Patient Engagement: The Physician's Perspective
Updated: Sep 10, 2020
In this episode of If Medicines Could Talk I talk with Mark Samaan, a Consultant Gastroenterologist in London's Guy's and St Thomas' Hospital.
Mark talks about his working closely with the patient advocacy group Crohn's and Colitis UK and his involvement in their ongoing research and patient engagement. We discuss the importance of group capacity in patient engagement initiatives offering great diversity in cultural, social and health literacy levels.
Mark also remarks on the newly termed phrase of patient integration, what this means and how surgeons are becoming more implicated in successful patient engagement initiatives.
We also touch on digital communication and how this is transforming how patients and doctors interact over priority setting.
There are separate episodes combined into one video, each one is time coded.
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Watch the full interview above or read the transcript below.
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Patient Engagement: The Physician's Perspective
NH: Well today for the new episode of If Medicines Could Talk, I'm delighted to be able to introduce Mark Samaan who is a Consultant Gastroenterologist in London's Guy’s and St Thomas’ Hospital, and he's going to be talking about his experiences with patient engagement. Mark, welcome.
MS: Thanks, Nick. Thanks so much for having me.
NH: I'm really thrilled because this is the first physician who we've interviewed for If Medicines Could Talk and I'm really looking forward to getting the physician’s perspective on patient engagement. First of all though, could you give me a little perspective about what you do in terms of engagement?
MS: Right. Okay. So my principle interest in gastroenterology is Inflammatory Bowel Disease. And so that's looking after patients with Crohn's disease and ulcerative colitis primarily. And within that I'm really quite research focused. I’m very much interested in clinical trials of new medications and new techniques. I got involved with a group back in 2018, back into 2017 actually, who wanted to try and involve patients as much as we possibly could into research and trials. And you know, that's such a multifaceted process. We ended up running two big national patient involvement days in research, and we've got a third planned for later this year. And so it's a steep learning curve in terms of involving patients and understanding exactly what that means, but it's been a fantastic journey and I'm glad to have learned a load from patients.
The pivotal role of the patient group (02:18):
NH: Okay. Can you just explain a little bit, because I know when we were prepping, you were talking about your very close involvement with the UK patient group. Could you explain a little bit, how does that work and what you do together?
MS: Right. I mean, so Crohn’s and Colitis UK have been a fantastic supporter of this initiative. They're the national patient charity you've mentioned for patients with this disease and ulcerative colitis, and really from the start they were very proactive in coming on board with the initiative that myself and a colleague who's a surgical trainee. He set this initiative up with me and a lot of senior support and really quoted clients as central to the whole thing because they're the people who can communicate quickly and easily with patients across the whole of the UK, and really we wanted to make this not just London centric or the South of England centric. We wanted to connect with patients all over the UK, in and around big cities and in the countryside. Whether you're a tertiary centre or a district general hospital, it should make no difference. We wanted to hear what you had to say and Crohn’s and Colitis UK have been instrumental with that.
NH: Okay. Just out of interest how many members do they have. They sound pretty well developed.
MS: Right. Yeah. It's a really good question. I don't know exactly what their entire membership is, but you know, for both of our patient involvement days that we've run, we had a hundred or so patients, but their memberships run into the many thousands I would imagine for sure. So it’s who I signpost. There is just so much stuff out there these days, social media, the internet. But I really make sure that their first port of call is Crohn's and Colitis UK. And there's some really good information there for my patients.
How doctors define patient engagement (04:45):
NH: From a physician’s point of view, how do you define patient engagement, because there’s a lot of people talking about it, multi definitions, what’s your one?
MS: Right, I've heard lots of people talk about it in different ways and to different levels. And, you know, it ranges right from the kind of old-fashioned box-ticking exercise whereby you can involve one patient by asking them one question and that's on our research forms. That’s what it sort of has been historically. But what I really think more about, and this is what one of our expert patients, although she hates being called an expert patient uses, are the words “patient integration”. So actually, the whole thing should be set up with patients. So, if you're talking about involving patients in say protocol design for a trial, you’d say “Does this trial answer the questions you'd like answered?” “Is it acceptable to you?” Actually, rather than putting the trial together and then putting it to a patient, if they're integrated in the whole process, then they're designing the trials with you and formulating the research questions with you. And I suppose that's not where we're at yet, but maybe that's where we should be aiming for. Maybe that's where we should be aiming to end up in terms of patients. So, I quite like the term “patient integration”.
Research priority setting (06:33):
NH: Could you give a brief description of what you see the research priorities are in GI and colitis from a patient’s perspective.
MS: In a practical sense for me with Crohn's disease there is a big unmet need in terms of treating people with perianal disease. And that's a really debilitating form of Crohn’s whereby you get fistula tracks, which are these unusual tracks around the bottom end that can really damage the anal sphincter, lead to incontinence, the passage of faeces, blood, pain and abscesses.
Even the best drugs we have are not great for perianal fistulation and often patients need multiple operations. And so to have better treatments. There are some on the horizon. They're not available just yet, but that's one big, big unmet need.
Another one in Crohn’s disease is fibrosis and scar formation, which can cause narrowing in the bowel. We've got lots of good drugs now for inflammation, but the problem is that untreated inflammation or inflammation that doesn't quite respond well enough to medical therapies causes fibrosis and scarring. And that can cause blockage and in turn often needs surgery. And so I think the next unmet need is to try and treat fibrosis. We're a little way off that. Actually, some of our colleagues in other fields are kind of further ahead with treating fibrosis in their various organs. But we're a little bit behind
Where has patient contributed in these priorities? (8:30)
NH: Obviously, I’m hearing there is a huge burden of the disease and an emotional burden and clinical burden. Now where has patient engagement contributed to this? Have they given you a list? How do you identify what the research priorities are?
MS: Right. So, exactly that. So, the James Lind Alliance, I'm sure you'll be aware of, ran a big priority setting initiative published in the Journal of Crohn's and Colitis several years ago now exactly setting out what should be our research goals. Actually, because I guess historically, and I can understand this, in the goals of research, the questions have always come from clinicians. Whether it's surgeons or medics. Actually I guess it's only recently, especially in my field, that we've started asking patients about what are the questions you want answered. And the two aren't always the same, the priorities of a clinician and a patient aren't always the same. And I think there's been an assumption going back years that they probably would be. So, patients must be involved, integrated, right from the start, the priority setting is important.
NH: Now that is quite an interesting thing because you mentioned both physicians and surgeons. Now surgeons historically have always been quite, how can I put it, they always put themselves very much in a more distant way with patients. How do you see this patient engagement working across an area such as yours, which involves both the physician and the surgeon?
MS: I mean, I've actually been blown away by the response of surgeons to these types of initiations. And I guess if you'd asked me four or five years ago, I probably would have to say thinking was as you outlined. I can totally understand it. But like I said, its a surgeon who set this up with me. And you know, we've worked closely with one of his supervisors, Phil Tozer, who’s one of the consultant colorectal surgeons at St. Mark's. And we've had involvement by another consultant, and lots of research fellows have come and presented their projects, their studies, at our research days. And I've been really blown away by how interested they are in patients, the patient choice and patient integration and involvement. So yeah, I was pleasantly surprised.
The three main success points (11:33):
NH: For you, what are the main success points for patient engagement?
MS: So the first thing to say about that is it's quite often playing the long game I think in terms of the research patient involvement. I think if you're involving patients in your data clinical service, which we do, the winds are maybe a bit quicker. You can sort of change in real time a bit quicker. With research often, if it's protocol design or protocol development, you see the fruits of your labours a couple of years down the line. That's how the timelines for research are like that. So, having set up these last two days, we've made material differences to research design, also research delivery, and also the way that patients are fed back information. Because those are the kinds of questions we've been asking. But I guess what we'd really like to see is the trial that we helped shape, recruit fully and report, and be able to put that back to this group of patients who have been so helpful and forthcoming with their time and energy and opinions and say, you helped build this. And I think we're probably a year or two off that.
What best practice looks like. (13:03)
NH: So what would you say is best practice, based on the experience to date?
MS: So if I could perhaps compare best practice to current practice. When thinking about applying for research ethics, where research ethics committee use a form called IRAS form. The IRAS form has a tick box and a free text for you to explain how you can involve patients. And most of the time, the big academics emphasis is on a research forum whereby you could ask a patient or two about how this trial seems to them. And that's the current practice I think in most places. What we try to make best practice, to come back to your question, is that actually you should take it to 80, 90, 100 patients maybe more if we can. If we can get our digital strategy working, which we kind of did last year, and I hope we'll do it more this year and get a consensus, a real genuine across the land, people in different cultures, different ethnicities. That should be what we aim for as a standard in terms of involving patients, rather than just one or two patients from your centre, kind of who you always ask.
Can patient engagement be done digitally? (14:52):
MS: Well, we've asked ourselves that question a little bit recently when I mentioned we have tried to up our digital game. At last year's event in Manchester we had several sessions live-streamed, and they're still listed on the UK websites. So if people are interested they can go and see them. We had people voting, with the potential to vote remotely if they wanted to as well as people in the room. And we've been asking ourselves the question of whether one can do meaningful patient involvement digitally, or whether you have to be in the room. You have to have some presence in the room to understand the energy, the atmosphere, the nonverbal stuff. And I think it's really difficult to do entirely digitally. I think having a feel for people in a room and having some digital capabilities for people. You want to involve people who can't make the journey or there's lots of reasons that people might not be able to come to the Sanger Institute in September and do our event with us, but we still want to know what they think and how they feel. So I think probably doing a bit of both is okay. I think doing it entirely digitally is hard.
When to involve a patient group and when to involve an advocate. (16:28)
NH: What’s your thoughts on when to involve a patient group and when to involve an individual patient advocate, and when to involve wider members of the patient community in initiatives? Is there a consistent approach? What dictates 25% patient community, 50% patient group? How does that work when you actually make the decision for the mix?
MS: It’s really hard to curate the audience for these days. And to some degree we focused more on the demographics and the kind of Inflammatory Bowel Disease-related characteristics of the people we’ve invited, because we’ve been lucky enough to be over-subscribed. We've been keen to get, as I mentioned, a range of people's ages, but also a range of people who've had surgery versus people who haven't. A range where the people are roughly equal numbers of men and women we have. Because we've had some sessions before on pregnancy and obviously not necessarily completely more relevant to women, but more often they are going to be more interested. And the other thing we tried to split was people with Crohn's disease and UC so you had a reasonably easy split. I don't know if that really answers your question, but that's kind of how we've looked at who we should invite to the days we've run so far.
We've also had people there who looked after their friends and family with Crohn's disease. So, they haven't all been patients necessarily, but the thrust was largely at patients themselves rather than public.
The role of the carer in patient engagement (18:45)
NH: There's a lot of discussion now about bringing the carer community in as a patient engagement tool. What’s your thoughts on that?
MS: Yeah. So in terms of carers, people with Inflammatory Bowel Disease by and large are young and other than their IBD they are healthy and independent. And so carers feature, I suppose, less in the disease that I primarily look at than some. We haven't yet included paediatric groups. But there certainly is a lot of paediatric Inflammatory Bowel Disease. And I guess then the carer issue definitely becomes a more real one with parents. And so if I was thinking about that and involving, you know, paediatric patients, young adults and children, it would seem unthinkable to do it without parents in some way for the really young children. But for the adolescents, it’s kind of up to them.
Cultural aspects; what HCPs are doing in other countries (19:53)
NH: Mark, you mentioned a little bit earlier on you were wanting to make this go a lot wider, in terms of the UK bringing in different cultures. How much, in your experience, are physicians in other countries getting involved in patient engagement? Is it just a UK thing or is it more widespread?
MS: No, I definitely think it's gaining a bit of traction in other places too. You know, we've had some collaboration and Caps and worked with a group from the States where they're starting to become really quite involved and interested in patient involvement. I kind of get the feeling from our colleagues and friends in mainland Europe that maybe we’re a little bit ahead of them in this regard. And you know, speaking to some of the people I know they don't even have the same sort of check box, the tick box on our research form. So definitely, this is a chance to kind of lead the way this side of the pond. And I think the fact that we've got a nationalized joined up healthcare system probably offers us certain advantages. And I definitely would like at some point to start inviting European colleagues over to present at the patient research day that we run. And that would be great to have some international collaboration in that regard.
The IBD research day (21:59)
MS: So we have a day of presentations by researchers and, you know, they don't have to be medical or surgical researchers. They could also be dietetics focused or a pharmacist or anyone really, who's got a study and they want some involvement with these patients. And so we'll have a series of talks that each last five, ten, 15 minutes maximum. Really patient-facing talks, you know, no complex science, all very understandable and clear messages. And then a couple of clear questions that you want, that the research would want us to answer from a patient standpoint. Then we'll have a discussion in the room and people will be able to air their views in general about the specific questions and about the project in general, if that's how they want to phrase it.
And then we'll have a voting session. The first time we ran the day in 2018, we did it all sort of white whiteboards and hands up and pieces of paper. And last year we sort of upped our digital game as I mentioned and we did online voting and I think that worked quite well. And so then we produce a sort of feedback document a couple of weeks later that we send to the researchers to say this is what you asked, this is what patients said. So we have some anonymous quotations, and the results of the polling questions. And, you know, we started last year asking the researchers to make a commitment, to act upon the results that we give them. So it's not good enough to just ask patients for their opinion, then find that you don’t like their answer and move on. So we kind of asked that they will make changes based on what we recommend.
Patient engagement in surgical intervention (24:22)
NH: What are your experiences with patient engagement in surgical intervention?
MS: Yeah. And so I've actually learned a lot through this because I'm not a surgeon. And I think when you're not surgeon you kind of perhaps think of things as being very black and white and you don't realize there's quite a degree of equipoise in terms of which procedure is chosen by a surgeon and exactly the thought process that goes on behind that. For example, at the first day run in 2018 they were asking about a study, the surgeons from Sumatra, looking at one operation called an Ileal pouch operation compared to another operation called an Ileo-rectal anastomosis. And these are both operations for ulcerative colitis patients after they've had the colon removed.
It's strange because in Sweden, they do a lot of the second operation the Ileo-rectal anastomosis. In the UK we tend to do Ileal pouch and it was about asking, would you be comfortable being a patient going into this study where you can either have one or the other, because there's genuine equipoise about which is a better procedure. How would you feel about that? Is that something that you think is acceptable? Would you want your surgeon to decide? Would you want to decide which of the two you had? So that's a question with drugs. We’d quite often ask that question to patients. Do you want this drug, do you want this drug, do you want me to decide, shall we decide together? Do you have a strong feeling? But I guess I hadn't really appreciated that it was the same for surgeons. Yeah, you get insights that you just don't get from reading trial numbers or research papers.