Patient Experience Focus Group – let’s change the conversation about cancer

Patient Experience Focus Group – let’s change the conversation about cancer


On the 22nd February 2018 we held our patient experience focus group at the Great John Street Hotel in Manchester. The focus group brought together patients, doctors and industry advocates to discuss the patient experience within the changing landscape of cancer care today. Discussing both the challenges and surfacing actionable solutions, Ashley Davies, Executive Faculty Member, Switched Oncology, reports on the key takeaways from the discussion.


Matt Eagles, Head of Patient Engagement, Havas Lynx (Chair)
Vernon Bainton, Chief Medical Officer, Havas Lynx
Stuart Barber, Policy Advocacy and Government Affairs Manager, BMS
Lorraine Dallas, Director of Information and Support, Roy Castle Lung Cancer Foundation
Diane Cannon, Director, Corporate Partnerships, Melanoma UK
Phil Howells, Creative Director and colon cancer patient
Ben Harman-Jones, Medical Advisor, Havas Lynx
Katie Atkinson, Account Director and cervical cancer patient
Purav Asher, stomach cancer patient
Marje Isabelle, Founder CEO of Fertile Matters

Any of us born after 1960 has a one in two chance of developing cancer. It’s easy to be daunted by cancer’s huge potential to cause harm, especially because of the way we talk and think about it.

Culturally, even the word ‘cancer’ can represent a long treatment process with awful side effects at best, or a death sentence at worst. But, just as a disease evolves over time, so does the way we prevent, diagnose, and treat it. With new treatment approaches, survival and quality of life for cancer patients is improving. The patient experience is changing, so is the way we talk about cancer and our expectations of it.

This changing conversation was explored at a recent focus group organised by Havas Lynx as part of their Switched Oncology initiative. The event invited doctors, patients and industry advocates to put forward their thoughts on cancer. They discussed the problems with the past and present issues cancer patients face, as well as how that conversation can and should change in the future.

Cancer identity is changing 
Cancer has typically been defined and diagnosed by the place it originates in the body, eg lung cancer. Patients can experience different emotional reactions to diagnosis and treatment depending on where their cancer is based in their body – your type of cancer forms part of your medical identity.

The focus group discussed whether patients could be treated and supported in a more standardised pathway irrespective of cancer location, to better improve access to holistic care. As Lorraine Dallas, Director of Information and Support at the Roy Castle Lung Cancer Foundation, pointed out, “there is no right way to cope”.

The group also discussed the role that genetic profiling could have in screening for and preventing cancer in high-risk individuals. We are currently in the era of precision medicine with genetic typing of cancers and key biomarkers determining which next-generation treatment will be most effective. In the future we may move towards truly personalised cancer based on even more accurate holistic diagnostics for patients – my cancer is my own. However, are the health systems ready and set up for this?

Dr Ben Harman-Jones, a Medical Advisor at Havas Lynx, asserted that this is a “more nuanced and sophisticated approach” compared to the historical attitude.

Our cancer communication needs updating 
Dr Vernon Bainton, Chief Medical Officer at Havas Lynx, explained that our current approach to talking about cancer is no longer fit for purpose.

The group discussed the current reality of cancer conversations; that healthcare professionals (HCPs) often talk in a language that patients can’t always understand. The group recognised that this is only going to get more complex as we see more treatments become available, encouraging the need for new conversations. The treatment journey will be very different to what patients may expect, and someone will need to address this. Instead, HCP-patient conversations could become more personalised, in keeping with the way cancer identity is changing.

Developments in cancer treatment are also revolutionising the way we act and think about cancer. The group discussed the impact of recent developments in cancer therapies, such as immuno-oncology (IO). IO represents a sea-change in the way the medical and patient community talk about cancer – instead of ‘fighting a battle’ against the cancer cells, patients’ own immune systems are harnessed and encouraged to circumvent the cancer from within. As Stuart Barber, Policy Advocacy & Government Affairs Manager at BMS, explained, “we are dealing with far longer survival than ever before, which brings challenges with long-term management and side effects”. Treatments like IO mean that cancer may become more like a chronic disease – something that patients live with and manage.

The future for cancer is promising 
Switched Oncology is looking to help both patients and HCPs change the way they talk about cancer. A new approach to communication, reflective of the cultural and medical changes in oncology, means that we could have a real chance of democratising hope for future cancer patients.