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Activities

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Discussing “Setting Patients up for Success” with Bowel Research UK
Bowel Research UK is a great charity that not only conducts important research on bowel diseases, they also are excellent at patient engagement!
 
In the CAN I BUTT IN podcast, Sam Alexandra Rose chats with patients about what matters to them. In this episode Sam and I talk about the importance of setting patients up for success by improving communication between doctors, nurses and patients.
 
This includes the work I’ve been doing around the nocebo effect and Sam relates some of the challenges she has faced, and how knowing about the nocebo effect could have made a difference for her.
Click here for the CAN I BUTT IN podcast
Guest on a podcast about patient advocacy in oncology
Roger Legtenberg from Admedicum in Amsterdam invited me to be part of his podcast series “Patients On The Move” after we met at a patient centricity conference.
 
Here’s their information on the podcast:
“In this 6th episode of the Patients on the Move Podcast, host Roger Legtenberg sits down with Steve Clark, a well recognised stage 4 cancer patient & advocate from the UK who has been living life with the disease for over 10 years so far. Join this impactful conversation as they delve into the importance of positive focus in treatment discussions & the role that #patientengagement can play.
Hear from Steve about his personal journey with stage 4 cancer and all his initiatives to contribute towards improved patient advocacy and patient-relevant care.”
Click here to listen to the podcast
Representing patients with Bowel Cancer UK at the BioIndustry conference in Brighton
Great to represent patients at the #BioProcessUK conference in Brighton, with Bowel Cancer UK. This is a meeting of the companies who are carrying out some of the most exciting and innovative research into new medicines, and they have chosen Bowel Cancer UK as their charity of the year.
 
At the meeting I shared how to set patients up for success and importance of integrating patients into study design.
 
This was my third conference presentation in 4 weeks, I anticipated cries of “he’s at it again”
 
Presenting at the Patient Centricity conference in Amsterdam
Such a privilege to participate in the Patient Centricity conference in Amsterdam. So good to meet and hear from all these thought leaders from patient organisations and pharma companies across Europe.
 
Dr Sumira Riaz and I were proud to share more on our work on the Nocebo Effect and why it’s so important to cancer patients – highlighting the importance of our doctors and nurses taking the time with us to identify and address any misconceptions we may have picked up that could negatively affect how we approach our treatment.
 
White paper - nocebo effect
New white paper on improving cancer patient outcomes
This new white paper highlights the need for improved education on communication skills in oncology, and the importance of integrating patients into development of programmes.
 
It was a privilege to work with inspirational experts on this paper – Professor Lesley Fallowfield DBE, Lorna Warwick from the Lymphoma Coalition, and Victoria Harvey-Jones from Medscape.
 
For many years I’ve been presenting on the need to change the language of cancer, to bring it up-to-date and make it more patient-friendly. This needs to happen, combined with training to improve the communication skills of of oncology doctors and nurses. This new white paper is a significant step forward in achieving this goal on a global basis.
 
This entire programme is a great example of patient integration at all stages from concept development through to delivery, and will be carrying on further (watch this space). As Patient Advocate I had an equal seat at the table.
 
I hope you find this piece to be informative and thought provoking, please let me know your thoughts!
White paper - enhancing cancer outcomes
Attending and presenting at ESMO in Madrid
Really enjoyed being part of the European Society of Medical Oncology #ESMO2023 in Madrid. It was great to #RepresentPatients as a #PatientAdvocate at this oncology congress.
 
There are many great advances coming through in the science and treatment of cancer, but what’s most encouraging is that the #PatientVoice can be heard throughout! There’s room to develop this but there’s a will to make it happen.
 
Lots of personal highlights
  • Being with experts to discuss the latest data,
  • Meeting fellow advocates to share ideas,
  • Sharing the new white paper about improving communication skills in oncology and the importance of patients being integral to this,
  • Meeting with my oncologist for dinner, the first time we’ve met socially 10 years into my treatment,
  • Feeling that I’m overcoming my post-covid social anxiety, I didn’t have a panic attack during the travel or meetings.
Thank you to the organisers for such a good congress and to my friends at Medscape for inviting me to be part of their event.
 
#PatientAdvocacy 
 
How to navigate the Nocebo Effect – Strive’s first white paper!
Feeling proud of my FIRST white paper!
 
As a patient advocate this is a very important topic that simply isn’t discussed enough, so few people are even aware of the nocebo effect, let alone how much it can affect treatment outcomes. Yet it can be reduced in the simplest of ways – better communication skills.
 
Please have a read of the white paper and let us know your thoughts. It’s available by clicking on the button.
 
I really enjoyed working with Dr Sumira Riaz on this project, a truly complimentary partnership of HCP and patient advocate!
 
#PatientAdvocacy
 
White paper - navigating the Nocebo Effect
SUCCESS! Treatment Break rule change for bowel cancer patients
NHS England has scrapped it’s rule against treatment breaks for bowel cancer patients!
 
This is fab news for so many people and it’s a triumph for common sense. Last year Steve Clark and Jo Weeks set up a petition to get the rule scrapped and massed 57,372 signatures. Many people on treatments like cetuximab and panitumumab can now breathe a sigh of relief.
 
There was a mistaken report last November that the rule had been scrapped but that turned out to be false, apparently this news has been confirmed as correct!
 
#RepresentingPatients
#PatientAdvocacy 
Read the report about the Treatment Break rule change
Keynote presentation on patient involvement in research to Cancer Research Horizons in Newcastle 
It was an early start for this one – Newcastle and back in a day! But it was worth it.
 
Presented to the clinical discovery and research teams from CANCER RESEARCH HORIZONS , part of Cancer Research UK. They focus on taking cancer discovery “from bench to bedside” so it’s vital they have contact with patients.
 
The focus of my talk was the need to ensure there is patient integration and input at all stages of their research, and that their communication with patients recruited into their trials are more patient-focussed.
 
They were a great audience, fully engaged and I know they are already implementing ways to improve their patient engagement to ultimately improve their studies. Such a rewarding experience working with this exciting team, and I’m glad to say the collaboration is continuing.
 
#RepresentingPatients
#PatientAdvocacy 
Learn more about Cancer Research Horizons
TENacity – TEN YEARS OF LIVING LIFE WITH STAGE 4 CANCER 
This is a milestone that seemed impossible when I was diagnosed in May 2013 – my FIRST decade of striving and thriving, I’m calling it #TENacity!
 
I’ve been able to achieve so much in this time
  • Travelled the world
  • Set up a successful little company
  • Established Strive for Five
  • Qualified as a yoga teacher
  • Better relationships with my family and friends
  • Adopted the lovely Pippa (my dog) 
I’m so grateful to my medical & surgical teams, my friends & family and the fab cancer community for getting me here.
 
PATIENT INTEGRATION IN RESEARCH PRESENTATION IN LAUSANNE, SWITZERLAND
Debiopharm is a Swiss company that specialises in discovery and early development of new treatments for cancer. They invited me over to their head office in Lausanne to present to them about improving patient centricity and integration.
 
It’s great that companies like this are so keen to improve how they focus on patients, especially involving us in designing their clinical trials. I was warmly welcomed by everyone there and their questions demonstrated how important this is to them.
 
I find it’s a great privilege to be able to represent patients in this way. 
 
And what a beautiful city!
STRIVE FOR FIVE IS NOW PART OF THE GLOBAL COLON CANCER ASSOCIATION
STRIVE FOR FIVE is proud to now be a patient advocacy association member of the Global Colon Cancer Association.  
 
Global Colon Cancer Association’s worldwide network of organizations is “dedicated to raising awareness about colorectal (bowel) cancer, funding research, supporting patients and caregivers, and lobbying local and national governments and public health agencies. Each member organization serves a crucial role in working to reach our collective goal to save countless lives through increasing access to treatment and screening, raising awareness, and research”.
 
VISIT Global Colon Cancer Association website
REPRESENTING PATIENTS AT NORTH-WEST RESEARCH FORUM
I was privileged to be the patient voice at the first North-West Advanced Colorectal Cancer study day in Liverpool.
 
My presentation focussed on how important research is for patients and how they can improve patient involvement in studies by working with us on the study design and focussing on how they communicate with us but remembering that we may be “patients”, but we’re people first and foremost.
 
It’s great that patients are being included as an integral part of meetings like this.
 
This was a bit of a challenge as there were two screen with me presenting from the middle, haven’t done that for a while!
SIMPLE INFOGRAPHIC ON KEY BIOMARKERS
One are of modern cancer care that causes a lot of confusion is BIOMARKERS – terms like BRAF, KRAS,Wild Type, Mutation, MSI, MMR and MMS.
 
I’ve tried to simplify this with this infographic which I’ve written with Stephen Rowley. Stephen has a web page with more information which is on the link to the right.
 
Another excellent resource on biomarkers is from the Global Colon Cancer Association which you can read HERE
 
 
READ the biomarker webpage
KEYNOTE PRESENTATION TO CRUK CLINICAL RESEARCH CONFERENCE IN LONDON
I was honoured to be invited to the first Cancer Research UK Research and Innovation conference to take place since COVID. This was  a HUGE meeting of over 300 researchers.
 
These fab people are carrying out amazing research into the cancer diagnostics and treatments of the future.
 
It was my privilege to talk to them about involving patient in setting up their studies, and how to improve the way they communicate with us about studies. Such a great discussion followed!
PRESENTED AT PATIENT CENTRICITY CONFERENCE IN LONDON
Great experience #RepresentingPatients today at the Patient Centricity and Engagement Conference in London.
 
Privileged to present with Dr Sumira Riaz on setting patients up for success – big focus on navigating the #NoceboEffect by understanding the psychological factors that affect how patients approach treatment.
 
Also that doctors and researchers should see PATIENTS AS PEOPLE first and foremost.
 
Lots of great feedback from a packed house – WATCH THIS SPACE FOR A WHITE PAPER SOON.
WESTMINSTER HALL DEBATE FOR CANCER RESEARCH UK
It was great to be in Parliament as a Cancer Research UK Campaigns Ambassador, for the debate on how the government will achieve #SmokingFree by 2030.
 
The debate was led by Bob Blackman MP, Chair of the APPG on Smoking and Health, I enjoyed meeting with him and some of the MPs who spoke in the debate along with my fellow ambassador Julie Tucker (see pic).
 
The Independent article attached gives a full report.
 
I previously thought that most of the work had been completed with stopping people smoking, but I was wrong.
READ the report in The Independent
PRESENTED TO FELLOW PATIENTS AT “CANCER SUPPORT NETWORK: CANCER CHAMPIONS”
It was a pleasure to present to a”full house” at Cancer Support Network : Cancer Champions : Berkshire on Zoom.
 
It was great to be able to share with other patients that there can be hope with stage 4 cancer, and talk through some of the tips that have helped me.
 
They’ve kindly agreed I can share the recording which is on the link in the box, the passcode is L3pD5cy$
 
There was a bit of a stumble at the start while we sorted the technical stuff out but then everything was fine.
WATCH the video
FACULTY MEMBER FOR “CLOSING THE GAPS IN PATIENT CENTRICITY”
Steve was part of the internationally renowned panel for this meeting organised by Medscape at the European Society of Medical Oncology meeting in Paris on 11 September.
 
Chaired by Dr John Whyte (USA), the panel included Professor Nadia Harbeck (Munich, Germany), Professor Dame Leslie Fallowfield (Brighton, UK) and Steve in his role as a Patient Advocate.
 
The main focus of the discussion was on doctor and nurse communications skills and terminology. It is hoped that this meeting is the catalyst to begin an international programme of medical education to improve patient centricity.
GUEST BLOG ON BETTER USE OF PATIENT DATA TO IMPROVE CANCER CARE IN THE NHS
The NHS collects lots of useful information about us and our treatment , but it really needs to improve how this data is actually used so we can improve patient care.
 
This is highlighted in an important new paper, and in the related blog I was invited to write for Bowel cancer Intelligence UK.
READ THE BLOG
PETITION TO ALLOW STAGE 4 CANCER PATIENTS TO RESTART THERAPY AFTER A TREATMENT BREAK

Under the current NHS England policy, patients who are having successful treatment with the medicines cetuximab or panitumumab may not restart treatment if they need a break longer than 6 weeks. 

Steve, together with fellow patient Jo Weeks, has set up a petition which has already received over 40,000 signatures.

Please sign this petition so we can get this rule scrapped.

Sign the petition
GUEST BLOG ON PATIENT INVOLVEMENT IN STUDIES

Steve was invited to write a guest blog for the eCRUSADers website recently.

In this blog Steve discusses how his experience as a cancer patient has enabled him to become actively involved in several clinical studies. He highlights the importance of actively engaging patients and the public in the research process from the outset.

READ THE BLOG
WEBINAR ON THE CREATION OF A BOWEL CANCER DATABASE IN SCOTLAND

Following the publication of the paper (see earlier update), Steve was invited to be part of the team presenting this work for the first time.

This webinar is part of the “Power of Population Data Science Webinar Series” for the International Journal of Population Data Science.

Steve’s presentation was on “Accessing health data for research – the patient perspective”.

WATCH THE WEBINAR
CAMPAIGNS AMBASSADOR WITH CANCER RESEARCH UK

Steve has just been confirmed as a Campaigns Ambassador with Cancer Research UK.

In this role, he will be meeting with politicians to discuss the CRUK campaigns and try to influence key changes for the benefit of people with cancer.

CO-AUTHOR ON NEW PAPER ON A LINKED BOWEL CANCER DATABASE

In April 2021 Steve was co-author on a paper in a peer-reviewed journal for the first time. As well as being a personal milestone for Steve, this publication highlights the fractured way patient data is collected and managed.

This important piece details the two year programme to bring together all 23 separate Scottish databases where information is stored on bowel cancer patients. This new dataset makes research far easier and quicker which can only be good for patients!

READ THE PAPER
PODCASTS ON HOW A POSITIVE MINDSET HAS HELPED STEVE’S CANCER JOURNEY

As part of Mindset Unfiltered, Alex Legouix talks with Steve Clark about how his positive approach has helped him cope with having advanced bowel cancer and has got him through several operations and six years of chemo (so far).

Steve is living a full and fun life as well as devoting much of his time to helping others with this disease.

There was so much to share that it’s formed three episodes and is definitely worth a listen if you or a loved one are facing cancer, or if you’d like to hear a truly uplifting story of how a positive approach to life can make all the difference.

Alex asks Steve about how a positive approach has helped him at all points.

  • Coming to terms with the Stage 4 diagnosis
  • Handling major surgery and over 6 years of chemotherapy
  • How a change of mindset made all the difference to how he handled chemo
  • What survival stats and prognosis estimates actually mean to us as individuals
  • Survivor guilt and how this is a driver for Steve
  • Relationships
  • and living life to the full!

Take a look at Season 2, Episodes 4, 5 and 6 on the link to the right or via your usual podcast route by searching for ‘Mindset Unfiltered’.

LISTEN TO THE MINDSET UNFILTERED PODCASTS
COMMUNIQUE AWARD
 

Steve has been presented a lifetime achievement award at the prestigious Communique Awards.

The HEALTHCARE COMMUNICATIONS ADVOCATE award is presented “to an individual who has made an outstanding contribution through healthcare communication throughout their career”. This is in recognition of Steve’s professional achievements as well as Strive for Five.

VIEW THE AWARD PAGE
BOWEL CANCER UK PODCAST

Steve was invited onto the charity’s podcast on CHEMOTHERAPY as an ‘expert patient’. In this episode, the BBC’s George Alagiah interviewed Steve and Professor Mark Saunders from the Christie Hospital.

This is a great series and well worth a listen by clicking the link to the right or via your usual podcast route by searching for ‘Bowel Cancer UK’.

LISTEN TO THE CHEMOTHERAPY PODCAST
ACCELERATOR STUDY

Steve has been invited to be a patient advisor on the ACCELERATOR study. This exciting new approach to research in advanced colorectal cancer has the potential to make a big difference in the future, Steve is honoured to be part of this at such an early stage.