5 minutes with: Janette Rawlinson

Janette has been involved with health research since late 2013, particularly in the area of cancer and thoracic malignancies. As an active advocate, she combines personal lived experience with professional experience to help drive the inclusion of patients’ perspectives across research design, policy and service implementation. 

She has current roles across a wealth of advisory groups and committees. These include the European Lung Foundation (ELF) Lung Cancer Patient Advisory Group, European Respiratory Society (ERS) Taskforces on Lung Cancer and Lung Screening Group, EORTC Patient Panel, West Midlands Cancer Alliance Lung Cancer and Mesothelioma Expert Advisory Group, UK Lung Cancer Clinical Expert Group, NHSE Lung Screening Advisory Group, British Thoracic Oncology Group (BTOG) Steering Committee, Cancer Research UK (CRUK) Clinical Expert Review Panel, and Roy Castle Lung Cancer Foundation Patient Literature Review Panel.

Janette has previously been a part of the NIHR Funding Board (2014-2018) and the NCRI Lung Group and Consumer Forum (2013-2021). She has also served as NHS Non-Executive Director in Primary Care Trust (2006-2012), Chair of Community Healthcare Services (2007-2011), and Lay Director on a Clinical Commissioning Group (2012-2021).

Janette is a regular contributor to a number of lung cancer research studies. This contribution is wide-ranging – she is involved in research design, governance, patient-facing document review, research study oversight, and dissemination through trial steering committees and management groups. She also contributes to various cancer events on a range of patient-related topics.

Beyond this, Janette has an international senior management career in corporate business. She has also worked as an independent consultant across multiple sectors, with a varied client portfolio, for many years.

When/where do you get your best ideas?

Usually when swimming lengths! The repetitive action enables me to empty my head and prioritise thoughts. It improves breathing and clears the ‘noise’, to create space for new ideas or to solve problems.

Which failure(s) changed you the most? 

Not necessarily a failure but it felt like it at the time: I was made redundant after 19 years working for a highly competitive multinational company. I’d progressed through the ranks from the lowest grade freight clerk to Commercial Manager for the company’s Italian arm. This in effect ended the career I’d gone straight into after my A Levels.    

However, this proved to be a salutary lesson. It led to me transferring my skills to economic development and inward investment. I spent the next 7 years broadening my skillset considerably and creating new opportunities. The experience taught me many valuable lessons, including that ‘when one door closes, another opens.’

What is the best piece of advice (work or life) you’ve been given? 

“You’re as good as any, better than many, and second to none.” These were words of encouragement from a friend when I had decided to go freelance after 27 years in corporate life, and was doubting how I would fare.

I have also found the following wisdom valuable: learn from mistakes; don’t blame individuals, but instead ask how things could be better the next time.

I’m inspired most by… 

People overcoming the odds, and those taking action to improve things for others, especially when done selflessly and without seeking glory. There are so many unsung heroes and champions hidden across communities making a difference every day.

What’s an event that changed your life? 

A friend dying three days before my 25th birthday. I was physically sick on hearing the news. I had not appreciated that people my own age could die suddenly and unexpectedly, from a manageable condition. It made me appreciate that none of us are guaranteed a long life.

The unexpected loss of my younger sister in 2001 (40), her eldest daughter (33) in 2019, and my older sister a year ago have all reminded me of that earlier life lesson. 

What’s the next big thing in cancer? What will be a potential game changer? 

Finding acceptable, safer and effective methods for earlier detection (including liquid biopsies, blood tests, screening and AI) all show promise. However, scaling up in the NHS comes with many challenges. In order to meaningful address longstanding health inequalities, the UK must work on quality assured treatment pathways on a population-wide level. It is vital that such pathways do not end up restricted to specialist centres alone, or clustered in more affluent areas.

Game changers may be more related to effective behaviour change interventions, rather than just laboratory science. Many cancers are driven by lifestyle and environmental factors, yet altering lifestyle choices is highly complex: these remain tied to multiple social, economic and political determinants of health.

Which piece of work are you most proud of from the last five years?

Speaking at the EORTC Cancer Survivorship Summit in Brussels in 2018, about issues faced by self-employed patients and the accompanying vulnerability that comes with no employer safeguards in place. This led to speaking at ECCO’s conference in Vienna in the same year. I then spoke at an ECPC event in 2020, highlighting the area of survivorship as another frontier of cancer care improvement – ECPC: There is Life after Cancer – Putting an End to the Discrimination.

Which books have greatly influenced your life?

To Kill a Mockingbird by Harper Lee, which I studied for my O Levels back in 1975. I still quote Atticus Finch’s comment to this day – “You never really understand a person until you consider things from his point of view… until you climb in his skin and walk around in it.”

Also Cancer is a Word, Not a Sentence, by Dr Rob Buckman. This helped me to put symptoms, experiences and awareness into greater context. It remains of great holistic relevance for anyone impacted by cancer – not just patients.

Finally, Anticancer: A New Way of Life, by Dr David Servan-Schreiber. This addresses the many lifestyle factors associated with increased overall being, through the author’s own experience of a terminal brain cancer diagnosis. The book has greatly improved many people’s experiences with cancer.

If you could have a gigantic billboard anywhere with anything on it, what would it say and why?

Anyone with lungs can get lung cancer!

Decades of work stressing the link between smoking and lung cancer has been vital for bringing about policy-level change. However, this has resulted in lung cancer risk in non-smokers being largely overlooked, by the general public and health professionals alike. This sees a large degree of stigmatisation attached to an already devastating lung cancer diagnosis.

What is one of the best or most worthwhile investments you’ve ever made?

Attending the ICPV VOICE course for patient advocates at Barts Cancer Centre in September 2014. This filled many gaps when I first joined the NCRI Lung Group, and created a firm foundation on which to build further learning.

What are bad recommendations you hear in your profession or area of expertise?

‘Eat anything and everything to gain weight after a cancer diagnosis’

This is well-intentioned, but sadly also misguided. Nutrition is important throughout life, and never more so than when recovering from cancer and its harsh treatments. Food can make all the difference to optimising energy levels, avoiding blood sugar slumps, and improving mood. It is much better to encourage moderation and healthy eating, based on what existing guidance there is, than to simply state “there’s limited evidence” when patients ask clinicians about taking care of themselves longer-term.

In the last five years, what have you become better at saying no to? What new realisations and/or approaches have helped?

I’m still working on this…

When you feel overwhelmed or unfocussed, what do you do?

I remind myself of the George Harrison album title ‘All Things Must Pass’. It’s got me through some tough times. Alternatively, I go swimming!

The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorses those views or opinions.

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