Kathy Oliver is Chair and a Co-Director of the International Brain Tumour Alliance (IBTA – www.theibta.org), a global network founded in 2005 as a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro-oncology.
A former freelance journalist, Kathy was thrown into the world of association work when her and her husband’s 24-year-old son was diagnosed with a brain tumour in 2004. Her son’s terminal cancer, and his unfaltering courage, served as her inspiration to work for the wider neuro-oncology community by co-founding the IBTA.
Kathy campaigns for equitable access to brain tumour therapies; encourages the establishment of brain tumour patient/caregiver support groups in countries where they don’t yet exist; and raises awareness of the challenges of this devastating disease.
She is involved in a broad spectrum of high-level, multi-stakeholder initiatives on quality of life and patient reported outcomes (the SISAQOL-IMI project); rare cancers; cancer patient rights-based advocacy; brain tumour treatment guidelines; regulatory matters and palliative care.
She is Co-Chair of the European Cancer Organisation’s Patient Advisory Committee and on the Steering Committee of EURACAN, the European Reference Network for Rare Adult Solid Tumours. She is a former member of the European Commission’s Expert Group on Cancer Control and is involved in the All.Can initiative for driving sustainable cancer care. Kathy has authored/co-authored a wide range of journal papers, book chapters and magazine articles.
Why do you invest your time & efforts in association work?
Helping to establish and then run a not-for-profit association focussed on one of the deadliest of cancers was certainly not a career path I ever planned to take. I had no background in science or medicine and no direct experience of the neuro-oncology field. But faced with the life-altering situation of your child being diagnosed with a fatal disease makes one thoroughly re-examine priorities and life plans.
I chose to invest my learnings, time and efforts in helping to create an association that could bring comfort, camaraderie and hope to people around the world whose lives have been touched by a brain tumour. In the fifteen years of the IBTA’s existence, I have met the most inspirational brain tumour patients and their families, healthcare professionals, academic researchers, representatives of industry, key opinion leaders and others.
And although our son passed away in 2011 at age 32, his incredible courage, determination and fortitude remains the driving force behind my involvement in the international brain tumour and rare cancer communities.
What are the top three success factors of impactful association work?
Although the IBTA is of modest size in comparison to other associations, I believe that the IBTA’s work has made an impact because of our mantra: “Greater collaboration leads to greater knowledge which leads to greater hope”.
Our three success factors for impactful association work are:
- Building bridges of communication and collaboration not only across continents, but across multi-stakeholder groups and initiatives. This includes working closely with colleagues in other associations within and without the world of cancer and endeavouring to break down some of the silos which exist in healthcare.
- Listening and learning from others, and sharing perspectives, support and expertise. One of our core policies is to encourage the establishment of independent brain tumour patient organisations in countries where they don’t yet exist. These are ultimately run by individuals in those countries facing the challenges created by brain tumours who can utilise their knowledge and understanding of local cultures and requirements to work together with the IBTA towards achieving this goal. The IBTA does not seek to be proprietorial in relation to these organisations but rather to provide continuing support and collaboration.
- Ensuring that the cancer patient voice is embedded in all aspects of clinical research, treatment, care, support and health policy in an intentional, meaningful and timely way.
What should we #ChooseToChallenge when it comes to association work?
Patient advocacy associations – and acceptance of them as important stakeholders in the cancer journey – have significantly matured in the last dozen years or so. In many cases, these associations have now become frequent partners in cancer clinical research, healthcare policy and regulatory matters.
Inclusion and diversity are key in healthcare patient advocacy for the simple reason that no one is immune to disease. Cancer can be a great leveller. Cancer doesn’t discriminate by race, religion, geography or age. Everyone is a potential patient. Therefore, patient advocacy associations are becoming more representative in terms of diversity although there is still work to be done in reaching some underserved populations and improving health literacy in these groups.
Patient advocacy seems to be one field where there are also many amazing women in leadership roles.
How is the association sector dealing with diversity and inclusion? Has it changed?
One of the challenges facing patient advocacy associations is to ensure that all members of society have the opportunity to receive high-quality healthcare as a top priority regardless of ethnic origin, gender, religious affiliation, economic factors, geography or politics. Not tackling this challenge is an inhibiting factor in progressing successful outcomes in healthcare.
Fighting cancer is too important to be constrained by any such inadequacies. People should take a positive, determined role, free of prejudice, so that everyone has access to the cancer care they need.