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Robin Daly
Hello and welcome to the Yes Life show. My name is Robin Daly and it’s been my privilege to host the show since 2015, during which time I’ve spoken to hundreds of experts in integrative oncology from around the world. If you’re new to the concept of integrative oncology or integrative medicine for cancer, then what it describes is a very rounded view of cancer treatment that aims to meet as many of the needs of patients as possible, a kind of 360-degree approach to medicine. My guest today is a regular on the show and a passionate advocate of integrative oncology. Dr Nina Fuller-Shavel is co-chair of the British Society for Integrative Oncology and she runs a multidisciplinary clinic in Hampshire helping women with a range of integrative cancer support services. Today we’re going to be talking about a new venture she’s launching, an app tailored to the needs of those with cancer that aims to introduce them to evidence-informed integrative approaches and the ways that these can help them. I’m speaking to Dr Nina over the internet at a synthesis clinic. Always good to have you on the show. Welcome back.

Dr Nina Fuller-Shavel
Thank you very much Robin, great to be here.

Robin Daly
So today we’re going to be talking about an exciting new development that’s coming up. The reason I’m particularly enthusiastic about this development, given that it’s SNAP-based service, is because I know that the source for the information it delivers is a reliable one. I can be confident that the recommendations will be based on the latest science and in-depth clinical experience. So can you start off by telling us what it’s called and what the overall thinking behind its development is? What gap are you aiming to fill? Sure.

Dr Nina Fuller-Shavel
So the app is called Oncio and it comes from a CIC or community interest company with the same name, really. And we set up the CIC with my co-founder, Dr. Penny Kechaglioglu, to really try and fill the gap for high quality and practical integrative oncology information. And what we know as well is that information in and of itself doesn’t always get put into action. So my thought behind this resource is really to create an app first for patients or people going through a cancer process and then people who have gone through it and are emerging the other end, but also later on for professionals to be able to use this information in clinic. And what we have realized through various conversations with oncologists and nurses and professionals in the NHS and private sector and charity sectors is that people would love to do more integrative oncology and their patients would love for them to do so, but they don’t have the time and they don’t have the resources. So what we aim to do with Onkyo as an app is to provide high quality, evidence informed guided programs for the person to be able to work through themselves at home under the guidance and with communication from the healthcare practitioner. They can choose what program they engage with depending on their needs at the time, and they can choose to share their information with a healthcare practitioner via practitioner portal, which means that we can get proper integration between them doing something at home and also what is being seen at the clinic.

Robin Daly
Interesting. So kind of joining up as well as being educational and directive for people. Really helpful. Okay and so can you give us maybe the context for this development? I mean who’s involved and under what umbrella? What’s the overall aims of this CIC as he called it?

Dr Nina Fuller-Shavel
Yeah, so the overall aims of the CIC are twofold, really. I said the first one is very much around education. So that’s looking at digital health resources for patients through the Onkyo app. And then later on for professionals with Onkyo Pro. That’s not going to be coming out this year. I can tell you that because that’s a huge project in and of itself. Yeah. And then anything that the CIC will generate in terms of income or funding will go into redevelopment of the app and providing more resources. But we’ll also go into supporting research both on the actual digital health intervention. We want to research the app and make sure it’s clinically effective. But also for supporting any other projects that are particularly aiming to serve the information gaps and those gaps identified by the World Cancer Day as a priority is including looking at some of the communities are underserved by the current care and also affected by health inequalities.

Robin Daly
So there’s multiple ways in which this has the potential to change the face of things. So it’s working not just with the patients and helping them directly but you’re saying that in the future it’s going to be helping the practitioners to work more directly with the patient data but it’s also going to be able to help researchers by be able to access that data anonymously presumably and find out what’s going on on the ground, what people are doing, what’s working for people, what’s not and actually produce some evidence for the effectiveness of some of these things.

Dr Nina Fuller-Shavel
Yeah, absolutely. And I think this is where, in a way, the whole app has been designed to be a very practical app for people going through cancer, because as we know, just information is not enough either. We need engagement, we need someone to take a step by step through a process. You can read all you like about an anti-inflammatory diet, or the fact that you have to move during cancer treatment, or the fact that there are ways of supporting your emotional well-being. But actually, how you engage with them very much depends on is it easy enough? Is there someone you trust to lead you through that? And that’s really where we have picked our contributors very carefully, and have asked them to create programs that are two to four weeks long, that have a daily video informational piece and action, the commitment people can make every day to improve their health and well-being. And that firmly, for me, puts the power back with the person going through treatment, or survivors or people living well with cancer, because it is something you can do every day. Your medical team does their bed, but you also need to do your bed for your own health and well-being. And so it puts high quality information that’s actionable into your hands.

Robin Daly
Hmm. Interesting. Well, yeah, absolutely. You’re right. Well-meaning advice. It doesn’t go very far, does it? Yeah, you need something to actually take you along the way. So, it’s particularly exciting to have something like this coming out on a community interest basis rather than for profit because it’s going to… Well, it’s got the capacity to harness an extraordinary amount of goodwill, I think, working in that way, which, you know, is going to add enormously to its potential and credibility, I think, in the long run. Tell me about why you chose that particular route.

Dr Nina Fuller-Shavel
Well, we really wanted it to be free at the point of care like the NHS currently is. We want it to be available to anybody. And so we wanted to create something that was an initiative that’s co-created with the community. And to me, the CIC is an ideal vehicle for that. We would love to eventually potentially might transfer to a charity status. But right now for us, it’s about engaging the community, about making it available completely free of charge to anybody affected by cancer and healthcare professionals who want to take a look. And for us to be able to use it as a vehicle to fund further development into this, to really put integrative oncology in action through digital health resources and research further down the line. So it’s really, really important to me that people don’t have to wait. They don’t have to be dependent on the resources. And of course, it will also allow us to reach communities that are underserved by current healthcare needs. And also through, we also are looking at doing different languages. So to reach both people within this country who may not be able to access resources in English, but also to then later on look at Europe and the rest of the world to try and to also involve people that are wider than just the UK.

Robin Daly
Well of course it’s absolutely brilliant the thing is free because yeah I mean one of the major stumbling blocks of all medicine that’s not NHS provided is the cost as soon as you have one person who’s even if you go to a class with 20 other people it still costs and so to actually have a completely free app with a whole range of stuff on it of resources is fantastic. So you’ve got a picture of who exactly the app is targeting.

Dr Nina Fuller-Shavel
Good question. Well, it’s multiple pictures, actually. And this is also the reason why we’ve got our people with lived experience on board as well. So I would like to see this being used by people from the point of diagnosis all the way through kind of before, during and after treatment and for people living well with cancer. It really spans for me the whole cancer care continuum. Anybody who’s been affected can use it. And we also have people on the panel who are family and carers, because I think it’s also really important to hear from people who are going to be looking after people with cancer, actually, what do they find helpful? What would they think could have transformed their loved ones care at some point or another? So we have people throughout the cancer care continuum advising us. And of course, as you’ll know, I will draw on my clinical experience of working with the whole spectrum of people within that. And so, well, Dr. Penny, and so with the professionals who come on board as content contributors.

Robin Daly
So, what basis are all these other professionals coming on board? Are they volunteering this? Nope, they are being paid.

Dr Nina Fuller-Shavel
for it. So at the moment, I will be very honest, I’m bootstrapping this. So effectively, I am, I am, I am contributing to this out of my own funds have also been poking friends and family to donate to this initiative, who they’ve kindly done so. So we will be asking for donations from the community, anybody who feels able to, absolutely. So we’re in the process of setting up a formal process for that. And, and of course, any organizations who want to contribute as well. But currently, effectively, I’ve, it’s a Dr. Nina friends and family, funded initiative, because you have to get off the ground. Ultimately, I cannot wait for all the grants to come through. We are applying for some grants. But, you know, we, if we continue waiting for grants to come through, we will never get off the ground. So I it’s so important. And I can hear every week speaking to Professors NHS, I wish I could do more. I wish I could tell people a little bit about this, but I do not have the time. I don’t have the resources to guide them through it. I need good, high quality information to point them to. So that’s really what we need to do. We want to make oncologists and nurses and physios and everybody’s lives in clinic easier, you know, because people who want to engage with it can be advised to do so by their clinicians. We want to support the charity sector already doing a huge amount with the resource that they don’t have to then do. And they can focus on delivering more targeted more one to one support more live group support, that sort of thing. And and yeah, we want to make it really accessible, very simple to engage with where you’re at. You know, you you can come to it, you can just poke around and say, Okay, well, maybe I fancy doing a little bit of mindfulness, maybe I want to look at how to move better. Maybe I want to know how to take care of my scar, whatever bit of information that you’re interested in finding out that’s really where the app aims to meet you. The other interesting feature of it, which I think is really important is that we also aiming to utilize some of the technology that people might already be engaging with. So that’s various wearable things, you know, your Fitbits and your various rings and bands and everything else that’s out there. And if you do use that kind of device, or if your phone has something like Apple Health on it, you can choose to plug that information into the app and see how your parameters change as you change things in your life following the apps device.

Robin Daly
Yeah, very rewarding.

Dr Nina Fuller-Shavel
I think it’s a great motivating tool, isn’t it? You want to see if it makes an impact, and if that doesn’t make an impact, maybe we need to change tack and try something else.

Robin Daly
Right. Excellent. So, good on you for getting out your wallet and getting it started. It’s an act of faith. If you’re hoping the money’s going to come in afterwards and you’re giving it away free, that’s, yeah, definitely an act of faith. But, yeah, really great because you’re right. That’s what people need is they just need something that they can just use. Just tell me, obviously, ideally, it would be commonly known within oncology circles that this app was a great resource and people would just be saying, oh yeah, well, you’re interested in that kind of stuff. Have a look at this and they would be referred. What are the prospects of an app being adopted by the NHS so it’s kind of NHS approved?

Dr Nina Fuller-Shavel
I think they’re very good prospects. So we have an advisory board of professionals that include oncologists, oncology nurses and various other professionals that span all the sectors, you know, from private to NHS to charity sectors. So we have a good advisory board. And absolutely the plan is to get this app NHS approved. We know it takes some time. So it will be a process that we go through. And we are hoping to also informally trial it with people. At the point as we’re going through the approval process, we will ask some of our partners and some our advisory board to trial it in their clinic and get some feedback for us. And so we can always continue to improve it. So I would love to see this prescribed in every oncology department as part of someone’s care. And as healthcare professionals themselves maybe get to play around with it, and see where it’s useful, they can become quite targeted with their recommendations on it. So for example, there will be a two week course on how to help your gut microbiome. So for example, if you have a patient who’s about to start immunotherapy for their melanoma, and you know that for them, their gut microbiome health directly can impact their health outcome on this treatment. You can say, well, why don’t you go on this two week course? This means that the oncologist and nurse doesn’t have to do all the counseling around what foods to eat and what to do. That’s already built into the app, and then they can get some feedback on how someone’s gotten on. And it’s very practical, it will have resources, recipes, so you’re not just sitting there receiving information. You’re actively engaging with getting in your kitchen, you’re doing things. It’s very much you as a part of this process. And so it feels like you’re not just sitting there waiting for treatment to start, you’re actually doing something to help optimize what’s coming next.

Robin Daly
right okay so maybe we talk a little bit about what’s in the app well first of all maybe we talk about how it gets in there you talked about a board of people who are working at this i mean how how is it decided what’s to go in there who’s to do it what does it still look like what’s the decision process

Dr Nina Fuller-Shavel
Good question. So the first part of the process is really comes from the whole definition of integrative oncology and the key components of the integrative consultation. And that’s really around nutrition, movement, sleep and psychomotion will be because these are the core four that we would normally advise on in the setting. These form the core dimensions first. However, we are also fully aware of the fact that people will have different needs. So we are sending out a survey that’s going to run over the period of two weeks to get people out in the community to input into this and say, okay, I need a resource on this, or I engage with my technology this way, or actually, I hate technology, so how are you going to make it easy for me? So it’s one of those things whereby we are aiming to engage the community in the design of it. We’re not deciding for people what’s useful to them. We’re going to seek some feedback and co-design the initial what we call minimal viable product, which we’re aiming to launch in June at the IPM Congress. And then within the app itself, there will be a suggestion button. So you can suggest content, or you can suggest a resource that might be particularly interesting, or you can ask a question. And then at regular periods of time after the launch, we’ll be reviewing that information and prioritizing the next phase of development, particularly as we get hopefully the grants come in, then we can really take that off into making it much, much bigger. But for now, we’re aiming to launch in June with covering nutrition, psychomotion, wellbeing, sleep and movement, with a little bit of a small symptom hub, because we want to be able for people to get some information on how to manage their symptoms in a non-pharmacological way, because pharmacology is covered by their medical team, but they also need to know there are things that they can do themselves, and how to access those resources, and some pointers to general information as well. So it’s important that people will find something for themselves within that resource.

Robin Daly
okay so maybe we could just look in a little bit more detail at those areas you just described so what are they going to get in those four sectors

Dr Nina Fuller-Shavel
Sure, within the moment they’re going to get a probably one or maximum two programs within each, and that’s just to get us to launch the app and then later on we’ll develop more resources. So for nutrition, we’re looking at an easy two week to a better microbiome program. And we that’s just focusing on people trying to eat a kind of this diverse anti inflammatory high fight nutrient diet, your 30 plus plants per week, etc, etc. And make it really practical so that people actually get in their kitchen and cook something or they can assemble something really easily when they’re tired. For movement we’re looking at a couple of different things we’re looking at prehabilitation and some of the rehabilitation guidelines and Vicky Fox who’s absolutely wonderful is doing a yoga to alleviate joint pain so helping with joint mobility and joint symptoms so that’s going to be really lovely. And then we’re looking at psycho emotional well being so we’ve got EFT and mindfulness within these components and we are also hoping to include breathwork and it’s just all about time and resources you know trying to line those up.

Robin Daly
It’s ambitious. And for sleep.

Dr Nina Fuller-Shavel
at the moment we’re not going to have a fully dedicated program but we will have a resource on sleep so this is much more going to be about here are things you might want to try pointing them to free resources already available such as the Sleepio app available via Macmillan on the NHS for CBT for insomnia and other resources they might want to engage with and then later on we are hoping to do a two weeks to better sleep program which will get people to try different things. So that’s kind of the basics at the moment I’m sure it will grow and morph as we go along.

Robin Daly
I’m sure it will. Yeah okay and I imagine there’s sort of different levels at which people can engage with this app. Either they can just dip in any old thing they fancy but if they kind of sign themselves up they can be inputting more of their own information and therefore getting more out. Do you want to describe how it works?

Dr Nina Fuller-Shavel
Yes, absolutely. So I think at the beginning, we are going to ask some basic information from people. So just a little bit about their demographics terms of who they are, what kind of stage of cancer journey they’re at. So in terms of where on the cancer care continuum. So we can tailor their resources and also what kind of cancer they might have been affected by either currently or in the past. So it allows us to do a little bit of research, but also a little bit of personalization of content because of course if you’ve been affected by prostate cancer, you probably don’t want to see breast cancer information on the app. So it will allow us to do a little bit of tweaking. Now again, it’s probably in infancy at the moment. It’s a bit more general right now, but we do have personalization built in for later points. And then if they choose to plug in things like their wearables or want to log their symptoms, they really will get a lot more out of the app and they will help us with the research we need to actually show that some of these interventions are effective. And they can also be delivered effectively via digital health intervention. So ideally we want people who do commit to a program to try and stick with it as much as possible and log as much as possible so we can improve things. We can improve it for the whole community really.

Robin Daly
So actually this sort of deeper engagement is really important to you as the developer of the app and actually you need that in order to actually really know which direction to go with it.

Dr Nina Fuller-Shavel
Absolutely. And actually in a way we’re going to be monitoring and we’re going to be consenting people for their data to be used in the auditing of the app. So everybody can choose what they want to do, but we would very much like for people to consent to their anonymized data being used for audit because that’s the only way we move the needle along in integrative oncology by saying actually this app intervention works and this is how it works and how it improves quality of life. So to aid that we are engaging with validated symptom scores and so we’re currently in conversations with a couple of organizations to make them available via the app so that we are at the beginning not using Mickey Mouse ratings, not using something as one to ten on a random scale, but are using validated research tools to be able to audit how effective the app is going to be.

Robin Daly
Right. So this is as per a research trial would be run.

Dr Nina Fuller-Shavel
Effectively, but it’s more of an audit rather than trial at the moment. But yes, in the future, exactly what we would want to do is to put this app up into a trial, a clinical trial and prove its effectiveness. Absolutely. And to that end, we’ve been engaging with a number of researchers and including health psychologists to help us design the evaluation and to help us push the app forward in the future. Um, because to me, as you know, me as a scientist, I want to know exactly what the metrics are. I don’t want to just put a resource out then hope is going to be helpful. I want to make sure it’s been proven to be helpful and it’s tailored for the people it’s meant to help rather than anybody out there deciding what’s right and what’s not.

Robin Daly
I noticed you said you’re launching it at a professional event. Are you thinking in terms of the fact that you’re going to aid it spread through informing professionals about it and you hope they’re going to recommend it to their clients? Yes.

Dr Nina Fuller-Shavel
Absolutely. That’s the design. And of course, we will be doing some work on social media around that time as well. And we’ll be engaging in other ways of getting the information directly out to the community as well. And I know you kindly, Robin, offered any support from Yesterlife. So we’re very excited about having you on board and having you support us. Ultimately, what I feel is that for us to move integrative oncology forward, we need the sandwich, right? We need the community asking for these interventions and using them. And we need the professionals learning about them and recommending them. And in the middle, that’s where we have the magic.

Robin Daly
Okay all right so you said the symptom relief part of it is in its infancy along with everything else but what’s the plan? How’s this thing going to help people?

Dr Nina Fuller-Shavel
So the plan is that we’re going to start with areas where there’s already some guidelines around, that already review available evidence. So for example, there’s been two recent SAOSCO guidelines, one’s still to be published, one’s already published on pain. So what we want to do is we want to communicate with that group of people, we want to make it a living guidelines, something that actually people will be able to use as people affected by pain. So for example, if you have breast cancer and your postmenopausal and you’re hormone positive, you’re quite likely to end up on a drug called neuromatase inhibitor. Now that can give you some reasonably horrible joint pains and other problems. So what we want to do is we want to say that actually there is no good drug for it, there is no pharmaceutical intervention that works particularly well for it, but there are non-pharmacological interventions that can help and acupuncture is one of those. So what we want to do is we want to take this guideline and say, depending on what pain you have, these are non-pharmacological interventions that are recommended in those guidelines. This is what they are and this is how to access them and this is what to ask your healthcare professional about so that it becomes very practical because guidelines are read by healthcare professionals, which is great, but we also want to give this information directly to people who are needing that support and help.

Robin Daly
So, as I said at the outset, I was pretty confident that you’re going to be putting out science-based information here. From a practitioner’s point of view, can they quickly verify that that’s what it is? Is a scientific basis built into the app in some way?

Dr Nina Fuller-Shavel
So certainly within the symptom relief hub, we will have the references for that. For the day by day intervention, what we would tend to do is just have a list of references for the whole program rather than reference every single day, because it will become quite laborious for people to go through them. So there will be at the end, you’ll be able to reach kind of day 14, and you’ll be able to click through the references. But ultimately, every single intervention would have been thought through to have some evidence base. We know the evidence base isn’t perfect. We have to also hold our hands up and say, guess what? It’s not perfect, but nothing is. But we have to also say there’s a lot of action information in the research that’s not being used right now. So that’s what we’re aiming to do with the app is to make it usable by a person who just wants to improve their symptoms, who want to get through treatment better, who want to achieve better outcomes, and improve their quality of life.

Robin Daly
Well, anyway, obviously, if you’re aiming to actually get it out to people via practitioners, you’re getting practitioners on board as a number one priority, so they have to be confident this is something I could recommend without worrying in the least.

Dr Nina Fuller-Shavel
Absolutely. And actually, this is, again, where the confidence comes from our advisory board reviewing it, there will be a list of reference of people who are interested in looking at those. And also, the practitioners can engage with us by the practitioner portal, and that’s kind of the paid for feature of the app is actually not what it’s costing to people affected by cancer, but actually, if you want to have, say, 30 of your patients and you want to have a portal that reviews all that information for you, then that’s where there would be a fee for that. So we are hoping that’s going to help us ultimately fund the development. We’ve got to get the money from somewhere and grants are one thing, but I actually think you will help practitioners in the integrative oncology space because if you have a portal that looks at what people are doing on the app, their engagement, their wearable data, what they’re reporting is symptoms. What a powerful tool to use in your consultation, right? To say, I see you’ve been doing this, this has been improved, but I see you’ve got some niggling symptoms. Let’s focus on those in our one-to-one consultation.

Robin Daly
But also, that practitioner will be able to tell what’s really working with a large group of his own patients and pass that information on.

Dr Nina Fuller-Shavel
Absolutely. And that’s why we always are looking to listen to everybody. So we’re looking to listen to the community of people affected by cancer, carers and family, professionals working within this field. And we’re wanting to make that very much a co-design process.

Robin Daly
that’s really important. I mean, you know, a lot of the problems in medicine which integration is looking to address are because there’s a large tendency for people to be told what they’re going to get and not to have any part in deciding it at all and it might not suit them. So yeah, from our point of view, you know, where I was looking from the patient perspective, that kind of engagement is entirely what’s wanted and the expertise of the medical side meets the actual needs of the patient and then you get some good results then.

Dr Nina Fuller-Shavel
Absolutely. And also the different communities have different needs. And that’s where, again, we will be looking to get feedback from different communities when we come to certainly the language toggles. And we will be asking people, and we will be doing focus groups with people in their language asking, what do you need? And we’ll be talking to professionals who serve those groups as well, because they might be seeing a need that’s also unanticipated, but maybe someone else from that perspective. So as we know, there’s multiple cultural influences on how we perceive cancer, on how we go through treatment, what we are uncomfortable with discussing. So I think that’s where we need to go to the communities and say, what do you need? You tell us what you need. And then our job is to find the right people, the right resources, the right evidence to deliver that sort of thing to you.

Robin Daly
Very interesting. Yeah, I mean, it’s quite clear that a solution that’s entirely useful and suitable for one group of people could be just completely off the wall for another group. So it’s just not tenable for them. So yeah, good to know. So you mentioned you’re going to have some general information in the app. What’s that going to cover?

Dr Nina Fuller-Shavel
So it’s really just more about linking people to other resources. So we’re not aiming to be Macmillan. We also not aiming to be Penny Broad or Yes To Life or anybody else, but we are aiming to link people to where to find certain information. So we’re going to be talking to different charities to say, okay, what kind of information you’re happy for us to link to so that people can also find other information that’s maybe not necessarily integrative oncology based, but maybe they want to look up a medication, maybe they want to look up the wigwam groups in the area, maybe they want to look up what’s next on the Penny Broad UK online classes, so that we can also link up with whatever charity resource are available to people freely, so that people don’t have to sit then find out themselves. It’s really hard work to sometimes try to find these resources yourself. So we want to try and get a little bit of a library that also gets more engagement for the charities too.

Robin Daly
Great. And I bet you’ve got a very big picture for this, you know, your vision for the whole thing. While it’s all singing, all dancing at some point in the future, do you want to just tell us a bit about that, where you think things heading, what you’d like to see it able to do?

Dr Nina Fuller-Shavel
I’d like to see it as an international resource really that is prescribable by everybody in clinic through all the three sectors, public health, NHS or whatever care system you have in that world, private care, charities. We wanted to be a resource that’s available in all the different languages. Obviously, I’m not saying all of them, but as many of them as possible. And we wanted to grow to be a resource that people can really trust and something that will really drive the action of implementing integrative oncology. Because to me, this is where we’re coming up in terms of a challenge is the practical things. How do I implement it in my NHS practice? I have 10 minutes. How do I do this? So you do it by referring it and by getting some feedback and by learning something about. And then the next big thing is the OncoPro and that’s the resourceful professionals that is continually being updated. But as you could imagine, I’d need a good research team, a number of science writers, we’d need to get the AI on it as well, because it will need to be fielding new research into it. So that’s a bigger vision. But I think to me, we want it to be the go to resources for people who want to support themselves through cancer treatment and beyond. And being able to do it in an evidence informed balanced way rather than getting, as we know, crappy information of the internet from someone who’s been qualified for an hour or two.

Robin Daly
Well, I mean, nobody’s more aware than you that actually these little apps, which we all download merrily, there’s an immense amount of work by now. I mean, you know, this is a fourth rail bridge on steroids in as much as the amount of maintenance just for the information you’ve already got will be huge, let alone adding more. So yeah, it will need a real team of people eventually to maintain and develop the whole thing, won’t it? And to keep it up to date because science is just a moving target.

Dr Nina Fuller-Shavel
Yeah, absolutely. And actually, again, as we listen to the community and their needs expand, we will find different niches and different things that we will need to do. So there’s a lot going to be a lot of heavy lifting. We’re going to start with English. We’re going to start with a few core programs. We’re going to then build out to other languages that are commonly used in the UK. And then we’re going to go beyond there. And of course, as you know, it will also be limited in the beginning by the availability of practitioners who we can engage with, who can do consistent things like filming and evidence-based practice in terms of delivering the resources that can be easily used in the app. So there’s a number of things, a number of hurdles that logistically we have to sort out. But as you know, I like a challenge.

Robin Daly
yes you do like it so obviously a brilliant plan and I wish you the best with it because it’s sorely needed and the way you describe it as where you’re heading will be an incredibly useful thing. Do you want to give us a sort of little feel for your impression of what it’ll be like for a user to actually open this up in the morning and what you know what’s it going to counter.

Dr Nina Fuller-Shavel
So for example, let’s just pick someone who maybe is going on immunotherapy and so you’ve decided that you want to improve your gut health. So you would open the app and you will be saying day two, for example, of your gut microbiome program and you’ll get a little video from a professional talking a little bit about some of the background about what you could do to improve your gut microbiome. And then they will give you the action for the day. So for example, today you’ll be told to go off and look in your spice cupboard and see what kind of herbs and spices you can dig up. And then you’ll be maybe given a recipe to cook with it or to consider cooking with and some options. If you don’t like that recipe, there’s other things that you could do. And then when you’ve completed the action, you can click complete. And if you wanted to, you can also look in and say, okay, well, I’ve been using my Fitbit. Now, how am I doing on all of those steps? Is that helping? I mean, am I doing okay? Or you might have been engaging with a mindfulness app and then suddenly you see your resting heart rate is improving and your heart rate variability is improving. You’re going, ah, there might be something to this whole mindfulness thing. So it helps you see the direct impact of your actions on your physiology, which is really, really important. But also it gives you a practical tool that day. This is my commitment, one commitment for the day. This is what I can do to improve my health. And then you get on with your day and do what you need to do.

Robin Daly
so these different sources of information of data are all being brought into the one place and so you have a dashboard yeah that’s important that because in a way you can end up with you know reams of apps and you don’t really use any of them and that sort of thing so actually to have one that’s kind of you know the bus and is picking up data from your Fitbit or whatever it is is much more useful really

Dr Nina Fuller-Shavel
And also you might have other things come up. So the other features of the app that we will have are more practical things like they might have an appointment coming up. So you’d get a calendar reminder for your next oncology appointment. You can make notes for that appointment. If you wanted to ask your oncologist something, you can make a note on which medications you need to take and the app will monitor and remind you to take your medication on time or whatever you’re doing. So depending on where you’re at with things, it will have different features. And you can also keep a contact book. So another example of how you might engage with the app would be you are measuring your temperature because you are, say, wearing a ring that measures your temperature. The ring notes that over the last 24 hours, your temperature has gone up by more than one and a half degrees. So it exceeds the special threshold, in which case the app talks to you and says your temperature has gone up too quickly. You need to go and bring your healthcare professional, as we know, certainly during chemotherapy, we need to be very vigilant on any temperature rises. So it will tell you you need to go and bring your team. And then if you’ve put in the information into the app, like your nurse specialist, you can go and bring that or chemo helpline and get some help with that. So there is the program engagement. There’s your own self-monitoring of your physiological parameters that can help you get some alerts if something is going wrong or what’s going right. You know, you’ve seen improvements. And also the kind of practical side of having, this is my symptom management checklist, this is my contacts, this is my appointments, this is my medication. So we kind of aim into combines all the useful features without aiming to be everything to everybody, trying to combine the key useful features.

Robin Daly
and you’ve got to strike a balance there because there’s so much you could do of course. So you’ve got these automatic data coming in if you’ve got you’re wearing the right bit of kit but also some of the data you’re going to put in yourself because it’s going to ask you about a symptom you’re experiencing and you know how the experience of it is where it’s getting better or worse. So this is something that if you put it in each day it’s tracking what’s happening and you can actually see how that relates to what you’re doing about that symptom. Absolutely.

Dr Nina Fuller-Shavel
I mean, we’re trying, we are going to try and minimize what we call participant burden. So trying not to do too many surveys at once. So daily monitoring is quite often too much for people. So we would tend to do it more on a kind of a weekly basis or at the beginning and the end of a program, because of course we want to see whether there’s been any changes. And because also people are having a lot in their mind, you know, they don’t always want to be thinking and rating their symptoms every single day. People suddenly have the option to do so, but usually the app will ask them to do it at a reasonable, clinically reasonable interval effectively. You know, maybe your fatigue might not change from day one to day two, but it might change from day one to day 14, for example, if you’ve actually been working on improving your sleep and moving more. So we are kind of trying to minimize the burden while maximizing the data.

Robin Daly
So, do you tell it what your aims are? Does it ask you what your actual clinical aims are to improve the symptom or to get better sleep or whatever? You know, do you go through a sort of initial set up, so to speak?

Dr Nina Fuller-Shavel
Yeah, you do. And at the moment, again, it’s in a symphony because of the amount of background personalization that’s needed. So at the beginning, it will ask you what you want at the moment, it will ask you what you want to focus on, whether it’s sort of nutrition or sleep or other bits and pieces. But in the future, it will ask you what kind of symptom might you be working on, or give you the option to input your own goal, and then trying to link that up to the programs available. So there’s a featured component of the app that will highlight the programs that are most appropriate for what you’ve highlighted, but you can choose as well. So you might choose a program that’s completely not related to what you’ve put down if you wanted to, because the choice is yours. But the featured bit will highlight the things. If it’s fatigue, it will highlight the programs appropriate for fatigue, for example. If it’s joint pain, it will highlight the joint pain information up front. So yes, there will be a personalization element built into it. And ultimately, your goals will also change. So you will be able to go back and re-rate your goals and start a new program and a new path, effectively.

Robin Daly
So in a way, it’s an initiative that the people who use it, they join it and the more they use it, the more that you will be able to develop it and the more it will be able to do for everybody. So it’s a kind of public effort in a certain kind of way.

Dr Nina Fuller-Shavel
Absolutely. It’s effectively crowdfunding the research or crowd researching what’s working and what’s not. And you know, this is what’s so important because we want everybody to feel a part of this. This isn’t, you know, coming from on high saying you should do X, Y and Z. It’s you saying actually, you know, this could be improved. I’d like a new program that you haven’t even thought about or that program was really hard. Can you make a version one that’s a little bit easier of that? And then maybe that could be a step up or that didn’t provide me with enough information. I want more so that we have to strike a balance. We’re never going to please everybody. We also have to be realistic about that, but we want to do our very best to give the community what it needs in a very easy, actionable way that delivers clinical results. And that’s really the aim of the app is to provide an integrative oncology resource in action.

Robin Daly
Interesting. So it’s a completely different angle in a way to a lot of the way that we’re thinking about integrative oncology is all to do with people all the time, trying to get people to be interested in it and all the rest of it. And of course, the public is interested anyway and a lot more could be as well. But an app, if you like, it’s outside of the normal sphere of thinking is it can change things but from a technology point of view rather than the people point of view. And yeah, it just provides a lot of opportunities for people who might not encounter this stuff to come across it in a completely new way.

Dr Nina Fuller-Shavel
Exactly. And it’s ultimately also gives people the empowerment tool for themselves and gives the clinician empowerment tool to say, yes, I can do something, I don’t have to be limited by time and resources because someone else has thought through that. And they’ve put in the time and resources to develop this. And I know I can trust and I can recommend it. And I think that’s important for us to it’s, it’s almost like a vehicle for everybody sort of to come together, both the the person affected by cancer and the professional to come together and interact with this and help us develop it and help it make the best resource out there really from this perspective. And there is nothing like this I know out there that provides us a number of different cancer apps that are focused on symptom tracking or monitoring your medication or keeping track of your appointments. And kind of a little bit of symptom management and a little bit of information, but there’s actually not a lot of understanding of behavioral science and how we change behaviors and how much we need support and guidance and, and practical tools to be able to engage with that properly. And that’s what we’re aiming to do. We’re aiming to use that science to help people make the changes they need.

Robin Daly
Well it is pretty ambitious compared to some of the other apps you’ve just described, isn’t it really? You’re taking on something which is unlimited in scope and you just try to prioritise which things to do first really. Very true. I mean integrative medicine is like that anyway, it has so many facets to it and there’s so much on offer to people that you’re not going to run out of things to do any time soon.

Dr Nina Fuller-Shavel
Nope. We’ve described it in a team meeting the other day as an octopus, a family of octopuses. So it’s already a family of octopuses. I don’t know what’s going to become afterwards.

Robin Daly
No, no. But anyway, I’m sure that the biggest challenge will be deciding which bits are the most important to do. And because there’s no shortage of things to provide information on, but prioritising is absolute necessity, obviously.

Dr Nina Fuller-Shavel
Yeah. And I think it’s where we get the community to help us with that. The community then, the surveys will decide what it needs and we’ll go from there.

Robin Daly
Very good. So people who are listening who are interested and are waiting, you know, anxiously for the launch, is there somewhere where they can keep in touch with what’s happening?

Dr Nina Fuller-Shavel
Yes, absolutely. So if they look at onkyo.org, that’s our website currently, it’s just going to have a placeholder on it, but you will also find us on social media. So from Saturday, World Cancer Day, we will have social media channels for onkyo. So if you look us up on any social media channels, you should be able to find us. And if you can’t, then go on to onkyo.org and email us for the hello at email and then we’ll be able to point you in the right direction.

Robin Daly
very good all right well thank you very much indeed for coming on tell us about it we shall keep a track on what’s happening be very interested and of course yes yes to life will be very pleased to recommend it and make sure everybody knows about it

Dr Nina Fuller-Shavel
Fantastic. Well, thank you so much for giving me an opportunity to talk about and we really hope that everybody who’s interested in it gets in touch and lets us know what they want to engage with and please do fill out the survey that will be coming out with various social media channels and via newsletters, because it will help us design the app that fits you as a community.

Robin Daly
Brilliant. Thank you, Nina.

Dr Nina Fuller-Shavel
Thank you. Bye, Robin.

Robin Daly
Great initiative by Dr Nina there and as I mentioned we’ll be sharing more about it through our Yes To Life channels. I’d like to take a minute now to tell you about events we have planned for this year. We have a theme running through two events, a summer online conference which is on the 17th June and our annual in-person conference on the 7th of October in London. The umbrella title for both events is you and your cancer team, building and working with your integrative cancer care team. The aim is for both events to be highly practical delivering lots of take-home information and experience to support you in finding the best way forward for you. As ever we have a stunning lineup of top experts to guide you including Kirsten Chick, Sophie True, Dr Katherine Zollman, Patricia Peat, Arga Kehinde and many more. You can find out more on the dedicated website which is at yes to life annual conference dot org, yes to life annual conference dot org and also register for either or both events. There’s a bundle price for registering for both at once. I hope you can join me at these great events and also next week when I’ll be hosting another yes to life show.