How I got obsessed with PPI activities
The first time I came to hear about the term “Public and Patient Involvement” or “PPI” for short was in 2016. Professor Amanda McCann of UCD spearheaded the Patient Voice in Cancer Research (PVCR) initiative which aimed to actively engage those touched by cancer. Under this program, cancer patients, cancer researchers and others (patient advocates, families, carers, healthcare professionals and policy-makers) could get involved in discussions and decision-making processes that positively impact the cancer research landscape and outcomes for patients. In September of that year, my boss, Professor William Gallagher, asked me to show our lab to a group of patient representatives. As a former clinician turned full-time researcher, I had no idea that patients could be involved in laboratory research. We used to use patient’s samples given to us by our clinical collaborators, but that was where the connection stopped.
As part of this PVCR initiative, a group of cancer survivors came to visit our lab at Conway institute, UCD. During this visit, patients and patient advocates were shown what happens with the samples that they or their relatives have donated for research and how we use these materials for our day-to-day experiments. Very nonchalantly I agreed to take up this task, as I never say no to my boss! Four women visited our lab, some of whom had recently undergone chemotherapy and were donning scarves on their heads, still visibly living with some of the after-effects of their treatment. My heart sank as I described the experiment I was going to perform on that day with that tissue sample, how researchers use tissue samples to discover cancer biomarkers. The feeling that this piece of tissue might have come from one of these women standing in front of me hit me hard. At that moment, I realized I had never treated a tissue sample as if it had come from an individual (I might as well be facing one of them). Doing laboratory-based research made me so out of touch with patients that my sole thinking until then was my own personal development, which had nothing to do with patients. I was not aware of my responsibilities as a researcher, I had no sense of gratitude to the patients for the tissue sample that they graciously donated to us to help us better understand cancer. At that time, I was dreaming of a permanent job in academia, showing off scientific findings at international conferences, and climbing the career ladder. The sense that I was doing something that could impact someone’s life was not in my mind until then.
Looking forward from my first experience, I have not missed an opportunity to attend a PPI event. My experiences to date have included explaining science in simple terms to audiences outside the scientific community, showing visitors how a lab works, and making people aware of cancer and cancer research. Over the course of several years working with UCD's PPI program, I noticed that there are no patient representatives from ethnic minorities in any of the programs I attended. I thought there must be patients from ethnic minority communities, why they are not in the program?
Since I myself am a member of an ethnic minority group, I realized that not only are these patients not among the cancer patients' representative groups that participate in outreach programs, but a large portion of our community may be misinformed about cancer due to significant barriers and misinformation. Understanding cancer within ethnic minority populations is a multifaceted issue that requires careful consideration. Cultural beliefs, language barriers, and limited access to healthcare services often shape their perception and comprehension of this complex disease. Ethnic minority communities may have unique cultural interpretations of cancer, including spiritual or traditional beliefs that influence their understanding and treatment-seeking behaviours. Moreover, language barriers can impede effective communication between healthcare providers and patients, hindering the dissemination of vital information about cancer prevention, early detection, and available treatment options. In addition, socioeconomic disparities and limited access to healthcare services further compound the challenges faced by ethnic minority populations in obtaining timely and appropriate cancer care. To address these disparities, it is essential to develop culturally sensitive education campaigns, increase language support services, and improve access to affordable and quality healthcare resources, ensuring that all individuals, regardless of their ethnic background, can navigate the complexities of cancer with informed understanding and support.
An opportunity arose in 2020, due to my ethnic and religious background I had connections to both Bangladeshi and Arab communities here in Ireland. Through Precision Oncology Ireland (POI), supported by SFI, we co-developed a programme of events with two minority ethnic community groups in Ireland: a Bangladeshi community group, and an Arabic Muslim community group. We named the program ‘Invisible Spectrum’. Ethnic minority groups can be ‘invisible’ in the cancer research landscape - most research studies in the field of cancer and genetics have been focused on white Caucasian populations, and minority groups such as Southeast Asians are significantly under-represented. Invisible Spectrum engages with minority communities with the goal of informing, inspiring and empowering community members to become active participants in the national conversation on research and science. At these community-focused multi-lingual event, members of ethnic minority community groups met scientists working at the cutting-edge of cancer research in Ireland. Participants discovered how doctors decide what treatments to give to cancer patients, and how cancer research helps them to navigate this decision. Participants also learned about cancer screening and how to be aware of cancer symptoms, with a translator and an Irish Cancer Society nurse on hand to respond to any queries or concerns.
Before the event, we engaged with the key social leaders of these communities to discuss the format of the events. Our events were meticulously planned to make sure it meets the expectations of the participants. In 2020, during our first program, we aimed to reach out to the Bangladeshi and Arab Muslim community, especially to the elderly female members. Many of our female community members practises Purdah. The Purdah practice is a traditional cultural and religious practice observed by some Muslim women to maintain modesty and privacy in the presence of unrelated men. While the practice varies across different Muslim communities and regions, it is generally a personal choice made by women to uphold their religious and cultural beliefs. Due to this Purdah practice, maybe many of these female community members feel uncomfortable to disclose their early signs and symptoms of many diseases including cancer to a male GP. They might face language barriers also in explaining their health issues appropriately.
We aimed to address these issues in our 2020 program. All talks were translated to Arabic and Bengali; we organised female only session, presented, and participated only by the females. In the feed back notes, they praised the event and wanted more of this from us!
For 2021, Invisible Spectrum 2.0, was built upon the success of the previous event that aimed to produce a deeper engagement with the ethnic minority community of Bangladeshis in Ireland. This time, we aimed to re-engage the members of this community on the topic of cancer genetics (including references to DNA, cells, and cancer) under the banner “Invisible Spectrum-My DNA, My Health”. The ultimate ambition for Invisible Spectrum 2.0 was to develop a template for engaging minority communities with complex research topics such as genetics of cancer. Dr. Terri McVeigh, a consult clinical geneticist from Royal Marsden hospital explained risk of genetic diseases specially cancer in such simpler terms where I translated every word of hers to Bengali for the community members. During this program, eminent cancer researcher such as Prof. Walter Kolch, Prof. William Gallagher also spoke about genetics in cancer, their talks were also dubbed in Bengali so that everyone in the audience understand what was being discussed. The feedback from our attendees was great, this was a successful program again!
After two consecutive online successful programs engaging with minority community, we delivered our 2022 program face to face. We had a fantastic organising team; the minute detail of the event was scripted, and we all did our parts accordingly. We invited around 100 Bangladeshi community members to Invisible Spectrum 3. The event was held on Saturday, 19th November. Our 3rd annual event, this was the first time that we could hold on in-person event thanks to easing of Covid restrictions and financial support from Science Foundation Ireland. Featuring talks from researchers, separate breakout sessions for men and women, networking and discussion opportunities and even a cell biology focused art workshop for children, the day was a huge success.
Engaging with ethnic minority groups in Ireland for cancer awareness program can be challenging at times. As an organiser, besides being respectful to cultural sensitivities, one has to know how to approach the community members for such an event and how can one reach out to a wider targeted community groups by engaging with key social leaders. Moreover, we constantly worked on new ideas how best we can target key groups within these communities. We knew we wanted to have the opportunity to reach all members of the family, and to do so all had to be catered for. In order to make sure everyone had the same chance to attend the event, a dedicated children’s room was set up with activities so that Mums and Dads could attend our talks freely. These young families often would not have the luxury drop the kids at grandmas before coming to the event on Saturday, so we provided supervised child care for two hours with drawing/painting session in a nearby room, while the parents attended gender specific cancer awareness sessions.
Cancer awareness programs play a crucial role in ethnic minority communities, highlighting the importance of early detection, prevention, and access to healthcare services. These communities often face unique challenges when it comes to cancer, including language barriers, cultural stigmas, and limited knowledge about available resources. By raising awareness, these programs can empower individuals within these communities to recognize the signs and symptoms of cancer, understand the significance of regular screenings, and make informed decisions about their health. Moreover, they foster a sense of solidarity and support, breaking down cultural taboos surrounding cancer and encouraging open conversations about the disease. Ultimately, cancer awareness programs among ethnic minority communities can save lives, reduce health disparities, and promote equality in cancer prevention and treatment.
Cancer research is not typically a patient-facing discipline, but in the new era of precision medicine, it is more important than ever to involve patients in our research and gain their perspective on the challenges we face.
About the Author: Dr Arman Rahman is an assistant professor at UCD School of Medicine and Translational Research and Engagement Manager for POI. He manages the POI Tissue Imaging Platform as part of work package 4.4