05:38.260 --> 00:05:43.970 think the RDS was very helpful. I seem to remember within three or four days I had contact 00:05:43.970 --> 00:05:48.680 from my adviser and after that, mostly we had a number 00:05:48.680 --> 00:05:51.680 of email contacts but the adviser travelled down, 00:05:51.680 --> 00:05:55.750 physically, to see me on a couple of occasions. Even there was a drive down from Lancaster 00:05:55.750 --> 00:05:58.990 he didn't seem to mind. Really the contact was 00:05:58.990 --> 00:06:03.400 always very prompt. Always very specific, very willing to help. 00:06:13.000 --> 00:06:16.939 If you are considering developing your portfolio 00:06:16.939 --> 00:06:25.410 as a researcher or setting up a study then you begin with the North West RDS. Use them 00:06:25.410 --> 00:06:31.930 for as long as you feel the partnership is benefiting but I suspect they will probably 00:06:31.930 --> 00:06:37.620 be able to guide you through the whole process. In my mind they are your go to person, outside 00:06:37.620 --> 00:06:40.060 the Trust, as a first port of call.