Patients Are Also Experts!

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.

The Grove Hotel Bournemouth

I am an official support partner of the Grove Hotel in Bournemouth. The only hotel in the UK specifically for people affected by cancer and other life limiting conditions. 

 

36 Comments

  1. Great points Chris!

    It is pointless designing new initiatives/treatments for patients if they are not part of the preliminary conversations. How does anyone know what works, what may work but more importantly how does the patient feel about it all. After all it is supposed to be for the patient living with cancer.

    You are also spot on regarding us getting involved behind the scenes. If we don’t we will pay a heavy price. This is not the time to be passive.

  2. I love all the survivorship research in cancer but my god I am tired of feeling that so few actual patients have a voice in shaping that research.

    • You are right unfortunately! I can’t believe we have spent so many years and so much money, working without patients! We need real meaningful #partnerships now!

  3. Really important that we engage patients in research from the beginning, and not just with a qofl questionnaire.

    • Thank you Alison. Without meaningful patient involvement we will fail to progress the #cancer sector in a timely fashion. Something that is not happening now

      • I have my own small service development project ongoing – granted it has a slight hiatus- but I went with the experience based co-design model precisely because it has to have patients input so it works for patients #cnsvalue

        • Spot on Alison! With #Covid19 taking so much resource from #cancer, now is the time we must all work together. Patient expertise is the one thing that has been missing for so many years!

  4. I agree, this is so important that patients have a voice. However there seems to be little to no opportunity, even at the most basic level, for this.

    • You are right unfortunately! I can’t believe we have spent so many years and so much money, working without patients! We need real meaningful #partnerships now!

  5. Full Circle Therapies
    Full Circle Therapies

    Excellent piece in @TheLancetHaem Your words, insight & experience & all those who understand – personally – what a life-changing, life-challenging illness means, are vital links in chain. #PatientExperience #PatientVoices #collaboration #Cancercare #NeverMoreNeeded

    • Thank you! How can we expect to help patients who are not involved meaningfully at any stage of the process? #Cancer

  6. I completely agree with this. It is so important to engage patients in research. You can’t take the wealth of knowledge and personal experience for granted that patients can offer.

    • Indeed they do Tania. The issue I have is that we are not involved as true partners making game changing decisions. Focus groups or box ticking more often than not.

      • I think its something that needs to be worked on. I know universities and the national institute of health research look for patient and public involvement in research plans, because they know how essential it is.

        • Indeed they do Tania. The issue I have is that we are not involved as true partners making game changing decisions. Focus groups or box ticking more often than not.

  7. Chris, I have no doubt that you speak as you find, but as a children’s cancer doctor, I and my colleagues have been working closely with parents and parent run charities for many years. We have developed close supportive and functional relationships. I don’t see your “tick box”.

    • Hi Mark, yes I do speak as I find, and thank you so much for sharing your own experiences. I am very aware of the great work that goes on in childhood cancer. For which we are all grateful. But I and many do experience the tick box.

  8. I’m sure @NeuroblastomaUK @SKC_Europe @J_A_C_K999 @adamsappeal @angelapolanco16 and others will agree with me Professional groups such as @CCLG_UK and @NCRI_partners have engaged well with patients parents – at least in paediatric oncology – for a long time.

  9. Besides, it really isn’t “us and them”. Cancer professionals all have family members, loved ones and colleagues who have lived with (and sometimes died from) cancer (and its treatments). We are not a race apart. We do have some idea.

    • Great tweet Mark. We certainly are all impacted by cancer. Not intended to create ‘us and them’ at all. But the system as a whole is not as patient focussed as it should be in my opinion. Thank you for all you and your colleagues do.

  10. We were made to feel grateful to be alive, no matter the cost of QOL. Now we have experience and how small changes can make a big difference down the line… but… we had already filled out the QOL form that says we’re fine, so why would they change a process that “works”

  11. There really is and i fully agree and I think if now, when process is ripe for change with many processes and procedures being rewritten for #Covid19 then its a wasted opportunity for voices to be heard, and #change to be made

    • You have summed it up perfectly Pete! We can not rely on Government or charity. Science and pharma will follow the cash. Patients must create that change.

      • Absolutely, we are the end user of #Pharma and #Science we must not be made to feel grateful, but made to feel that we are in control of our treatment, and how we can help future treatment and improve outcomes for others, by having a voice that is heard

  12. Agree. Just going through cancer care with a family member (being myself a physician), have been shocked and humbled by lack of communication and empathy…especially in midst of covid. We need to respect patients and families…it is happening to them (us)!

    • Thank you for sharing your own experience Valerie. I’m sorry to hear it but not surprised. So important to get this issue out there. The system is becoming more difficult for anyone affected by #cancer unfortunately.

  13. So true Chris… this makes it so much harder to mange the late effects and economic impact which is one of the reasons why we created WeCanAccess

  14. Great article Chris, “When nature enrolled me into the cancer club” I like that phrase

  15. Absolutely, in paediatric oncology we are so far ahead in the collaborative working approach.
    @TheLancetHaem perhaps you could demonstrate this difference in your feature? @NCRI_partners @CCLG_UK

    • It certainly seems that way Angela. I’m so delighted to hear that but it is not what us older folks experience. Happy to feature a piece if someone would like to write one? Important to share the positive things.

  16. I agree Chris. As patients we are uniquely placed to contribute and collaborate for positive change. I’m sure you know I’ve been involved in patient advocacy for some time I will continue until those who can, do. @SimonHarrisTD @alankellylabour @loreillysf

    • Same for me Siobhan! This piece has created some really interesting interaction. Thank you so much for all the incredible work you and your team do!

  17. Thanks Chris for all your hard work for patient inclusion for cancer. It’s hard to get involved in the medical side as there is still a bit of a dr knows best attitude. I am currently with 12 other ladies trying to set up a charity (until lockdown ) for lobular breast cancer info ( not the same as other breast cancers but included under the same umbrella) all of us have done extensive research into this type and have made a few small inroads but still encounter a less than helpful attitude at times. Patient inclusion is vital in cancer research and input to medics, thank you

  18. I first saw this issue in 2008 and I couldn’t believe it! As we can all see, nothing has really improved in all those years, which I find very sad. I now see a massive opportunity that Covid has created for us cancer patients to come together and push stronger for change. There is so little collaboration generally which is truly shocking. I now have a voice individually and through my charity so I’m ensuring that we push hard for some timely action!! Good luck with yours btw and if I can help with anything please let me know, Chris

Leave a Reply