Evidence-based advocacy for people affected by brain tumours

Medicom interviewed Kathy Oliver, the Chair and a founding Co-Director of the International Brain Tumour Alliance (IBTA), a not-for-profit organisation that advocates for better treatments, information, support, and quality of life for people affected by brain and central nervous system tumours. She is also involved in a wide range of high-level, multi-stakeholder policy initiatives and is a frequent speaker at international neuro-oncology and cancer conferences. A former freelance journalist, Kathy has co-authored a variety of published journal articles and was one of the co-authors of the European Cancer Patient’s Bill of Rights.

Medicom: A role for patient organisations?

Oliver: The International Brain Tumour Alliance (IBTA) is a global network established in 2005 as a dynamic worldwide community for brain tumour patient organisations and others involved in the field of neuro-oncology. Many of our founders were either brain tumour patients, caregivers or former caregivers.

I am not a doctor, nurse, researcher, scientist, or politician. I used to be a freelance journalist. But one January night in 2004 and in the five seconds it took for a neurosurgeon to say to my husband and me: “I’m so very sorry, Mr and Mrs Oliver, but your son Colin has a brain tumour” I was catapulted from being a wife, a mother and a journalist to a role that I never dreamed I would play – that of a brain tumour caregiver and patient advocate.

Since then, I’ve learned more about brain tumours than I ever expected to know. I also learned, very early on, that the work of patient organisations must be evidenced-based. You need hard proof -the data, the credible information, the accurate understanding of regulatory activities and other evidence- to achieve good, sustainable, respected results in patient advocacy work.

Additionally, and as a proponent of multi-stakeholder collaboration, I’m a firm believer that there should always be a seat at the research and policy tables for patient representatives. We have an important role to play by providing our perspectives, our evidence-based knowledge and our determination to see positive change. Here at the IBTA we like to think of ourselves as bridge builders between the various stakeholders that are vital members of the brain tumour and wider cancer community. This bridge building includes creating solid, respectful relationships with members of academia, industry, regulatory bodies and the many others who are involved in the world of oncological health care.

As patient advocates, we can also lessen the burden on busy healthcare professionals by providing patients with credible, evidence-based information, and running conferences which help educate our patient and caregiver communities.

Our aims at the IBTA are to (1) help ensure better health outcomes in our patient population by highlighting what is important to patients and their caregivers [1]; (2) advocate for patient involvement in the design and execution of clinical trials [1-3]; (3) increase access to therapies; (4) create meaningful partnerships with other stakeholders and (4) reduce inequalities in care and support for brain tumour patients around the world.

With regard to this last aim, the IBTA also encourages the establishment of local and national brain tumour patient organisations in countries where they don’t yet exist. We are particularly honoured to have been involved in the establishment of the Society for Neuro-Oncology Sub-Saharan Africa (SNOSSA) which has 2 brain tumour patient advocates serving on its board. Our publications – a monthly e-newsletter and an annual magazine (of which we print 14,000 hard copies, which are sent for free to recipients in 111 countries, and we distribute them widely at medical conferences) also reflect our deep commitment to the IBTA’s aims.

Our focus is always front and centre on the brain tumour patient, their family and caregivers. And as an organisation, we are always nimble enough to be able to react quickly to unexpected challenges.

Medicom: How did COVID-19 affect brain tumour patient organisations?

One of these unexpected challenges has been COVID-19. Our evidence-gathering has had to be adjusted rapidly to not only address the “normal” issues specific to our neuro-oncology community but to now react and learn from the devastating coronavirus that has wreaked tragedy and havoc across the globe.

In April 2020, and in response to the COVID-19 pandemic, the IBTA - as part of the work of the Society for Neuro-Oncology’s COVID-19 Task Force - launched a 79-question, online survey in seven languages to assess the effect that the virus was having on the international brain tumour patient and caregiver community. The survey was sent to over 120 brain tumour charities and not-for-profits worldwide and then disseminated by them to brain tumour patients and their caregivers. The survey covered adults and children with brain and central nervous system tumours. As of the publication of this article, we are currently analysing the evidence gathered from 1,459 patients and 530 caregivers (a total of 1,989 participants) who completed our COVID-19 survey.

At the same time, the IBTA launched a second survey on “COVID-19: the brain tumour charity and not-for-profit experience” which has gathered evidence from 77 brain tumour patient organisations in 22 countries about the effects of the pandemic crisis on their work and, potentially, their futures. This survey has been published [4].

Brain tumour patients and caregivers already live with a great deal of uncertainty from the day of diagnosis. But COVID-19 brought with it to our community an additional, much-amplified, raging uncertainty.

Even before the IBTA’s evidence-gathering surveys were launched, we were hearing anecdotally that COVID-19 had profoundly affected our international brain tumour community in terms of, for example, treatment and clinical trial interruptions, deep fears about patients and caregivers catching COVID-19, concerns about the effect of the virus on people’s mental health, and a whole range of other fallout from this unprecedented and turbulent situation.

We realised immediately that to be of help to our international brain tumour community, we must act fast and collect evidence to be able to robustly identify the COVID-19 challenges, especially as there was a fast-growing body of news online about the high-velocity spread of the virus.

Apart from creating the 2 COVID-19 surveys, we also created a resource on the IBTA website (www.theibta.org), providing to all the stakeholders with whom we work a reliable, evidence-based, country-specific list of COVID-19 government guidelines covering 100 countries (see https://theibta.org/covid-19/). We provided this list very early on in the pandemic and shortly thereafter expanded the resource to include urgent brain tumour treatment information, COVID-19 information from other brain tumour charities and not-for-profits in various countries, virus advice from neuro-oncology societies, a list of free access journal articles on COVID-19, a list of information from pan-European cancer organisations and other data. Finally, we also created an evidence-based section of our monthly IBTA e-News in which we curated a range of reliable COVID-19 news relevant to our brain tumour community [5].

Medicom: Take home messages?

Oliver: Heart-wrenching challenges for the healthcare sector have reminded us all not only how precious life is and how it can hang on a thread, but also how courageous and selfless our healthcare professionals, hospital administrators, and support staff are in the face of a deadly pandemic. There is no doubt, too, that some desperately sad and utterly agonising choices have had to be made in the last few months as the world has been faced with insufficient personal protective equipment, highly damaging financial ramifications, the enforced separation of families and loved ones, and above all, the tragic COVID-19 deaths of nearly 450,000 people around the world [6].

But there have been some silver linings to the devastating COVID-19 cloud. Clever collaborations have formed between the most unlikely of partners to create new technologies in the battle against the virus. Promising developments in researching and treating COVID-19 are coming to fruition in a matter a days and weeks that would have normally taken months or years.

We are living through a unique and challenging time but there are helpful lessons to be learned from the negative and positive aspects of this pandemic. I firmly believe that evidence-based advocacy is a vital weapon in our armoury. Put evidence-based advocacy together with bridge-building between stakeholders in the brain tumour and cancer communities and you have a combination that at the same time is reliable and powerful but also incorporates those very important human characteristics of respect, care and consideration for our fellow human beings in times of crisis.

1. Addario BJ, et al (2018). Patient value: Perspectives from the advocacy community. Health Expectations, 21(1): 57-63. 10.1111/hex.12628
2. Lee EQ, et al (2019). Barriers to accrual and enrollment in brain tumor trials. Neuro-Oncology, 21(9): 1100-1117. 10.1093/neuonc/noz104
3. Geissler J, et al (2017). Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap. Therapeutic Innovation & Regulatory Science, 51(5): 612-619. 10.1177/2168479017706405
4. Amidei C, et al. The brain tumor not-for-profit and charity experience of COVID-19: reacting and adjusting to an unprecedented global pandemic in the 21st century. Neurooncol Adv. 2020 Dec 7;3(1):vdaa166.
5. https://theibta.org/news/
6. https://covid19.who.int/?gclid=EAIaIQobChMIgqC3tamL6gIVwbHtCh1QTQubEAAYASAAEgKNAPD_BwE

 



Posted on 3 February 20233 February 2023