In June, 300 melanoma stakeholders will meet to discuss ways to improve patient care – but what marks this ordinary-sounding event out is that 200 attendees have the disease themselves and it is being entirely organised by a single patient
Anyone in our industry who still thinks of 'the patient' as a passive recipient of care should meet melanoma patient and advocate, Imogen Cheese.
Following a diagnosis of stage-two melanoma, the next two years were a 'rollercoaster ride' for mother-of-two Imogen. "After I was diagnosed, I was let down in a number of ways right across the entire process. The melanoma on my back was missed and then I had to battle with my GP and dermatologist to get it removed, and once it was removed I wasn't given the information about what options were available to me. Nobody told me how I could find out about clinical trials, I had to ask the questions rather than the information being voluntarily given. I had to fight to get good care for myself every step of the way."
Early on, she decided to write about her experiences in a blog. "After I started writing Melanoma Rollercoaster, I was overwhelmed by patients from across the UK who wrote to me about similar experiences. The more patients I came across whose care did not match NICE guidelines, the more I realised that I wasn't alone. Worse still, it made me realise that my experiences were not uncommon and that too many melanoma patients were falling through the net."
After being contacted by the Melanoma Patient Network for Europe, Imogen started advocating for patients, sharing her experience and talking to the media about melanoma. It was then that she reached a decision that would change her life. "In two years, I've gone from someone who knew nothing about melanoma to a passionate advocate for patient care. I'm just as passionate about making sure medical professionals get the information they need from patients to ensure they can deliver the best possible care."
For the past year and half, Imogen has been single-handedly organising a first-of-its-kind event, the Melanoma Patient Conference, which will bring together every stakeholder involved in the disease. Of the 350 people who will gather in Bristol on 17 June – including healthcare professionals, patient organisations, pharma companies and members of the media – over two-thirds will be patients.
"When I raised the idea of a patient conference with oncologists, the response was fantastic, because the only events that were taking place were for medical professionals. They were closed doors for patients," she says. "Patients have to be involved in these discussions. It's all well and good for patients to sit back and say that everyone should do everything for them but we need to take a little responsibility for looking after ourselves for our own care."
The aim of the conference is simple – to improve patient care. "Everyone needs something from everyone else. Patients need information, pharma companies need to recruit patients to their clinical trials, oncologists need patients to have a better understanding of their disease, and dermatologist need patients and their families to get more support so they are not spending a disproportionate amount of their time providing psychosocial support to help them deal with the anxiety they naturally feel. There are so many flaws in the current system – the hope is that by connecting people we can help to connect the dots."
In this era of patient-centricity and patient power, it is important to note that this unique event would not be taking place without the hard work and dedication of a single patient.
"When I look back on my own personal experience with melanoma and I see the catalogue of disasters, I'm not filled with anger," says Imogen. "What's the point of my suing the local hospital when that money would be far better served getting an extra dermatologist or oncologist to look after more patients? We're not looking to reprimand hospital Trusts that are not providing the best care, we're not interested in comparing them or naming and shaming them as that wouldn't be constructive. So many things within the system need to be fixed and I just hope the patient conference gets people talking about possible solutions."
Ending the postcode lottery
The care delivered to melanoma patients varies hugely across the UK, says Imogen. "Here in the UK, the system works around specialist centres of excellence and if you're lucky enough to live in the catchment area of one, then your experience is very different from someone at a local hospital. If you're not at a centre of excellence that specialises in melanoma, the oncologists will be generalists and cover all the cancers, so you may not get specific and up-to-date information. Patients are often told that there's no treatment for them but what that means is that there's no treatment for them at that specific Trust. They are not told that treatment might be available somewhere else on a clinical trial. Information is not being passed on in the way it should be and it is completely unacceptable that people have completely different survival outcomes based on where they live."
Sharing information is the number one goal of the patient conference, says Imogen. "What I want to ensure is that all patients diagnosed with melanoma get the same set of instructions, a generic packet of information that tells them what happens when they've been diagnosed and what they need to do and how they can get on to a clinical trial.
"What's more, at the Melanoma Patient Conference, every single patient delegate will get a complete list of the clinical trials for melanoma that are currently recruiting patients, whether stage 1 or stage 4, whether the study is looking at a drug or genetics. The list will cover every relevant trial and we will publish it online afterwards. This kind of information has to be made more widely available because it shouldn't be so hard for patients to find out how to get on to a clinical trial."
The pharma industry has been extremely enthusiastic about the conference, says Imogen. "Information about clinical trials is too complex for patients to understand, especially when you're a novice. When you've just been diagnosed, you are so scared and so uncertain and you don't really know your disease or your staging, and you don't understand what your genetic mutation is. The current information about clinical trials is simply confusing and it means nothing to patients. The list we present at the conference will make it simple, putting trials into simple categories that patients can understand."
Pharma has a major role to play, she says. "Contrary to many perceptions, not all patient advocates believe pharma is the enemy. When you look at how much clinical trials cost, I understand why drugs cost what they do. Plus, it's totally right for pharma to be able to tell patients about clinical trials as well as to offer advice on diet and lifestyle when a patient is taking their drug, because it's in everyone interests for as many patients to get benefit from a drug as possible."
While a range of charities, companies and support organisations are aiding the Melanoma Patient Conference, Imogen is keen for more partners to get involved. "I don't have as much funding as I hoped for so I am adapting to suit the budget. The conference will be an annual event, so I need to ensure every stakeholder views it as a stepping stone to the future. For that to happen, pharma support and sponsorship is extremely important. More than that, having a pharma presence is vital too. I want patients to understand the industry better, to understand how clinical trials work. For example, this year we are running a session where six leading oncologists will discuss clinical trials, even bring along patients who took part in those trials to talk about their experiences. I hope this will give patients an idea of the barriers and challenges that oncologists face within clinical trials."
The Melanoma Patient Conference will take place in Bristol on 17 June 2016. For much more information, visit the conference website or contact Imogen directly at firstname.lastname@example.org