A conversation with Sharon Tate, head of primary care development for Target Ovarian Cancer in the UK.
Golda Arthur
Tell me briefly what the role of being head of primary care development actually entails and the work that you do.
Sharon Tate
The role is to oversee all of the work that we do as an organization with primary care in the NHS system. We're a team of three, and I'm responsible for leading the direction of our work. Obviously, with a lot of input and insight from my colleagues, and making sure that we stay on track so that we can fulfill our aims as an organization, particularly in the context of early diagnosis.
Golda Arthur
Okay, so that's great. Let's talk about early diagnosis a little bit here because as we know, that is a huge challenge in ovarian cancer, especially, where symptoms are so vague, so dangerously vague, and especially where there is no screening tool and probably no hope of a screening tool for a while yet. And in that case, does that mean that primary care providers or GPS, become kind of your first line of defense and what's the work that needs to be done there?
Sharon Tate
Yeah, you're right. I mean, I guess there's two lines of first defense and that is public knowledge of ovarian cancer. Because obviously, if women aren't aware of the symptoms, they aren't aware of the seriousness of the symptoms and potentially what they could be they won't go to the doctor. But of course, once we get women going into their doctors and reporting symptoms, regardless of whether the women have knowledge or not, then absolutely GPs are our first line of defense. And we know that they play such an important role in outcomes for women who have an ovarian cancer diagnosis. So when we look at data in England, and we look at the route a patient takes to diagnosis, we would look at things like whether they were referred via a GP and there's a number of ways they can be referred, or whether they presented in an emergency setting. We know that women who are referred into the hospital by their GP have better long term outcomes than those that present in an emergency situation. Regardless of whether the cancer is at an early stage or advanced, women have better outcomes if they are referred by their GP. So it's a really important role, and that's what we want. We want all women being referred by their primary care professional into secondary care for investigations for ovarian cancer.
Golda Arthur
What needs to change about that visit to the GP’s office?
Sharon Tate
There's a number of things that need to change, really, I mean, first and foremost, we need GPs to be really knowledgeable of the symptoms of ovarian cancer. Because during their medical school training and GP specialist training, they don't tend to receive any formal education on ovarian cancer. Some receive some, but it's very ad hoc, depending on the experience I've had, depending on the hospital placements, depending on any additional learning that they've done themselves, but there's no formal training on ovarian cancer. So it's a big gap that charities like us try to fill so that we know GPs have the knowledge of symptoms. So that's the first part and the second part is they also need to be aware of the appropriate diagnostic tests and how to use them and how to interpret them. And we need the system in place to support those cheap GPs to enable them to do that because there's no point in having really knowledgeable GPs if then the system is falling down around their ears and they can't make the referrals or they can’t order their blood tests, which we know historically; we have seen some of those problems in the United Kingdom.
Golda Arthur
What do you hear from GPs when they hear you're trying to solve this problem?
Sharon Tate
Yeah, I mean, it's a very different perspective for a GP compared to a gynecological oncology specialist. Because what we have to think about is when a woman walks into the office and she talks about symptoms, there's a whole range of possible diagnoses that could be attributed to those symptoms. And it's the GPs job to basically solve that puzzle to try and find the most appropriate route to go down. And the truth is the majority of people who come in presenting with the symptoms will not have cancer, they won't have ovarian cancer. So you're asking a GP to be alert to this really quite, in their context, unusual diagnosis, something that they may only see once or twice or not even at all in their career, and prioritize that in their thinking. Often on the basis of not much information. So it's really challenging, but what we do know is that GPs do not want to miss a diagnosis of cancer or ovarian cancer. And when that does happen when a patient has a bad experience it’s really devastating for that healthcare professional, and often what it does is it leaves them with quite a mark, I guess, on their conscience and it certainly makes them aware for the future. In the 15 years that I've been working in this organization, and we've been doing work with GPs, what we've found is a real shift in terms of their attitude. So when we started this work, we went to a conference and we had a stand. We had information people would give us quite a wide berth. Oh, what's the point? It's a silent killer. There's nothing we can do in primary care about that. Nowadays, it's very different. People come up to us: ‘oh, my goodness, this is the one that really keeps me awake at night. I'm really worried about this. What can I do? What can you tell me?’ How can you help me? So I think that within the context of a very busy practice, of really a huge range of medical conditions that a GP has to be knowledgeable of, it is a concern to them. I guess there's an element of prioritization sometimes where do you fit this into your professional development when you're being inundated with other more common conditions, but I would say an attitude shift and also towards gaining that information and attitude shift to knowing that they do have a role to play in diagnosis of ovarian cancer and that they are motivated to do better for women is all part of the picture. That doesn't stop it from being really challenging, though, from their perspective.
Golda Arthur
That's really interesting to hear. And I can just imagine the challenge. Let's move on to the other side of the work you do, which is sort of shoring up the system around GPs. If you could like briefly give me an overview of what that entails.
Sharon Tate
So one of the big challenges that we know we face in the United Kingdom, but we'll specifically talk about England now because that's why we have the strongest data is that we know this quite significant variation in terms of early diagnosis depending upon where you live. So in some regions of England, around 22% of women are diagnosed at an early stage, so stage one or two disease, but in other regions of England that is up to 68%. So that is a huge gap. And, you know, ultimately, we are all people functioning in the same biological systems. So what are the reasons underpinning those differences? So we started a project to try and look at that. And to see if we could establish some mechanisms by which we could support the system, because as I said earlier, there's no point in having these really educated GPs if the system around them is inadequate. So the broken down barriers project was designed to address that. So what we do is we work collaboratively, typically with colleagues who are in the NHS, and they come from a range of backgrounds, they could be GPs, they could be commissioners, they could be so as improvements leads, and we have developed a series of projects that we've rolled out and tested in their locality that we believe will support early diagnosis of ovarian cancer. Now, I think one of the problems that we face is that the NHS is a really fragmented system. So GPs surgeries, for example, operate almost like mini businesses. They are led by their own practitioners, GP record systems, hospital record systems don't speak to each other, and different hospitals have different ways of referring and managing patients. So it's really fragmented. So, one of the issues is you can run a really successful project and see really positive outcomes in one area. But that won't necessarily always translate to somewhere else. So, it's a process and it's a process that we're trying to build upon, build upon our initial work, look for more funding so that we can continue this work and start to address this on a bigger scale really, amplify what we've already started.
Golda Arthur
So what has been the learning so far with this work? And I understand that I'm asking you to take a great volume of information and distill it a little bit here. But if you had to kind of pull back and just tell me a little bit more about what some of the more you know, what are the learnings that really stand out in doing this work?
Sharon Tate
I think one of the things that we're really beginning to understand now is the concept of what we would refer to as a safety net within the system. Now it's something we've been aware of for a long time. But the more you learn about the system, from the point that was presented to the GP for the first time to the point of receiving that diagnosis, there are lots of opportunities along the way to really lose women from the system. And through no fault necessarily of the individual or the GP, but just the way the system is working in this design. So what we're trying to do with our interventions is plug some of those gaps. So for example, by using electronic tools that work with the GP system so that it flags patients if there's a concern about symptoms or that they can then set mechanisms in place to follow those patients up. So just say the patient had normal test results, but they still had ongoing symptoms, ways to bring those patients back into the practice for future review in a more timely manner. So I would say that is our biggest learning at the moment that we have to look at it as a sort of continuum and think about where the opportunities are for us to plug some of the gaps. We do know there's an issue with data as well. So for example, the way coding would call the coding on the GPs system. So what happens is there are a set of predefined codes. GPs can use to put in a diagnosis into their patient record, but there's no standardized process; people might use different terms, people might use different codes. And so then it becomes really difficult to follow your patients and to audit what is happening in general practice to really get a clearer picture of where failures might be happening or where services and systems can be improved. So data is a big part of it. But that kind of feeds back into safety netting. And also one of the things we don't really understand are some of those bigger questions around the drivers of the variation in the first place. Whether that has to do and we just don't really know whether it has to do with the like age profile of the patients in an area or a predominance of an ethnicity because we know that in some cultural groups there are myths and concerns about cancer and it doesn't get talked about and people don't present to the GP but I think what we're going to find is it's a combination of all of those things. It's not going to be one thing. We need to kind of take a multi pronged approach whatever we do to address this and improve early diagnosis. But yeah, I'd say if I had to distill it down, I'd use this broad term of safety net.