My Five-Year Cancer Advocacy Journey in Patient Research Advocacy
Last updated: July 2023
I can proudly say that I’m a good patient advocate, and I enjoy it. However, after three years, a small voice inside me asked: Is that it? That’s all?
Becoming a patient research advocate
The first time I heard about patient research advocates was at a webinar where the presenter talked about patients involved in clinical trials over two years after I was an advocate myself. I was surprised at the idea and asked why and how.
However, it seemed so natural for other patients that nobody asked questions. So I decided to find out myself.
Although I hadn’t discovered why and how to be involved in clinical trials, it didn’t stop me from taking two formal training as a patient research advocate two years ago. One was given by the International Association for the Study of Lung Cancer (IASLC), and the other was from Research Advocacy Network (RAN). Each lasted about five months and covered cancer biology, research methodology, clinical trials, statistical analysis, critical thinking, communications, and grant reviewing.
Before I was in these training programs, it seemed no pressure to do advocating work, i.e., it was up to the individuals. It was the first time I felt pressure in training. Not everybody is suitable for a patient research advocate.
It took me three years to discover why patients should be involved in cancer research. Thus, I learned a big lesson: ask if you have questions.
Attending academic conferences
I attended many academic conferences, online and in person. For example, I have attended IASLC/WCLC every year since 2018, in person three times, in Canada, Spain, and Austria. This is a premier lung cancer conference with more than 7,000 researchers and doctors attending.
I also attended American Association for Cancer Research (AACR) Annual Meeting 2022 (online) and 2023 (in person). AACR Annual Meeting is the focal point of the cancer research community, where scientists, clinicians, survivors, patients, and advocates gather to share the latest advances in cancer science and medicine.1
Although online conferences have advantages, they can’t replace face-to-face communication between patients and doctors. However, fully taking advantage of in-person conferences is quite tiring.
Reviewing cancer research grants
I’m the reviewer for Conquer Cancer Grants Selections Committee in the ASCO Conquer Cancer Foundation in the USA (2022-2024). Meanwhile, I have been in the Canadian Cancer Society (CCS, 2022-), Lung Cancer Canada (2020-), and Canadian Cancer Research Alliance (2021).
In 2023, I became one of the Cancer Grand Challenge (CGC) Advocacy Panel, a global funding initiative founded by Cancer Research UK and NCI in the USA. The CGC Advocacy Panel set ambitious challenges, providing global teams with £20m to come together and think differently, aiming to make progress against cancer the world urgently needs.2
Reviewing grants can be challenging and demand time commitment, but it’s crucial to be sure that the patient’s voice has been raised and heard by researchers, even at the planning stage of research.
Being a patient partner for cancer research
Patient involvement in cancer research allows cancer patients, caregivers, and other shareholders to add their expertise and experience. I have been involved in a cancer project funded by the CCS for $7M and five years starting in 2023. I will lead the six-patient-partner team to be involved at the scientific, ethical, and human levels.3
Publishing papers on patient-oriented research
In 2023, I led a group of lung cancer patients to research coping with fear and anxiety in Canadian lung cancer patients. We conducted an online survey, analyzed results, and wrote three abstracts to be presented at conferences.
So far, one has been delivered and received well in AACR Annual Meeting 2013, CAPO2013 just accepted another, and the last abstract was submitted to the IASLC/WCLC2023.
Publishing papers is important for communicating with the cancer community. It requires coming up with research problems, carrying-out the problem-solving, like online surveys, research methodology development, reporting the results, and finding venues to present the research. Especially important is to make up a team with complementary skills.
A journey of contribution in cancer research
I finally found a place where I could contribute to cancer research on a larger scale. I was a professor, and those activities, like reviewing grant proposals, writing research papers, attending conferences, and research collaborations, aren’t foreign to me. However, it took me five years to transfer from engineering professor to patient research advocate.
Have you ever used videos as a way to advocate for lung cancer?