Using real world data to provide aftercare plans

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Published: 8 May 2019
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Dr Anna Barker - Arizona State University, Tempe, USA

Dr Anna Barker speaks to ecancer at ONS 2019 about the current state and future of cancer science.

She explains that real world data and evidence from patients both undergoing treatment and post-treatment is important to not only provide better care during treatment, but to also create an aftercare plan that will help patients with resulting changes to their health.

Dr Barker says that oncology nurses are so important to this as they are involved at every stage of a patient's care, and are at the forefront of providing aftercare.

This morning actually I spoke about the state of cancer science today in terms of the understanding that we have of the molecular basis of cancer. But I actually focussed on the way forward which essentially is beginning to now deal with the whole patient in terms of cancer, what we call the phenotype as opposed to just the genotype, and the importance of real world data from real world people that have cancer and the real world evidence that will come from that. It’s a new day in terms of us, us meaning the entire cancer community, beginning to realise the impact of including real world data in the way we develop drugs, in the way we reduce toxicities but, most importantly, how we design survivorship post-cancer treatment. That’s where ONS comes in and a lot of what oncology nursing overall is doing along the research to care continuum. So a pretty extensive presentation of a lot of data and a lot of information that will hopefully help us all to do a better job of collecting real world data.

What kinds of treatments were highlighted in the discussion?

The thing that most people are talking about, actually two things now, one is targeted cancer treatment which essentially is understanding about the molecular basis of the cancer and doing an assessment of a patient that identifies what are the mutations within that cancer, the changes in the genome, the genetic make-up of the individual, that allow us to target that cancer. So that’s one approach to therapy that we discussed this morning. The second is immunotherapy which essentially is not so new but new in the sense that it’s really having some success and involves ways to manipulate the immune response to recognise the cancer. The problem is that we don’t know how to really identify those patients yet who are going to respond.
The interesting thing, though, about our discussion this morning was that what I wanted to bring to the Oncology Nursing Society and to the whole care community is that we are now going to use real world data and real world evidence from patients both undergoing treatment and in post-treatment to actually do, one, a better job of treating them in the first place – more targeting, more specifics to their cancer – but equally important is creating an aftercare plan after you’re done with your therapy to deal with many of the issues that cancer patients face, including toxicities and second and third cancers that many will get, comorbidities, other changes in your system as a consequence of the therapy that have to be dealt with, so a lot of cardiac problems, those kinds of problems. So it’s a continuum that starts with diagnosis and goes all the way through end of life. Unfortunately too often we stop when the therapy is over and what we talked about this morning is how the rest of that journey could inform therapy and actually improve the lives of cancer patients.

How has this research been conducted?

A lot of the research that’s ongoing in cancer treatment has, to this point in time, been conducted in universities and laboratories and foundations etc. It has been mostly basic and translational research; translational means that we take discoveries, move them as quickly as possible into the clinic. Most of that research to this point has been done in the clinic under something called a randomised controlled trial and randomised controlled trials are the gold standard of clinical research. The problem with these trials is that they are very regimented, limited numbers of patients can enrol in these trials. Only about 3% of cancer patients actually enrol in clinical trials and most of those patients are in our centres, our academic centres, whereas 80% of our patients are treated in the community setting. So what we talked about this morning is how real world data and real world evidence will start to inform the development of drugs so we have better drugs, better agents and also better ideas about how to take care of patients after they are done with treatment. That’s where oncology nurses especially have a big role to play.

Why is the role of oncology nurses so important?

It’s very interesting, the care continuum begins with diagnosis where oncology nurses are involved, it moves to a selection of treatment and administration of treatment and oncology nurses are involved in every stage of that process. What a lot of people don’t think about is once the treatment is over who takes care of patients after that? Who plans for what’s going to happen to them? Who actually develops their plan with them in terms of how they’re going to cope in the future with a number of issues, especially toxicities. Oncology nurses actually are at the forefront of that, they are the group that is actually taking on the creation of care plans and the creation of after-treatment planning with patients which is doing a lot in terms of helping us to understand what these patients need and how they are going to respond to the kinds of treatment that they’re going to have to have post-treatment for their cancer.

Why are meetings like this so important?

One of the things that actually happens in science is that we have meetings, it seems like perpetually we have meetings, to share information about specific areas of science. Whether it’s in areas that I care about or not, I got to a lot of those meetings as well as meetings, specialty meetings, that are in my area of science. Meetings that actually bring people together is a way to build knowledge and the Oncology Nursing Society Congress that’s going on here now is one of those vehicles where we can build knowledge. I predict that meetings like this for the future will be one of the primary ways that we do build knowledge. Information gets transferred, people learn, they take it back and they implement it in their respective day jobs and in terms of oncology nursing it means everything to how we will change the care continuum for every single patient. So meetings like this everybody learns a lot and takes it back and the idea is to make the lives of patients better and the building of knowledge is going to be part of that.

What is your take home message for oncology nurses?

I had a lot of questions at my session and we talked about a lot of things today. I talked about how we got to our current state of cancer research and cancer care and then I talked about the future of what I thought it was going to be. I’m pretty sure that people understood that oncology nurses are going to be central to the future of cancer research. We’re going to have to work together with people in the care community, this is the research community and the care community are going to have to work together very closely. We can’t make much progress without oncology nurses collecting the real world data and the real world evidence it’s going to take us to build the drugs and the interventions of the future. So my takeaway from my session was that people got that, they understand and they’re ready to go to work to actually build the databases and start to ask the questions that will change the world.

Do you have anything to add?

No, I just thought that, as I have always known, oncology nurses are amongst the most educated and smartest of the oncology community because they see this disease every single day and understand what it is from the patient’s perspective, which is what this is all about.