Helen West, Public Patient Involvement & Engagement Officer at Guts UK, joins Sam to talk about the charities’ joint project, a diverticular disease priority setting partnership. Helen and Sam explain what a priority setting partnership is, what we’ve done so far, what’s going to happen, how you can get involved, and why we’re looking into diverticular disease. Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas. Their mission is to provide expert information, raise public awareness, and fund life-changing and life-saving research into digestive diseases.
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Transcript
Sam
Welcome to Can I Butt In, the Bowel Research UK podcast where we welcome bowel cancer and bowel disease, patients, researchers, healthcare professionals and carers to butt in and share their experiences. We’re picking a topic every episode and getting to the bottom of it. I’m your host, Sam Alexandra Rose. I’m the Patient and Public Involvement Manager at Bowel Research UK, and as a patient myself, I’m excited to bring more patient and researcher voices into the spotlight.
Welcome to today’s podcast episode, which is all about an exciting project Bowel Research UK is involved with in partnership with Guts UK. Charity friends! And here with me today is my friend Helen West, Public Patient involvement and Engagement Officer at Guts UK. Guts UK is the only UK charity funding research into the digestive system from top to tail, so that’s the gut, liver and pancreas. Their mission is to provide expert information, raise public awareness and fund life changing and life-saving research into digestive diseases. So today we’re going to be telling you all about the diverticular disease priority setting partnership. We’ll explain what a priority setting partnership is, what we’ve done so far, what’s going to happen in the future, how you can get involved and most importantly, why we’re looking into diverticular disease. Because both of us can talk about this subject standing on our heads and it might be quite amusing for you listeners to pretend that that is exactly what we’re doing. Because we know all of the answers to all of these questions already, we’re gonna tackle it like a sort of FAQ. And so I will pose a question and we will answer together. But first, hi, Helen. Welcome to the podcast.
Helen
Thank you. Thank you so much for the invite, Sam. It’s fantastic and it’s absolutely brilliant that we’re working in collaboration as two charities together and. So important. And so I’m delighted to be here. Thank you.
Sam
Absolutely. So let’s just start with the nice basic question, we have: What is diverticular disease? Before we get into what is a PSP and all of that sort of stuff because there’s a lot of different words associated with diverticular disease. So we’ve got diverticulitis, diverticulosis, we’ve got diverticular disease. And I get the impression that patients may have been told that they have any one of those, and it may be a good idea for us to just outline what each of them are because, yeah, just to sort of show how they’re all sort of associated with each other.
Helen
You are so right, and there are so many diverticulum something and it is incredibly confusing. And when people get a diagnosis they often get extremely worried and understandably, because it is a word, the words sound quite concerning, but often they’re not concerning at all. So we’ll start with diverticulum, so that is where the diverticular, which is a small pouch about one centimetre in size. It actually sticks out of the wall of the large bowel, so that’s kind of what the diverticulum means. And then diverticula is often, it refers to more than one diverticulum, so often people are only diagnosed with one, and if it’s diverticula, it means that they’re diagnosed with more than one. Diverticulitis is when it becomes several diverticulum and they get inflamed and infected. It all sounds very confusing, I know, but that’s kind of the language that is used. And then diverticulosis is a term, which means that it is not diverticular disease. It means that there’s a presence of diverticular, and often people don’t even, are not even aware that they’ve got it, and the only time that they’re aware that they’ve got it is if they’ve undergone something like a colonoscopy or a sigmoidoscopy or something like that. So it’s often detected and they’ve never had any condition or problems with that at all. So that’s kind of the breakdown of the language, really more than anything else.
Sam
Couldn’t have said it better myself. So yeah, you have this kind of umbrella of diverticular disease and then – nearly knocked my microphone over – all these different things that kind of fit underneath it. We’re professional here!
Helen
Absolutely!
Sam
So yes, so we’ll, we’ll talk about the protocol and all of the documents that we’ve made for the, the PSP a bit later, but it just reminded me as well that it was really important for us to when we were starting to write up the documentation for the PSP to outline all of this so that people understand. So that people aren’t confused like. Well, I have diverticulitis. I don’t have diverticulosis. I don’t know what diverticulosis is. So yeah, it’s really good to kind of outline all of that. So our second FAQ is how common is diverticulitis or diverticular disease, and who is affected?
Helen
Yeah. So it is a very common condition. They’re generally saying that anybody that’s over the sort of the age of 40, 45, it will be one in three people that suffer from diverticulitis or diverticulosis or one of those. We are, one of the, which we will go on to later, but as you know Sam, more and more, we know from the people that we’re speaking to and people involved in our PSP are getting younger and younger. Yeah. And, you know, one of, again, we’ll go into this in a moment. But, you know, one of the reasons that we’re doing this priority setting partnership is because we, you know, we don’t know why people get diverticulitis, or diverticular disease and we’re now seeing younger and younger people and we’ve got no idea why that is. So it is really important for us to identify that, definitely.
Sam
Yeah, yeah, really important that this research sort of addresses that. Yeah. As you, as you say, because around half the people of, population of Western countries over 50 have diverticular in their colon, which rises to 70% by the age of 80. But as you say, we can’t discount the number of young people who are also affected because as that number of younger people affected rises, then we need an even more an increase of understanding and treatment and care for all of these different people. And I also have a statistic here that says that 160,775 people were admitted into hospital with diverticulitis in England in 2020. So that gives you an idea of the scale of it as well. It’s something that people might not have necessarily heard of if they don’t have it or know somebody who has it. But yeah, more common than people might think.
Helen
100% yeah, yeah. And it’s getting more and more common. And some of that is we obviously don’t know, hence why we’re doing the research. But also you know, our diagnosis is getting better as well where we’ve got a better understanding. So I think more and more people are getting diagnosed with it quicker as well now and I think that’s making a difference.
Sam
Yeah. And I guess as well with these incidental findings of diverticulosis as well, it may be that somebody has a different condition or symptoms related to another bowel condition and then they happen to find diverticulosis on the colonoscopy as well. And it’s good that that can be identified too.
Helen
Definitely, yeah, 100%.
Sam
So my next question I’ve got is what are the symptoms? So I’ll rattle off the ones that I have in front of me and you can let me know if I’ve missed any, but we have intermittent abdominal pain in the left lower quadrant, and we should put a little asterisk here, shouldn’t we, because that’s most of the time in, in the left lower quadrant, isn’t it? But some people also experience pain on the right hand side.
Helen
Correct.
Sam
A little bit more unusually.
Helen
Yeah. And normally the right hand side, it’s been identified as generally within the Asian community. That’s not always the case, but that’s where the majority of it is. So yes.
Sam
Yeah. And we also have constipation, diarrhoea, national large rectal bleeds, tenderness in the belly either left or right, as we’ve just said and potentially bowel incontinence as well. And I have a statistic here that says it can lead to complications for up to 15 to 25 percent of people and those complications can be diverticulitis, so that’s kind of having the symptoms from it; obstruction; perforation; bleeding; abscess; and fistula. So yeah, it can be minor or it can be much more severe.
Helen
Fortunately, in most cases it is minor. But as you quite rightly said with your statistics sort of around 20 to 25% of people have more severe complications, but yes, and the other kind of area of diverticulitis, is that a lot of people get really high temperatures and they get very nauseous as well, so. That’s kind of another area as well.
Sam
So we’re starting to form a picture here. We’re kind of seeing that there’s a few different factors and different like people can get pain in different areas. People can, as you say, mostly have mild symptoms, but it can in some cases be more serious. Older people can get it, but also younger people can get it. The pain can be on the left side or in the Asian community it might be on the right side. There’s lots of different angles to this, isn’t there? And it just kind of shows you the importance of looking at it from every angle.
Helen
Correct. And the other area that you have to look at as well as that you know your stools, so you need to make sure that your stools or your poo isn’t showing any signs of mucus or blood, anything like that. And it can be for any condition, any bowel condition, but particularly that’s a big sign as well. So if you’ve got mucus or blood in your stools and your poo. It’s really important to have that checked out for sure, yeah.
Sam
And we often say as well, looking for anything that isn’t normal for you because we all have our different – one person might just go like once a day in the morning, one person might go more frequently during the day and that’s normal for you, but it’s if something becomes like ohh I haven’t. I haven’t gone in a couple of days. That’s not normal for me or I’ve been going frequently for a prolonged amount of time. That’s not normal for me. And just sort of knowing your own body, isn’t it? For all bowel conditions.
Helen
It’s so important and you know as much as there is a stigma, a big stigma, often about people looking at their stools or looking at their poo. It tells us so, so much and as you rightly said Sam, you know, we need to make sure that people are checking that and everybody goes well that’s but. It is so important because if it does, if you do have those changes and you don’t see anybody about it, it can really escalate and cause major problems in the future. So you’re better to have the slight embarrassment now of going to see somebody if there is a change, then holding out and then when it is really severe.
Sam
Yeah, better not to suffer in silence. Absolutely.
Helen
Yeah, definitely. Absolutely. And on the Guts UK website, we have what we call our Pootorial and that’s really informative and that’s a little interactive in a nice way that you know you can press on sort of the colour or whatever and then it can kind of show you, yeah, if it’s like that for X amount of time, that’s fine. But if it continues like this, then you need to go and see somebody about it. And it gives you an explanation, because sometimes you know we look at something like bit horrified or it may be slight change. But it could just be something that you’ve. It could be something very simplistic or something that you need to look at. So yeah, definitely worth having a look at the Pootorial.
Sam
I I didn’t know about that and I love the title of that, Pootorial.
Helen
Pootorial! Yeah. Yeah. On. Yeah, it is definitely on our on our website and it’s really good. Yeah, absolutely.
Sam
That’s a good point as well about thinking about what you’ve eaten, because as long-time listeners will know I have an internal pouch. So that means that things can go through me quite quickly, and sometimes they come out in a similar way that they went in. So I might see something in the toilet and think, oh gosh, is that blood? And it’s a red pepper or something.
Helen
Beetroot’s the other one, isn’t it? Often so be a little bit aware of that, that if you eat beetroot, sometimes that you’re that that can come through looking like well, gosh, is that blood or something? Just think a little bit before getting stressed. Oh my gosh, you know that? Ohh yeah actually you know I had a beetroot salad or something, you know 12 hours ago or 24 hours ago.
Sam
That’s it.
Helen
So yeah, but that would be the only one that I would say you gotta be a little bit careful. Yeah, but yeah, it’s amazing what it can tell you.
Sam
Brilliant. Yeah. OK. Our next question then is, so why does diverticular disease require more research?
Helen
That’s a very good question. Well, the really short answer of that is, is we don’t actually know why or we’re uncertain of the causes of diverticular and why it develops. That is the absolute short answer to that. You know, we have a little offshoots of why we have a little bit of an understanding why, but we don’t have full answers. And that’s why this priority setting partnership is so important. So yeah.
Sam
And considering how many people it affects, as we’ve outlined, there actually hasn’t been that much research that’s been done into it yet. So. So yeah, as you say, there’s lots of unknowns about how it develops. Also, why? Why is it starting to affect people at a younger age and what are the treatments, what are the best treatments for it? How can people best manage it? So what we really need to do is to, yeah, identify what all of these unanswered questions are in this area, which will this priority setting partnership is hoping to… I’ve forgotten the word.
Helen
To achieve?
[Laughter]
Sam
Yes! To achieve. I was gonna edit that, but I might just leave it in. Teamwork.
Helen
Absolutely. And I think there’s lots of ifs and butts around this diverticular disease. You know, people have. It’s down to, you know, a lot of people have considered it’s been down to lifestyle. You know, is it? Is it genetic? There are some answers, but they’re very, very limited. The other great thing about the priority setting partnership is that it will also identify the areas that may be questions that people are asking that actually we have them. We do have that information about it. So that kind of the unknown knowns, if you know and we can answer those as well. So that’s going to be very interesting. As well of what gets produced from that as well.
Sam
Yeah, that that would be really good. No question will be wasted and we’ll go in a minute into exactly what the process is, but yeah, will be really useful to see. Well, this has actually been answered, but people don’t know what the answer is. So maybe there’s more work that we need to do there in terms of public engagement and teaching people more about the disease. Next question then why are BR UK and Guts partnering on this?
Helen
Because we’re two amazing charities.
Sam
Absolutely.
Helen
Simple question, simple answer. Absolutely. I think it’s absolutely vital. I mean, we both come with our specialist areas we both come with very passionate community that need and want answers as well and I just, you know it, it just makes absolute sense that we collaborate together as two charities that are very passionate about research and our communities, our patients, our carers and getting factual evidence based information and you know, heading in the right direction of research for sure.
Sam
Yeah. And I think it’s a great team because obviously by the name Bowel Research UK focuses more on the research and not so much on patient support and that sort of thing, which is really where Guts UK particularly shines, isn’t it? I know you have lots of experience with knowing like how patients feel about illnesses like diverticular and what’s important to them and what they, where they have issues.
Helen
Yeah. And also we’re an evidence based charities that all our information is Piff ticked with the NHS. So we make sure that all our evidence, all our patient information is evidence based. And one of our biggest leaflets that we get asked for is on diverticular disease. Out of all the other 40 odd leaflets on different conditions that we have, that is the highest one that we get asked for regularly all the time.
Sam
Oh interesting.
Helen
Yeah. So that also shows how important it is to all our communities. You know that are looking for more further information. Yeah, yeah.
Sam
Yeah. And there’s no other charities that are focusing on diverticular disease, and there hasn’t been a PSP that’s been undertaken for this condition before. I mean, as we’ve already sort of said, it’s an underfunded and under researched condition. And yeah, we have that good mix of research and patients. Patient support. So let’s get into the meat of what is a priority setting partnership as I have some. Well, I have a couple of points where I mentioned the JLA, so I think that the first thing to say is that while Guts UK and Bowel Research UK are jointly collaborating on this as equal partners, we’re doing it with the James Lind Alliance and I don’t know if you want to say a bit more about what the JLA is Helen? Cause you’ve had quite a bit of experience with them now because this is not your first rodeo. This is not your first PSP.
Helen
It’s not. It isn’t at all. Umm, I’ve been in the fortunate position to be involved with the James Land Alliance for the last three years. And we have completed two previous priority setting partnerships, one in pancreatitis and one in irritable bowel syndrome, IBS. So yeah, no, you’re right, Sam. This is definitely not my first outing as far as the James Land Alliance is concerned. So it just shows you how passionate we are as a charity in our involvement with the James Lind Alliance because we know that their methodology and everything behind doing a James Lind Alliance priority setting partnership, how great it is and how successful it is as well. So to give you a little bit of an idea about who James Lind Alliance is. They are a non-profit making organisation that is funded and sits under the NIHR. So the National Institute of Health Research. So they kind of sit under there. They’ve completed well over 150 priority setting partnerships already. So they’re seriously got credibility behind them and the reason that they came about was to ensure those that fund health research are aware of what matters to patients, carers and clinicians who need to use the research in everyday life. So that’s kind of how they came about to make sure that the patients, carers and clinicians all are on the same page when it comes to researching about varying different conditions. And one of the greatest things about the James Lind Alliance is that their processes are completely transparent. So. Everything, as you well know, Sam, that we do is completely transparent and the information is available once the process has been completed, very inclusive and it is of equal voice between the patient carer and the clinician, the clinician, the healthcare professional. It’s. So it’s equal voice. No one is coming together on the priority setting partnership higher or lower than anybody else, it is 100% equal. They exclude certain organisations that are particularly may have commercial interests, so they do exclude pharmaceutical companies, companies that, or organisations that maybe could make profit out of research questions. That’s kind of. We kind of want to put that in there because I think that’s really important for people to know. So that’s the principles behind the JLA initially yeah, and it’s about identifying the evidence and uncertainties of, you know, questions that have been asked and the research. Does that bring it together a little bit of what that’s all about?
Sam
Yes. Yeah, yeah, that’s really. Yeah, that’s really good. So the outcome of a PSP just to sort of segue into the next question then is to have these 10 priorities that we will end with that have been decided by patients and healthcare professionals. And carers and families as well. So we’ll go into the process of and what the steps are for the PSP. But eventually where we want to end up is we have these 10 priorities of research questions that healthcare professionals, patients, carers, families have all come up with together. Everybody’s had their say about it so that researchers can come along, they can think well. I want to do some research into diverticular disease. What should I be looking at? They’ll have these 10 questions that we’ve put together for them. And those 10 questions will be things that are really important to patients and to healthcare professionals like, these are the things that it would be really great to focus on and could make a real difference to people’s lives. The outcome is a tool that helps researchers to best focus their efforts on things that are really, really going to help people in the future.
Helen
Yeah, exactly. That’s exactly right.
Sam
So should we talk through the process of the PSP and where we started and then how we’re going to get to those 10 priorities cause it’s a long project, isn’t it? It’s gonna be about 12 to 18 months, yeah. Depending. Yeah, depending how quickly we can sort of get it all together. But there’s very specific steps that we need to follow in order to get there.
Helen
Yeah, absolutely. And as you know, Sam. I talk about this a lot, a lot, and probably to the point where you probably just want to shout at me now. But I do talk about the fact that this process is completely transparent and I’ve already said it and I’m going to say it again and I’ll probably end up saying it again because it is really vital that everybody knows that, that it is a transparent process and at no point is there, all the availability and all the information that goes into this PSP is available at the, as I said at the end of it. So to kind of start off the transparency right from the very beginning is that we do what we call a matrix of our steering group. So we bring together a steering group that covers patients, carers and healthcare professionals from all four parts, Four Nations of the United Kingdom, and that can with their healthcare professionals that can. We bring on healthcare professionals that have anything to do with diverticular so that we have a dietician, we have a consultant, we have a surgeon, we have a psychiatrist. So all aspects of the healthcare professional side of it. And then from there we bring on patient and carers and that they cover from the four areas so diverticular disease, you know from diverticulosis. So they cover the different aspects of diverticular disease. And then from there we also make sure that we have a range of gender, ethnicity, age. So we cover the whole sort of spectrum. So that’s how we kind of start our first process as you well know Sam, it’s we get our steering group together which consists of 16 people and that’s equal, that’s eight healthcare professionals and eight patient carers so that brings our steering group together and then from there the main priority for the steering group initially is to get the protocol. What is important on the protocol. So what are we going to cover when it comes to this? So are we going to cover the management of patients and care information do we cover condition. What do we actually cover in the protocol? So from there, Sam, shall I hand that back to you and you can go into more detail on that?
Sam
Yeah. So, so yeah, we put the protocol together and as with anything we have these regular steering group meetings where everybody agrees on all of the documents, anything that me and Helen and the JLA did together all gets taken back to the steering group and we take comments and we get approval and things like that and the protocol sets out the scope of the PSP. So what are we covering? What are we excluding? For example, it’s only looking at diverticular disease in the large bowel rather than elsewhere in the digestive tract. It’s again, as, as I said earlier, is where we define all of our terms and what we mean by diverticular disease. And so all of that sort of stuff is laid out in the protocol and our aims and who’s on the steering group and that sort of thing. And then where we are at right now, just to dilute the podcast magic just a little bit, because where we are, where while we’re recording this episode is not where we will be when the episode is released, but we’re currently putting a first draft of the first survey together, which we will take back to the steering group and we will get their comments on it before we can release the first survey and the first survey has some kind of basic demographic questions and things like that, but. Essentially, there’s one main question to the first survey, and that is simply, to paraphrase, what do you think we should be researching and diverticular disease? What’s important to you? What questions do you think need to be answered so that is the question for the first survey. So yeah. As we’re talking now, that will be out by the time this this episode is released, it will be there and we’ll put it in the show notes, a link where you, if you’ve been affected by diverticular disease, if you’re a carer or a family member or a healthcare professional, please do go to the survey and tell us. Because this is where we are now in our process. What is important to you in terms of diverticular disease?
Helen
And it’s this is a really important part and you know, you hear that, Sam, I’m sure we’ve heard this so many times throughout and there is no question as a silly question and I love. I love that phrase and that’s absolutely 100% when it comes to this survey, no question is a silly question and I definitely know that from previous PSPs because I’ve heard people say ohh somebody else would have asked that question because it’s so basic and the basic questions, anything from a basic question to a complicated question is a great question. And part of the process is we have a fantastic information specialist and she makes sure that all the questions are put under very different headings and that kind of thing. So every question is a great question and the previous PSPs that I’ve worked on, some of the questions that have been asked the most times over get into our top 10. And then we’ve had a situation where one question was asked and that’s got into the top 10, so. Think every question is an important question for sure. Yeah. And also if you do ask a question that you think ohh maybe there’s already an answer to that, I won’t ask that. Please, please ask it because then we know that if you’re asking that question you may not know the answer to it. So that and there might be research to it or there might not. We’ve previously, we’ve come across a situation where healthcare professionals have gone. Oh, no, no, no. We’ve definitely all you know that, that’s common knowledge. That’s common knowledge. But when we’ve looked into the research of it, actually it’s not common knowledge at all. There’s been no research done to it. Or we’ve had a situation where people have said, oh, I’m there’s been research done on that or you know, nobody’s ever researched that. And then we find out that there’s actually huge amounts of research done on it. So. So it can flip from research being done or not being done. So please ask. Any question related to diverticular because it’s really important that we get that information. For sure.
Sam
The only thing we can’t answer is your very specific questions about your personal condition, because we should say that this survey is completely anonymous.
Helen
Yeah, correct. Yeah. Yes.
Sam
So your questions firstly can’t be tracked back to you, so you don’t have to worry about being embarrassed or anything that, nobody will know who’s asked what the question, but that also means that we can’t reply to your questions and we can’t answer the things that are really specific to your particular experiences.
Helen
Yeah, that’s so correct, Sam. The only thing that we do have is at the end of the survey, you’ll have your opportunity to put your name and e-mail address, so if you’d like to have updates from us about what’s happening on the PSP and also an invite to our next survey, which we’ll explain a little bit in a moment, but you can definitely leave those details. But as Sam you quite rightly said, unfortunately we can’t answer individual queries at all.
Sam
Yeah. So we get all of these questions that come back from the survey and then the data will be analysed. So if multiple people have asked the same question, then they’ll be grouped together. If we think that something has already been answered in previous literature, then that will be put to the side. As we say, it’s not discarded. You know, it’s still important to know what people don’t know that has been answered so that we can direct you to information that already exists. That’s still good to know. So we go through this data analysis process and then do you wanna talk us through because I’m involved in another PSP but we’re at a similar stage, we’re only a couple of weeks in front, so. So then we put out a second survey, don’t we? After we’ve collated all of this data and that asks people to choose, then from the listed questions that we’ve already gathered, what is important to them?
Helen
That’s absolutely correct. So we will then put out a second survey and that will have around about the between 50 and 60 questions on that survey. And at that point you can then list the questions, the top, out of that list, the top ten basically of the most important questions that are on that list to let us know what those are. Once that survey is closed, then we again, we analyse all that information and then we then take that to what we call a final workshop. Now the final workshop consists of approximately 15 healthcare professionals and 15 patients and carers, and you will come together and it’s generally an in person meeting, all the other meetings up until this point have been online. And then we, on again, on equal, we go into four different groups and then at that point you start discussing the final questions and that’s normally around about 30 questions that go to final workshop and out of those, each group will say well actually after lots of discussion and patients and carers talking about their lived experience and what they’re most important would be, the healthcare professionals talking about what they feel would be the most important. Again, it’s all equal footing. Everybody’s coming together on with equal voice and then at that point you sort of start discussing it and then and then there is a methodology behind it. And then by the end of the day, we will have a confirmed an inclusive top 10 of what the questions will be. So they will be the researchers’ top 10 priorities for diverticular disease. That’s kind of the end process saying that we’ve got the top 10, the generally whatever questions are taken to the workshop will always sit on our website, so it will always sit on Bowel Research UK’s website, Guts UK website and the James Land Alliance website. Again, they’re all public knowledge, but all the questions will sit there. The whole, you know, whatever we take to final workshop will sit there, but it’s the top ten that are the most important.
Sam
Yeah, that would be a great feeling, I imagine, when we finally gets to that point, when we get the top ten, that would be a great achievement.
Helen
Absolutely. What I will say Sam though is that often it’s a fantastic achievement and it’s kind of like we made it, but as the James Lind Alliance said to me, right from the very beginning of the very first PSP that I undertook, which was in pancreatitis. My fantastic, the facilitator actually who that we have for our diverticular our lovely Maryrose. She said to me, Helen, the PSP is just the beginning. And I’m like, what do you mean by that? So what I would like to make clear and I think I’ve said this to you haven’t I, Sam. When the PSP finishes, this is actually just the beginning.
Sam
Yeah.
Helen
Of the process because there is a process, but it’s just the beginning, so you know it doesn’t stop at the final workshop. That’s really just the beginning. And so we then start making sure that, you know, researchers hear about this study. We make sure it goes in all the journals we make sure that it’s disseminated. Wherever we can possibly disseminate it and start bringing in researchers to start doing the research, because there’s no point us doing all of this and asking people their questions if we’re not actually going to now do something with it. So this is just the beginning. I mean, this is just where we begin.
Sam
And it’s such a huge project really, isn’t it? When you think about because one of the questions on my list is who is involved in the PSP. And of course we’ve got written down the James Lind Alliance. So she’s saying Maryrose and me and you Helen, of course. And then our steering group of 16 people, one of which is also our clinical lead. And then we have, I think you said 15 healthcare professionals and 15 patients at the final workshop. Yeah, and. And you will notice that 30 is a larger number than the 16 on the steering group. So not necessarily everybody who’s on the steering group will be in the final workshop, but you need more people than that. So that a lot of people involved that way. And then obviously all of the people who are going to be submitting their questions of which we hope there’s going to be.
Helen
Right.
Sam
Lots and lots, and then all of the researchers who are going to come afterwards and do research based on the top 10 as well.
Helen
And also from our charities’ point of view as well, we will be presenting at varying different conferences. We will also very much be disseminating this out onto our social media platforms because we’ll also be talking, you know, we’ve talked a lot about, no question is a silly question. You know, there’ll be questions the known unknowns, known, you know, unknowns knowns, that kind of thing and we will be, you know, making sure that that gets published. We will also be producing a final report which will be in lay language so anybody can understand it and. Also. Speaking to people about why these questions were so important to them, why did they? Why did they make that one of the top 10 questions from a healthcare professional point of view, as well as a lay person, because often the answers are very, very different. And I know that from previous experience that often a healthcare professional says that definitely has to be in the top 10. And the patient and carer will say, yeah, that definitely needs to be in the top ten. But this is all for very, very different. And we make that very clear in our final report, which I kind of want to make it clear that this isn’t just for the researchers, this is also for the patient and carer and families and everybody that’s affected by diverticular disease, yeah.
Sam
Yeah, we’ll definitely be sharing it far and wide. And I think it’d be really interesting as well to hear about why people have chosen the questions that they chose. And yeah, what the meanings are behind that and what the experiences are behind that and seeing some kind of case studies and things like that, yeah, that would be really interesting.
Helen
Yeah, everybody has a different story, a different lived experience or been involved with somebody that’s had a lived experience, you know. Yeah. So it’s very important that we get that voice out there.
Sam
I have one final question which I ask all of my guests, which is what one takeaway would you like to end with? I think our message is clear, isn’t it? Do the survey please.
Helen
Definitely please do the survey. Absolutely. And also you know the greatness of doing the survey is that we can also keep you updated because often we hear about this amazing research or these great surveys that come out and we all fill them in and we never hear anything. Now I know you’re not gonna hear anything initially immediately, but certainly within 6 to 12 months you’re definitely here updates and that kind of thing. So yeah, it’s really important. Yeah. Please fill in the survey.
Sam
I’ll put the link to the survey in the show notes so that everybody can click on it has access to it. So yeah, if you’re a patient who’s been affected by diverticular disease or a carer or friend or family or a healthcare professional, and you want to have your say on what’s important to you about diverticular, what should we be researching? What should the priorities be, what would make your life better? Fill in the survey and yeah, sign up for updates and we’ll keep you updated and watch this space.
Helen
Thank you. Thank you so much Sam for organising this today. It’s been absolutely brilliant, a great experience.
Sam
Ohh, thank you. Thank you for coming on.
Helen
A little out of my comfort zone.
Sam
No worries. It’s been. It’s been brilliant. So yeah, everybody do the survey. Do it right now while you’re thinking about it and we’ll sign off and have a great day. And thank you very much.
Helen
Thank you. Thank you so much.
Sam
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