Genomic testing: Awareness and effective communication between healthcare professionals and patients

Prof Richard Simcock – University Hospitals Sussex NHS Foundation Trust, Brighton, UK

Ms Antonella Cardone – Cancer Patients Europe, Tuscany, Italy

RS: Hello and welcome to this ecancer session on precision and personalised medicine, particularly in an era of genomics. We’re here at ESMO Madrid. My name is Professor Richard Simcock, I’m a consultant clinical oncologist treating breast cancer in the UK and also Chief Medical Officer for Macmillan Cancer Support, a large cancer support charity based in the UK. I’m going to be having a conversation with Antonella Cardone from Cancer Patients Europe. Antonella.

AC: Thank you Richard. I’m Antonella Cardone, I’m the CEO of Cancer Patients Europe. Cancer Patients Europe is a pan-European, all cancer types association. We are based in Brussels and currently we have 38 members from 19 countries across Europe. We work a lot on policy and advocacy for cancer patients. 

RS: Very good. I think we’re both in this conversation wanting to highlight the patient centricity of these data. We’ve both just come from a conference that has 30,000 delegates looking at some of the major advances in precision medicine. I was interested to see that precision medicine was mentioned in PubMed last time over 12,000 times, everybody is talking about it. But sometimes in that discussion, I saw just yesterday in a slide, the words precision medicine being confused with personalised medicine. I think you and I would both define that very differently. From my perspective, precision medicine is about using genomic or molecular information to find a target that is very specific to that person’s tumour. It’s an information which helps us drive a treatment. I feel very strongly that it is absolutely not personalised medicine which is a term that has been around since the 1920s which is about doing the thing that is right for that person, putting that person with the cancer in the context of their disease and their social situation, the things that are important to them. I usually define that by saying that precision medicine is what is the matter with the patient and personalised medicine is what matters to that patient. I think those two things get confused – would that be your sense of things?

AC: Oh yes, definitely. So the definition of precision and personalised medicine are confused, mixed up very often. Not only that, there is also the use of genomic and genetic tests that gets confused, not only among the general population but very often even among the healthcare provider community and, of course, among patients. 

RS: So that leads us very nicely to the poster that you’ve shown here, the work of Cancer Patients Europe trying to test that understanding of patients about the landscape of genetics and genomics in cancer. So can you tell us a little bit about the poster that you’ve shown.

AC: So at Cancer Patients Europe we believe that genomic testing and precision medicine, together with personalised medicine, are key in this moment in time. So we have established an initiative called My Cancer My Concern and within this initiative we are looking at the importance of genomic testing for cancer patients. We started with a case study on breast cancer, so we developed a survey because we wanted to understand what is the level of uptake and understanding of genomic testing, specifically in breast cancer. So we developed a survey in five European countries – the UK, Spain, France, Italy and Germany. We put forward the survey last September and October and in about six weeks we received more than 1,300 answers, essentially from these countries. We analysed some interesting data. What is really striking to us, and beyond what we could expect, is that four out of five women eligible for breast cancer genomic testing were not told by their oncologist that genomic testing was an option. This is in five countries where genomic testing is available and reimbursed.

RS: So that’s a really very striking finding about the uptake, that only I think it was 21% would or had genomic testing. I spoke to some people about that data, they felt that maybe genomic testing was happening and the patients didn’t know that, but that’s still an extraordinary number. What has led to that lack of uptake?

AC: This is the lack of uptake on the side of the oncologists. It’s maybe a lack of empowerment in knowing how to use genomic testing and how important it is. There might be still some ambiguities in the guidelines that need to be fixed or maybe we need to work with ESMO as well on updating the guidelines. Definitely there was not good communication between the patient and the oncologist as also the patients have a role to play when it comes to shared decision making. 

RS: So being their own advocate in that situation?

AC: Yes.

RS: So with respect to the uptake, a very clear message there that healthcare professionals need to understand the data, we may have more work to do in terms of education and guidance. You talked about uptake but you also talked about understanding. What did the data show you about people affected by cancer’s understanding of genomics and genetics in cancer?

AC: There is very, very limited understanding. The majority of the respondents answered that they did not know the difference between genomic and genetic testing. They did not know what precision or personalised medicine was. So there is huge, huge, huge work that needs to be done with cancer patients and not only.

RS: The thing that struck me was not only was there a high level of an acknowledged lack of knowledge but there was also a very strong desire for that knowledge. Over 80% of patients said they wanted more information and that’s remarkably consistent across the literature. We’ve seen work published before – Professor Dame Lesley Fallowfield published many years ago that 86% of cancer patients want information, good or bad. Your data hit that same sort of level of mark so we can’t say that the patients don’t want this information, the desire was very clearly there. 

AC: Yes, the desire is there and also another very relevant data is that more than 80% of the patients would like to receive this information from their oncologist.

RS: So where were they getting their information from? You looked at that, didn’t you?

AC: Yes, we looked at that and they were hoping to get that information from the oncologist but then they were looking online for this information. We know how dangerous it is to look for medical information online, especially when you do not have a medical background.

RS: I feel in my practice, and reading your data, a message for me was that we have a role as clinicians to help navigate people towards appropriate data. One really important part of shared decision making is giving the information that’s appropriate for that person because not every information source will be right for everyone. I think 70% of the healthcare professionals were not signposting people affected by cancer to information sources. So it seems to me that part of the education for healthcare professionals is to say, ‘The people you serve need more information and you can have a role in signposting them to that.’ Do you think there is a role for patient organisations in providing that information for healthcare professionals?

AC: Yes, definitely, although there is a need to start with developing trust between the healthcare providers, the oncologists and the patients. The trust can be developed essentially based on empowering the patients. So, first of all, the patients need to be more self-confident and know more about what they would like to discuss with the oncologist.

RS: So in terms of that empowerment I was very pleased, thank you very much for inviting me to the meeting just before ESMO started with delegates, patient users from all over Europe, to start to work towards that empowerment. Do you want to tell us about the meeting we had?

AC: We had a very interesting meeting with about 25 participants from all over Europe; actually we also had a participant from the US. We discussed about the importance of precision and personalised medicine and then about shared decision making.

RS: For me it was very interesting when we had that mix of healthcare professionals and patients in the room, we were working together and what struck me was the patients said that the healthcare professionals needed more education and the healthcare professionals said the patients needed more education. What I took away from that was that perhaps we need to work together and co-design in terms of developing information resources. It seems to me a very important step in that trust that you talked about and working towards being able to empower shared decision making for people affected by cancer.

AC: That was the spirit of the session. We put into the same room healthcare providers and patients to work together and see what the priorities are in terms of shared decision making. It came out very clearly that on both sides there is a need for more materials, for instance, more information on the specific topic of genomic testing for breast cancer but, most of all, on how patients and healthcare providers can work together, so can understand each other and can make together the most relevant decisions for the patient.

RS: That’s not to underestimate the challenges of providing, because one size does not fit all. We saw some data that showed there’s a strong preference for some video information around some genomic testing, there’s the language barriers, and the recognition that some patients will want some very basic data and some patients, some of the advocates in your group, want very detailed information about genomics. So that’s going to be a very great challenge for us as we work together, trying to work out what are the best sources of information. We probably need to build libraries, I would think.

AC: Yes, so we will definitely build a library, a sort of repository, but then we also need to provide a baseline or model of what we would expect for a good shared decision making. There is no one size fits all so patients are individuals with different backgrounds, different expectations, different desires for their future. The communication can not be standardised but we can build on a model, on a sort of template, where each component of the discussion can have their own personal inputs.

RS: And that’s a key point about how very different everyone is because it would be a failure to think shared decision making means that both partners have to contribute equally. There are some people who will want their healthcare providers to guide them to the correct decision, other people will want to be more weighted. I remember the quote, again from Professor Dame Lesley Fallowfield, that the desire for information should not be confused for necessarily desire to participate in decision making. Shared decision making is really about understanding what people’s personal preferences are. You’ve had a very strong mandate from the patients in the group and from this very large survey that there’s a need for more information, so I think the mandate there is clear. What would you want to say to me and to other healthcare professionals? What do we need to be doing better?

AC: I think that the most important thing is this trust. So it is very important that the oncologist trusts the patient and that gives the patient the possibility, the choice, to be part of the decision. The patient may not want but the choice should be in the hands of the patient and should be provided by the oncologist.

RS: It feels like it all starts with a good conversation.

AC: Exactly.

RS: And that was a good conversation, so thank you. Thank you for watching that. I hope you found that interesting. In this era of precision medicine, this vast amount of data, we need to help patients navigate that appropriately so that we can feel confident that together we’ve made an appropriately shared decision. Thank you for watching.