Just before lock-down I was due to be speaking in Madrid at an EBMT conference about the growing need for patient involvement, particularly in research. I was very honoured when The Lancet invited me to write a piece for them, being the first patient to do so!
“My name is Chris Lewis. In 2007 I was diagnosed with stage 4 mantle cell lymphoma and given six months to live. You can probably understand why given this background I am delighted to be invited to write this article. Having spent the last thirteen years enduring an unrelated donor stem-cell transplant, many outbreaks of graft-versus-host disease, a donor lymphocyte infusion, and three years of extracorporeal photopheresis treatment, I would like to talk about my experience as a patient being involved with cancer on the front line.
I have a business background working as a self-employed consultant, within the ladies clothing industry. A ruthless sector where many compromised their own principles to succeed. Once nature had enrolled me into the cancer club I wanted to see how I could improve things for people like me, who are living with cancer. I noticed many issues that were halting the pace of progress. The biggest one being a total lack of collaboration between the largest participants in the sector. All with their own agendas. Big pharma, giant charities, politicians, and of course the UK National Health Service, who are always stuck somewhere in the middle.
In 2008 it was difficult to find one single area that was interested in the long-term views of patients. All talking about improving our lives, but none actually engaging face to face. Most wanting to dictate a regime that worked for themselves. People living with cancer are a great challenge for society. Try looking for a job, finding insurance, or borrowing money from a bank. But as more of us are surviving, we cannot continue this way. So, what does success look like once you have cancer?
As a patient, hopefully surviving and living a reasonable life, with the time you have left. But as a clinician, it seems like doing your best to eradicate the cancer, so that the patient can leave the hospital environment alive. I am grateful to still be living of course, and my story does look successful for both parties, but I have spent most of my life dealing with the side-effects of my complex treatment.
However, I am seeing a change in attitude in the last two or three years, from the clinical sector, who are now understanding why patients must be involved in research. Something which has previously been frowned upon. We, patients and physicians, have now reached the mutual understanding that the one-size-fits-all approach is no longer appropriate with a disease as unique as cancer.
In my personal quest to ensure that patients are treated as equals and not just a set of case notes, I run a website and am an influential voice for the cancer community on social media. My story is quite unique, and I have been invited to collaborate with several drug companies and clinical organisations to ensure that we can attempt to get more patients involved in research.
Naturally, there are many hurdles involved before this can happen regularly, but I am pleased to see that there is a desire to work closer with patients in the long term. One of the organisations I work closely with is the European Society for Blood and Marrow Transplantation (EBMT), which is dealing with blood cancer and its complex treatments.
This is an organisation that has in its annual meeting programme a special day with a patient, family, and donor focus, which is a fantastic opportunity to meet and talk to clinicians too. I am very honoured to be speaking at the next annual meeting about the involvement of patients in research.
I have been working with many healthcare professionals recently designing questionnaires to help research teams find patients who would like to participate in research and inform patients who would like to engage on how they can proceed. Communication is still a massive challenge to this task. Research of course can be a very dry subject when trying to communicate with people from outside academia. So work is being done to help the process to be more patient friendly.
My experience of cancer is now into its 13th year, and finally, I can see the desire and understanding that nothing sustainable will be achieved without patients being at the heart of these initiatives, instead of being part of a tick box exercise, as it currently is. As a businessman, the most important part of my work were my customers—how could I know best what they require? We had to work together to find that mutually satisfying position. I still struggle to understand why the cancer sector as a whole continues to ignore the incredible skills, experience, and good-will patients can offer. Please remember that we are also experts!”
This piece was written pre Covid19 times, when I was starting to see the progress that was being made in the cancer sector. Not just with drugs and treatment, but that the role of patients was finally being recognised. I believe what I am seeing now has set us back at least 10 years. We cannot wait for healthcare to work at it’s previous speed to catch up. Having seen what can be done by people working together with a common goal, Covid19 should soon be less of a worry to our society.
Unfortunately with the lack of strong leadership in the world, unless us patients begin to collaborate I can see little progress in the cancer sector for many years. Not only that we will be losing a lot of resource due to financial constraints, as we are starting to see now. Suspension of trials and cutting back on screening etc. We can no longer be so passive with the organisations that are there to help us. From cancer research generally through the NHS and including charities wasting millions on lobbying Governments that are ever changing.
Like most things from now on we need much more action and less committees and enquiries! As always these are my personal thoughts and opinions based on my experience. Please feel free to share your below.