Personalised Cancer Care Alliance

The Personalised Cancer Care Alliance is an alliance of cancer patients, carers and representatives of patient organizations from within the WHO Eastern Mediterranean and selected countries from WHO Africa and Europe set up to advance health literacy in cancer, advocacy skills and education on personalised cancer care. 

• Promote and advocate for the predictive, preventative, participatory, personalised and pre-emptive healthcare in cancer care.
• Empower patients' organizations at a regional and national level to advocate and raise the patient voice on personalised cancer care in universal health coverage. 
• Build the capacity of patients’ organizations to empower them to advocate for personalised cancer care in universal health coverage.

 

Our Position

In October 2022, the Personalised Cancer Care Alliance produced a position paper to advocate for personalised cancer care in the Eastern Mediterranean Region. Developed with the help and support of IAPO, PhRMA MEA, leading scientists in the field, oncologists and most importantly patients’ organizations and civil societies in the region, the paper is a seminal reference when it comes to personalised cancer care (PCC) with actual patients’ voices being integrated. The way the recommendations were presented in the position paper, they provide a comprehensive road map and a way forward to make sure that personalised cancer care will be accessible to all patients in the Eastern Mediterranean Region, even in low and middle income countries. 

This position paper is the first of its kind to put personalised cancer care in the spotlight of high level policy makers while paving the road for patients’ organizations and civil societies to advocate and lobby for PCC within their own universal health coverage, communities and with policy makers in the WHO Eastern Mediterranean.

This paper sets the baseline for further discussion and development of personalised cancer care within our health systems and regions to ensure we have a predictive, preventative, participatory, personalised and pre-emptive cancer care.

View the Position Paper - English

 

View the Position Paper - Arabic

 

Why now?

The Personalised Cancer Care Alliance was set up because we now know that not all patients are the same, and not all cancers are the same, and therefore a one size fits all cancer care approach is not serving the patient or society well.

Over the last decade or so, with the advent of genetic engineering tools like CRISPR-Cas 9 and the discovery of biomarkers, we have established that each cancer patient is different, and each type of cancer is also different, and there are even differences in the same cancer type across patients. 

More importantly, we know that each patient responds differently to the same treatment. One size fits all cancer care is not serving the patient or society well. We must look at alternatives. We can now offer services and treatments that are ‘genomically informed’ and individualised to the patient, based on the patient’s own genetics, their metabolic profile, environment, and habits. 

Personalised medicine, referred to by different terminology like genomic medicine, precision medicine, stratified medicine and personalised healthcare, is one approach in oncology that can help us to structure a high-resolution personalised treatment plan for the patient based on his/her specific genomic aberrations in their tumour and personal circumstance - the social determinants of health. 

Personalised cancer care looks at the full biomarker range through simple liquid biopsies and helps oncologists select the most clinically effective and beneficial therapy (based on patient preference and patient reported outcome measure) for that individual patient. 

The health technology and the pharmacodynamics approaches in oncology can further personalise cancer care by ensuring that we can determine how the patient is responding to their treatment at the earliest. If we need to change treatment, we can do so at the earliest. 

Personalised cancer care solves our need to deliver patient centred healthcare as we can stratify and profile patients very early on and know who will respond well and who will not respond to treatment. This can prevent unnecessary hit and miss treatments, prolonged treatments, exposer of patients to harsh side effects, and more importantly turn their lives upside down and force them to structure their lives around healthcare facilities. 

Personalised cancer care, when paired with digital health and virtual clinics underpinned by artificial intelligence and machine learning, can be very liberating and restore autonomy, choice and good mental health and wellbeing.

 

Activities in 2022

Built a coalition: The Personalised Cancer Care Alliance (PCCA)

The Personalised Cancer Care Alliance was set up as an alliance comprising regional patient groups and patients affected by cancer. The alliance invited young patients and their carers to join. 

 Advanced Cancer Health Literacy in Personalised Cancer Care

We co-produced webinars with the PCCA to cover:

•  Working within alliances and multistakeholder communities to advance healthcare for all.
• The Cancer Burden in the Region and the National Cancer Control Plans.
• Innovation in Cancer Care. The health technology, bioinformatics, genomic medicine, biomarkers, immunotherapies, targeted therapies, CAR-T and other advances in early diagnosis, treatment, cure, and rehabilitation.
• Advocating for Access. 
• How to co-produce an effective position paper for the region on personalised cancer care.

 Developed a Position Paper 

We co-producde a position paper to cover all elements of personalised healthcare literacy, health technology, access, and other aspects like the likely economic, social and cultural impact of PCC in the region.  

 Advanced and Supported Regional and National PCCA work

The PCCA was sustained through an annual programme that will continue to strengthen the alliance, helped develop a community of practice, grew it from strength to strength and found placements for our expert patients at different levels of the regions health system decision making structures. 

 

Resources 

In 2022, we held a series of 4 webinars to build patients’ capacity to work with us in the development of the first PCCA position paper.

• Webinar 1: Cancer Burden and Cancer Control Plans in the Middle East & North and Sub-Saharan Africa (30 March 2022)
• Webinar 2: Innovation just for you: How Can Personalised Cancer Care Improve Diagnosis, Treatment, Care and Outcomes? (12 May 2022)
• Webinar 3: Access to Personalised Cancer Care Innovation (22 June 2022)
• Webinar 4: Workshop to Plan a Position Paper on Personalised Cancer Care in the Middle East & North and Sub-Saharan Africa (13 July 2022)

 

Contact us

If you are a cancer patient, carer or representative of a patient organization from within the WHO Eastern Mediterranean and selected countries from WHO Africa and Europe, and would like to learn more about the Alliance, please contact Dani Mothci (Member Engagement Manager, IAPO) at dani@iapo.org.uk.

 

Follow us on Social Media

Twitter - @PCCAlliance

Facebook - Personalised Cancer Care Alliance

LinkedIn - Personalised Cancer Care Alliance