Sam presented at Oncology Professional Care conference on 22nd May 2024 and provides a rerun of those presentations in this episode. The first presentation is on patient and public involvement (PPI), including what it is, how it is done at Bowel Research UK, and debunking nine common PPI misconceptions. The second talk is based on Sam’s patient experiences of navigating the healthcare system with a genetic predisposition to cancer. Artist Francesco Tassi drew visual minutes for the talks from Sam, fellow patients and fellow presenter and Lynch syndrome National Lead Nurse, Laura Monje-Garcia.
Find out more about the PaRT network.
Visual Minutes (click to enlarge)
Transcript
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.
Hello and welcome to another episode of Can I Butt In? You’ve just got me today and I’m going to give you a rewind of a conference I spoke at recently. On 22nd May 2024 I had the pleasure of speaking at the Oncology Professional Care conference at the Excel in London. I presented with the lovely Laura Monje-Garcia, National Lead Nurse for the Lynch Syndrome Project at St Mark’s Centre for Familial Intestinal Cancer.
We gave a presentation on patient and public involvement or PPI, so I’ll share with you what I shared on the stage, including how we do PPI at Bowel Research UK and debunking some common PPI misconceptions. I was also one of four patients who shared our stories of navigating the healthcare system, so I will also share with you the stories I shared for that session. The most exciting and unusual thing about both presentations is that we had an artist with us drawing visual minutes of everything we said, and this mural-type image was displayed on a screen behind us so the audience could see the image being developed in real time as we were telling our stories. I’ve written a blog post about the event which includes the image so you can take a look. It’s a stunning and unique piece of work by Francesco Tassi, so thank you so much to him, thank you to Laura for inviting me to speak with her, to the lovely patient representatives I met and everyone who made the conference such a success. So let’s get into the first presentation, which is the how and why of PPI. And this was written for a medical audience because that was who attended the conference. But as we go, I’ll try and adjust for you, especially because I’m aware that you cannot see the slides that I am talking about. But don’t worry, all will be good.
The How and Why of PPI
So I’d like to start by telling you a story. I am a three-time cancer survivor because I have something called constitutional mismatch, repair deficiency, or CMMRD, which is because I inherited Lynch syndrome from both of my parents. Lynch syndrome is a genetic condition which increases a person’s risk of getting different types of cancer, particularly bowel cancer. Because I inherited it from both parents, I have something that’s more rare and increases my cancer risk for various other cancers further. And so I’ve had three different types of cancer, and I’ve had surgery for those. And so I’ve had a lot of illness experiences. Hospital experiences. And I’m also a writer. So in 2021, I wrote my memoir about everything that happened to me, and as a thank you to all of the consultants who had helped me over the years, I wanted to share my memoir. So I sent all of them a copy of my book, including my consultant, who had been my consultant at the time, for maybe ten years and so I sent him the book. We had an appointment a few months later and talk turned to my book, and he’d already sent me a nice letter about it. And, you know, he said thank you very much for sending it to me. I really enjoyed it. And then he said something that really surprised me. He said “I learned a lot from your book”. And that really surprised me because bearing in mind I didn’t know anything about PPI at the time, that was really shocking because I thought “as if I, a mere patient, could possibly have anything to teach a surgeon”. So that was really, really surprising that I could possibly teach a surgeon anything about my experiences. And that was the first time that I realised the importance of the patient voice in clinical care and in research. So of course now I’m Patient and Public Involvement Manager at Bowel Research UK and as you know, if you’re listening to this podcast, we fund early research into bowel cancer and bowel disease. So I wanted to outline what PPI is before we go into the misconceptions that are around it, and I’ll also talk about how we do PPI at Bowel Research UK. Patient and public involvement, or PPI, is when we get patients, carers and the general public who might, you know, just generally have an interest in the topic involved in research. And it’s really important to distinguish that this isn’t people going into clinical trials. It’s not people being researched on or as a subject of research. It’s people who are contributing their experience, skills and expertise as equal partners in research. So on the same level playing field as healthcare professionals and clinicians. So that’s really important, to distinguish that it’s not people being researched on, but people helping to carry out the research themselves. So PPI is really beneficial for researchers because it can increase their chances of getting funding. And of course it can enhance their study design and recruitment and generally make their study better. And it does that because it ensures that research is relevant and impactful for the very people it aims to help, because otherwise, what’s the point in doing it? Really. And PPI can benefit all kinds of research. So clinical research, also lab-based research, which I’ll talk about a little bit later and things like product development and device design as well. So academic research, but also for research in industry as well for MedTech and things like that.
So the way we do PPI Bowel Research UK. Well, if you’re a long time listener, you’ll know that we have our patient network, which is called people and research together or PaRT. There’s about 1,000 people in that network who at one point or another have expressed interest in taking part in research because they have experience or interest or they know somebody who has had bowel cancer or bowel diseases. So we reach out to that network or I reach out to that network on a regular basis, telling people what involvement opportunities are available to get involved in research. So I might simply be advertising a focus group opportunity for a researcher. I might be a bit more involved and I might be actually helping to recruit and coordinate those focus groups and recording them and creating the transcripts and all of that sort of stuff and the same for patient advisory groups as well and things like that, steering groups, any type of patient groups that patients can get involved in. Really we can help with and we can advertise, so it’s really beneficial to be part of the PaRT network and get onto that mailing list, which you can do on our website. Other things that we do at Bowel Research UK is serving as a co-applicant on a funding or grant application and part of that is because I’m a patient as well and I can offer my experiences as a patient. I can help to find other people who could be good patient co-applicants because of their unique experiences as well, and I can also be a PPI lead or coordinator and generally provide advice and consultation and that sort of thing myself. Other patient reps or people in the PaRT network can do are things like reviewing funding applications, reviewing lay summaries to make sure they really are lay, reviewing and helping to create patient facing documents and leaflets and all of that sort of stuff. I can also help to recruit PhD students by sitting on interview panels and things like that. And another thing that we can do in the PaRT network is we can help to disseminate research so we can do that through the charity social media or creating separate social media accounts for particular studies or websites for particular studies. Or in this very podcast, even with disseminating research. And the Big Bowel Event and various other ways that we can help to get the research out there to the general public so that people who are interested get to hear all about the great work that researchers are doing.
One example of this you have heard on the podcast before. And you’ve probably heard a few on the podcast by now, but one example of this is that we’ve been working with Odin Vision. Odin Vision is a company that’s using AI to enhance colonoscopies, to help clinicians to find polyps more easily during colonoscopies. And the way that we’ve helped with this is that we’ve organised virtual focus groups. We asked the PaRT network for people to come and take part in the focus groups. And focus group attendees gave feedback on the specific technology Odin vision is using, what it looks like, what it sounds like, what it would be like to have a colonoscopy with AI artificial intelligence being used, and then also their feelings about the use of AI in healthcare generally. Because that’s something that’s coming up more and more often these days. And I also have a quote hear from Alicia Toon, who I had on the podcast a little while ago, Alicia Toon from Odin Vision, and she said “Patient safety and user satisfaction are key goals in the development of Odin Vision medical devices, so we want to include patients that our technology will be used on in the design and their feedback shapes the future of our medical devices.”
So let me go into nine PPI common misconceptions. So these are a few things that researchers might think, or patients might think before getting involved in PPI. So I’m going to do a little bit of debunking now. So our first two misconceptions, I’m going to tackle them together because they are a little bit similar. So the first one is that patients won’t know enough or understand the subject enough to get involved in research, and the second one is that patients will be too scared to contribute. And we can debunk that second one right away because we can look at how there’s over 1,000 people in Bowel Research UK’s PaRT network who are not too scared to get involved in research and you may well be listening and you may be one of those people. So lots of people do get involved and volunteer to help with research and they’re not too scared at all. And the idea that patients won’t know enough or won’t understand the subject, if you’re a patient listening, you may fall into one of two camps. So there’s patients who may not want to know too much about their care. They might just want to the doctors to treat them. They might not really want to talk about it or think about it too much. Just go through. Take the advice, go through the treatment and try and get on with their lives and not really think too much about it. And then you might have people who are completely on the other end of the spectrum. Who wants to know everything about their condition and their treatment and their care. They might even read journal articles, academic resources to find out as much as possible about the biology, the science, the research, the treatment, everything there is to know. And we often say that knowledge is power. And then of course you can fall anywhere between those two camps as well. It’s certainly not. It’s not one or the other. But again, this debunks the idea that patients won’t know enough or understand the subject. And actually, if patients don’t know much about the subject, this is actually really useful for researchers as well, because this helps researchers to test their communication, their clarity and the lay language, that they are using early and often. Is there lay language really lay? If they want to apply for funding, they need to write a lay summary that plainly explains what the research is, what they’re doing, what they hope to achieve. If they want media coverage. If researchers want to disseminate their findings or their research to the general public that needs to be done in a way that somebody who isn’t closely involved in the project, isn’t a scientist, a clinician, it’s going to understand. And it’s really beneficial to have somebody early and often in the project to look at the communication and say, hey, I don’t understand this word or this phrase doesn’t make sense to me. And then that can really help to make communication as clear as possible.
So misconception #3 is that patients won’t make a difference to a project and maybe this goes hand in hand with the first misconception of patients not being knowledgeable enough on a subject. And while clinicians and researchers and scientists and product developers are all experts in their fields, patients are also experts in their experiences. What it’s been like for them going through the healthcare system, what it’s like living with their symptoms and going through treatment. So patients bring new perspective and skills to the table and actually that’s not just about their healthcare experiences, but other skills that could be useful as well because we’re all complete people. And we’re not just patients and everybody has their own skills that they can bring to the table. And also people can bounce off each other in groups. In focus groups, for example, one person might say something and then somebody else might bounce off of that and come up with something else. And you can end up with everybody thinking about something in a way that you didn’t think about it before. And it’s also a case of you don’t know what you don’t know. So who knows what could come to light in this situation?
Misconception #4 is that a researcher will lose control of the project if they involve patients, and that projects might be slowed down or distracted by asking patients for their opinions when in actual fact, being open to new ideas can help to make a project stronger. The researchers are still in complete control. Researchers are still making the ultimate decisions, but with patients involved, they’re doing that based on the new information that patients have provided. So they get a wider picture, they’re getting more information, more context, more understanding of the patient journey, and that’s completely beneficial and ensures that researchers still have control over the project. They’re just working with even more data than before.
Misconception #5 is that PPI isn’t representative enough and I would say that any small focus group is never going to reflect the views of every single person in the population. One person from one demographic isn’t going to have the same experience or opinions of everybody else in that same demographic, but that doesn’t mean that we shouldn’t try. It doesn’t mean that it’s not worth it to still have people there. And also organisations such as Bowel Research UK who coordinate PPI networks can purposefully seek out people from different backgrounds and different demographics, whether that’s age, gender, ethnicity, geographical location, in order to get as diverse a group as possible to make sure that, yes, while it might not be completely representative of absolutely everybody in a demographic, we still do the best that we can to be as representative as possible.
Misconception number six is that PPI takes too much time and effort. And actually it would waste far more time and effort to develop a device, a solution or a medical intervention without consulting the people most affected by it, so it’s well worth it to develop a solution that is helpful and acceptable to both patients and clinicians. The last thing that a researcher wants to do is to get to the end of a project, have come up with this solution or device or whatever it is and find actually, this isn’t something that patients are concerned about or this isn’t something that patients would be willing to use or go through. That would be far more time wasted than the time it would take to ask people’s opinions and get their input in research in the first place.
Misconception #7 is that PPI threatens the scientific rigour of research. And many funding applications now require an explanation of how PPI will be incorporated into the research. Researchers will know that if you apply to NIHR, for example, for funding, they will want to know how are you going to incorporate PPI. How are you going to involve patients in this? So it’s really important to funders. So funders believe that involving patients in the research will strengthen it. So it will certainly not threaten the scientific rigour of the research. People might think that patients are potentially biased, but actually everybody comes with biases. Researchers, clinicians. Everybody, we all come with our own biases and that’s just something that’s really important to acknowledge as well. And I believe that we spoke about that in the episode we did on IBD and stress with Jacqueline Black. So if you’re interested in that, have a listen.
Misconception #8 is that you can’t do PPI for lab-based research and I will admit it can be harder to see how to get patients involved in lab-based research compared to clinical research. Because it’s really easy to see how you can ask patients their opinions, their experiences and help them to understand the application of research in a clinical setting. It is harder, I think, to do that with lab-based research because that’s people looking at Petri dishes, people doing something very scientific with organoids, you know, lots of things that I certainly as a layperson don’t understand. However, we can still look at lay summaries and think about that clear communication that I talked about. You can still look at dissemination, so getting research out to the general public and how best to do that and also generally thinking about the end results. So where will this research eventually lead? And how do patients feel about that and what have patients experiences been? So there are still ways that we can do PPI for lab-based research. You just have to maybe get a bit creative with it.
And finally misconception #9 is that PPI is just a box ticking exercise and I hope that I’ve gotten some way to dispelling that today. PPI is a means to understand patients and ensure that research will help the very people that it tends to benefit. So if you’re a researcher listening. Please do get in touch. You can go to our website which is BowelResearchUK.org and I’ll put a link to the PaRT network page in the show notes as well, and you can also use that link if you’re a patient or expert by experience, or somebody who just has a general interest in research into bowel cancer or bowel diseases and would like to get involved in research. You can find out more by going to the link in the show notes.
Sam’s Patient Story
So that was the first presentation that I did at Oncology Professional Care conference and then after a short break, we moved into our second session. In this session, myself and three others shared our illness and healthcare system stories. And to capture the time and keep it in a place where it can be listened to over and over by lots of people and more than the people who are at the conference, I would like to share my story with you now. I’d like to preface all of this by saying that this is my personal individual experiences of illness and the NHS. Whenever I’m talking about this sort of thing on the podcast, I’m always talking from my point of view, my opinions, rather than on behalf of the charity. This is me as a patient talking to you.
So, hello, my name is Sam Alexandra Rose. Before I get into my medical history I’d like to introduce myself outside of being a patient. I’m a writer, a big rock music fan, and I live in Northampton with my partner of around 17 years, Peter. I work at Bowel Research UK and I’m doing a creative writing PhD part-time, researching how writing about my cancer experiences might benefit me. I’ve also written two books: Gut Feelings: Coping with Cancer and Living with Lynch Syndrome and the CMMRD book. My medical issues started when I was diagnosed with bowel cancer at the age of 22. After genetic testing I discovered that my parents both have Lynch syndrome and I had inherited it from both of them, so I have constitutional mismatch repair deficiency or CMMRD, which increases my cancer risk further. I have had three different types of cancer so far – bowel cancer when I was 22 in 2010, and duodenal cancer and womb cancer both at the same time at the age of 30 in 2018.
But I’m not here today to go into detail about my individual cancer experiences. I had my time of shock and sadness about my diagnoses and surgeries. These days, the most pressing part of my story is about living with CMMRD and the regular surveillance that requires. For me, this means a brain MRI every six months, a full body MRI once a year, a flexible sigmoidoscopy every year, and a capsule endoscopy placed via gastroscopy every year, and blood tests and skin checks as well. If that sounds like a lot, that’s because it is. With CMMRD you both don’t have cancer (hopefully) but at the same time, maybe you do have it. When you’re living between tests, it’s basically Schrodinger’s cancer.
I like to make light of it like that. I have to use humour because this experience is mostly fear, or bouncing between fear and relief. For example, during the pandemic all my appointments were delayed and I probably should have been worried but I was actually relieved, and glad to be left alone for a while. But it’s mostly fear and anxiety, and often that’s made worse when communication doesn’t go smoothly. And communication between all parties is particularly important when you’ve had three different types of cancer, and have been under a different consultant for each one, plus a geneticist.
So I’m going to give you four examples of communication going a bit wrong in my experience of the healthcare system. I’m going to jump around my timeline a bit so bear with me.
Number one: The case of the missing consultant (and the missing results)
So after my consultant and his secretary both retired in 2021, I had one appointment with a registrar in January 2022 and then saw nobody for a long time. I was still being sent to my scans and surveillance so clearly someone was paying attention but after not having my annual consultant appointment in January 2023 and receiving no response from my new consultant’s secretary I got PALS involved in August 2023 and finally received a resolution from them in early 2024. Turns out the new consultant hadn’t been told anything about me or that I had been given to him, so I had effectively been under no consultant at my local hospital for maybe two years. This explained why I hadn’t received results for my MRI scan and capsule endoscopy months after I had done them. Things are getting back on track now and I know this was a bit of an anomaly because you would hope that a patient would always be under somebody and always have that communication. But it was a very stressful time because I didn’t know what my results were, if anyone had looked at them, if anyone was paying enough attention to send me to my next endoscopies, or if there was any point in me going to my endoscopies if nobody was looking at the results. I didn’t know if the team was taking an approach of only getting in touch if things weren’t okay, or if no news was good news. No communication and no confirmation of the all-clear after tests was a huge problem for my peace of mind.
Number two: The case of the mystery referral
While all this was going on – or not going on – I had been referred by someone (who knows who?) from my local hospital to St Mark’s specialist bowel hospital, perhaps in the hopes my surveillance would be completed at this specialist hospital instead. The first I heard about this was when I received an email from St Mark’s saying I had an appointment with them. But nobody had communicated to me that they were referring me there. And since I was currently awaiting results from a capsule endoscopy I feared that something was terribly wrong, the cancer had returned, and I was being referred to St Mark’s to deal with it. With no further information to go on except this appointment email and my lack of endoscopy results, while panicking and crying I managed to get hold of a key worker at my local hospital. She called me back and said everything was fine as far as she could see, they just wanted specialists at St Mark’s to advise them regarding my surveillance for my CMMRD. Great. Get a specialist involved. But please tell me you’re going to do that before you actually do it so I know why I’m being referred.
Number three: The case of the unexplained appointments
On the other hand, communication can come too early or indirectly. After I had Whipple surgery for my duodenal cancer, I found out I might need chemo, which I had never had before. I found that out from a letter I was copied into, which was sent from my consultant to the oncologist he was referring me to. I had no idea that was coming and with no conversation or context it was not a good way to find out – not being told myself directly, but being copied into a letter sent to someone else about my care. Another time, just after my duodenal cancer diagnosis, I received an appointment for my first capsule endoscopy before I’d had the appointment with the consultant to tell me what the procedure was and why I was having it. So, a bit of confusion there. I don’t know what the solution is to that because it’s generally good when things happen quickly. But as I hope I’m conveying, a genetic condition and an increased cancer risk can massively take its toll on mental and emotional wellbeing, and every instance of communication can impact that in a positive or negative way. And amid trying to advocate for ourselves it’s not always easy to know what questions to ask, especially when I’m feeling overwhelmed.
Number four: The case of the slightly pointless meeting
In summer 2018 I had both duodenal cancer and womb cancer and gynaecology and gastroenterology teams were trying to decide between themselves what to do with me. So there were lots of tests and lots of waiting around to find out what the plan was. Turned out I was quite an interesting case and every consultant wanted to be my consultant. I had been referred to another hospital about an hour away from me, and I remember going to an appointment to meet a consultant just for the sake of meeting them. I don’t think I got much new information from that appointment. I was greeted like some sort of celebrity which was weirdly nice, but it was about three hours my partner and I both had to take out of our work days to drive to the hospital to show my face and be told not very much. I mean, I’m okay with my celebrity status, but still.
As an added bonus story, when I talked to my geneticist in 2019 she had no idea my second and third cancers had even happened. So more joined up communication across all departments and consultants would be great. And actually, going back to the case of the missing consultant earlier this year, once I did meet with a consultant, we had an appointment that lasted nearly an hour (I’m usually lucky if I get ten minutes), and we came away with a plan and he wrote a letter summarising our discussion where he copied in EVERYBODY. St Mark’s my geneticist, my GP… I swear, if Santa Claus himself were involved in my care, this consultant would have copied him in. That’s the way you do it.
So, takeaways. In my experience of the NHS, poor communication causes the most problems for me. Lack of communication leads to me trying to second-guess what’s going on, why I haven’t had results, and not knowing how the medical system works doesn’t help with that. Do patients know exactly who they need to contact for what purpose? I don’t always know. And if I haven’t had my MRI results back yet is that probably because there is nothing sinister-looking so my results are low priority and everything is fine? Maybe patients could be told more about the inner workings of the NHS so we understand it better and know when to worry and when not to, and who to go to when we need information.
We need that information because the admin burden on patients is huge. Arranging appointments, advocating for ourselves, getting results, making sure different departments are talking to each other. Good communication from the hospital lessens the burden on me. It means I don’t have to take time out of my busy work day to chase results or find out what’s going on. Because I don’t want to have to think about this stuff while I’m working. Living with CMMRD means constantly balancing two worlds – the medical and the “normal”. The more people in the medical world comes to me with good communication, the more I can peacefully enjoy my regular life with minimal interruptions and good mental health, safe in the knowledge I am being looked after.
And it’s vital because living with CMMRD is a lifelong thing. I’m never going to get rid of it so I need to be able to enjoy myself, plan holidays, and dedicate myself to work and social gatherings and family like any other person would. When you have a medical condition, you have all the burdens of a normal life like everyone else – running a household, going to work, doing the shopping, maintaining relationships and friendships – but with this medical problem on top as well. So I ask: Please make communication thorough, timely, and collaborative across departments. This condition is never going to end so I need to accept this part of my life and be able to deal with it effectively. CMMRD is always going to be a problem. Communication doesn’t have to be.
I’ll leave you with this thought: It’s not enough for me to not have cancer. It’s not enough for my doctor to know I don’t have cancer. I need to know I don’t have cancer. Thanks for listening.
Thank you for listening to Can I Butt In? This podcast was brought to you by Bowel Research UK. Find out more about the charity, our work and how you can get involved. Visit BowelResearchUK.org where you can join our People and Research Together network or PaRT; read about our research campaigns and fundraising; or make a donation to support the vital work we do. Let’s end bowel cancer and bowel disease.