A holistic approach to cancer research: bringing future research leaders together with patient advocates

It’s vital that the patient voice is represented in the research we fund at Cancer Grand Challenges so that discoveries can be translated into tangible impact for people affected by cancer. We’re working closely with patient advocates to achieve this. 

For this year’s Cancer Grand Challenges Future Leaders Conference, Patrick McGuire and Gita Patel (members of the Cancer Grand Challenges Advocacy Panel) and Abbe Pannucci (NexTGen team patient advocate) worked with Dr Hanifa Koguna (postdoctoral researcher in the Rosetta team and junior neurosurgeon) and Dr Michael Olanipekun (postdoctoral researcher in the PROMINENT team) to co-develop a session focused on incorporating the patient voice into research.

Chaired by Hanifa, the session saw Patrick, Gita and Abbe share their experiences with cancer and Michael share his experiences of how researchers engage with patient advocates in the PROMINENT team.

We spoke to Hanifa, Michael, Patrick, Gita and Abbe to find out more about the session and the importance of bringing future research leaders together with patient advocates. 

Michael: The main aims were to present patient advocates in a very holistic sense. We wanted to show that patient advocates are important members of the Cancer Grand Challenges teams, and why researchers should develop their research plans with patients in mind, because it's not possible without them and it's for them. 

Hanifa: My perspective in developing the session was for us to have a holistic approach towards research - meeting the person first and empathising with all aspects of their lives before we see them as patients and use samples for our research. We also wanted the session to fill our blind spots as researchers and to foster more of a collaborative approach to research with mutual benefits. 

We developed the session discussion points together, and having three different advocates as part of the session was wonderful because everybody has a unique perspective. Without the input of Gita, Abbe and Patrick, we would have missed important aspects of the patient experience.

Gita: The impact of having advocates at events with future leaders is for both groups to listen, talk and learn from each other. The advocacy stories we shared will have, hopefully, inspired the researchers to continue with their ground-breaking research towards kinder and more effective treatments, knowing it will make a difference for patients.

Patrick: Based on feedback from a number of future leaders I spoke with, the impact is significant. It is a fundamental reminder of the core purpose of their work: improving cancer outcomes for patients and their families. Many spoke of their lack of awareness and understanding of how to bring patient advocacy into their work. It is crucial that they have opportunities to explore why patient advocates get involved, the roles they have and the value they can add to research.

Michael: As a researcher, I think sometimes you get lost in the numbers. You get lost in trying to deliver certain things that you forget that this is about people at the end of the day, and not only is it about them, but it's also enabled by them. For me, something that stood out was Patrick talking about all the fundraising he's part of and how his experiences have influenced what he’s dedicated his life to.

Having that as a reminder from this session I think has a big impact for scientists and future leaders. 

Abbe: Patient advocates must come together with early career researchers to provide patient-focused feedback on their work and to inspire them to include advocacy/the patient voice throughout the rest of their career. If advocates can work with researchers in the early stages of their careers, there's a great chance that this relationship will develop over time and influence the metrics by which successful science is measured.

Michael: I think it works in two ways. This is good for us as future leaders because I think there's a big importance on being able to communicate your science effectively and in plain language, and I think that is necessary and a skill we can build upon when communicating with patient advocates.

It's also useful because patient advocates are essential to all of this. If you have that at the forefront of your mind at this stage, then going forwards when you’re running your own lab then it will still be a priority. Hopefully it won't be that you get bogged down with just publishing papers, but you will be thinking about the impact of your work and how you can potentially change someone's life.

Hanifa: The mutual collaboration between researchers and patient advocates can broaden the research avenues that you can pursue. A lot of areas in patients’ lives or in carers’ lives aren't really given much attention in the research world. So having that broadened horizon to pursue different aspects of research I think is very beneficial at an early stage.

I think it’s also important to see that patient advocates are accessible at this stage of our career, you don't have to be a principal investigator to engage, you can engage at any stage. This also has benefits outside of doing the research itself, such as for research communication and grant writing.

Abbe: As a relatively new patient advocate and an early career researcher myself, I took away a lot of important lessons from the two other advocates on the panel, Patrick and Gita. They both had a profound and positive impact on how I view the importance of advocacy and have influenced my strategies for communicating my own patient perspective going forward. I hope to be able to work with them again in the future.

Gita: I saw that researchers want to but are unsure of how to involve and engage with advocates. I hope the event has provided an avenue for the researchers to access the patient advocates within their Cancer Grand Challenges teams (and vice versa). I was also amazed at the type, volume and value of the work the researchers are doing.

Patrick: I left feeling additionally inspired and motivated to keep volunteering and fundraising after meeting the future leaders and hearing about the quality of their world-class, life-saving research. Their passion, dedication and commitment are hugely impressive. The future of cancer research is, indeed, in very good hands. 

The conference has also provided me with a range of possible developments the Cancer Grand Challenges Advocacy Panel could pursue to improve patient advocacy across the programme.

Hanifa: Even though I have this holistic approach in the back of my mind, this experience has reiterated to bring it to the front of my mind while conducting research and has given me a better understanding of the roles of the patient advocates and how accessible they are. 

Engaging with people affected by cancer and ensuring we take their opinions and experiences into account will result in holistic research and ultimately a more positive impact on people, on communities and on society.

The Future Leaders Conference is generously supported by Bjorn and Inger Saven.

Find out more about patient advocacy within Cancer Grand Challenges. 

Find out more about our Future Leaders Programme.