In conversation with Janette Rawlinson

Patients’ lived experiences and insights are at the heart of EORTC’s mission to improve cancer research. In this post, we speak with patient partner Janette Rawlinson, who offers a compelling look at how patients can influence and elevate the clinical research process from within.

Janette Rawlinson - Patient

My involvement started with a UK cancer charity, in 2011, commenting on patient materials using my lived experience.  I'd raised funds by swimming to improve my health in memory of a dear friend who'd died suddenly from lung cancer just months after my diagnosis.  The charity invited me to a conference where I met other patients, clinicians and managers who encouraged my involvement.  

I applied to NCRI and was appointed to their lung clinical studies group.  In 2014 I was appointed as a Patient and Public Involvement reviewer for NIHR (national institute of health research) funding board.  With a family history of cancer, and working in the NHS, I knew things needed improving. I wanted to contribute different views by those not treated at specialist centres, of different patient profiles.   

My involvement included training, conferences and meetings where I learnt so much about cancer treatments. I've taken part in studies so my data would be added to study data. I'm not involved for direct personal benefit but to help others. 

It is crucial for those with experience as a patient /carer for the condition being researched to have a voice and contribute to research.  Funders increasingly demand it. They can be involved throughout research – study design, governance, supporting recruitment and dissemination using different networks for awareness raising.  

Without the subject's aspect, it would be too easy to set up unrealistic studies on pet topics, that patients may find challenging, may not recruit well nor answer important research questions.  

I contribute a patient perspective where others may be from specialist cancer centres with less awareness of how experiences differ in district hospitals with appointments at different hospital/clinical settings, adding delays.  I live in an area of high socio-economic deprivation and represented my local area in health matters since 2006 so have a good understanding of system pressures and think my contribution may differ from others.   

My contribution to EORTC started by reviewing studies, then attending events in Brussels ie. lay summary/lay information consultation. Later I joined the patient panel and quality of life work and more recently joined the lung group, commenting on lung studies and part of Primalung study team. I have attended MCCR in 2023 and 2024.

Donations are the lifeblood of improving outcomes for patients –through research – gathering evidence from well organised studies to compare with existing treatments and outcomes.  Funding is more essential than ever.  

Without research, we would have few treatment options –in some cancers these have improved in recent years due to research.  These trials have led to treatment modes changing, improving length and quality of life for some.   

Much more to do – we need continual research especially exploring treatment efficacy in lower doses to reduce side and late effects. Treatments for those who don't respond or who have different types are sorely needed.

The era of combination therapies and targeted therapies based on a tumours' mutations/genomics have significantly changed treatments as has immunotherapy.  Changes in doses/order of treatments like radiotherapy, chemotherapy and surgery rely on clinical studies and research if global improvements are to be made.  Vaccinations, less invasive tests (e.g. liquid biopsies, saliva, breath tests) may be more commonplace if future research proves them more efficient.   

The Covid 19 pandemic demonstrated the power of collective funding and research to treat a common goal with vast progress using what was already known about respiratory viruses.  The knowledge and data gathered over decades in cancer research is huge but recent inroads demonstrate what can be achieved when the world collaborates, pools funding, shares expertise and results to develop treatments that work well with fewer side effects.  Philanthropy and donations from other sources are a crucial income stream for health research. As all of us are likely to be or know those who may be patients in future, the need to develop kinder and effective treatments is essential.

Thank you for improving life for so many!  The gift of life is precious and extending its quality and quantity can truly be life changing.  Words are not enough to show appreciation but please keep giving – it's so needed.  

Janette is an experienced patient partner involved since 2013 in various cancer, health research, clinical expert, policy committees and study groups.  Involved with EORTC since 2014 reviewing studies, speaking and attending EORTC events. She is a member of EORTC’s patient panel and lung group.

You can also help support EORTC’s game-changing clinical research to unleash scientific breakthrough and transform cancer patients’ lives. Learn how to GET INVOLVED, or Make a Contribution Now.

Share This Story

Talk to Us

Every month we select one topic to be covered by one of our experts. We’d love to hear from you.

SEND US YOUR QUESTION

 

Sign up