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Patient Advocates Should Get More Involved and Engageed in Cancer Research!

I was invited to talk to graduate students in the Department of Medical Physics at the University of Toronto, Canada. These students are pursuing their master's (MSC) and Ph.D. degrees. I was told I could discuss anything related to my cancer journey. Briefly, I talked about my diagnosis, treatment, and survivorship. Afterward, I started talking about patient advocates' involvement and engagement in cancer research.

These graduate students will be cancer researchers in the near future. It's essential for both patients and researchers that patients take part in involvement and engagement in cancer research.

What does being a patient advocate involved and engaged in cancer research mean?

In the past several years, people in the USA have started this initiation. Canadians are now catching up. I believe the UK was the country to create "engagement and involvement." According to Cancer Research UK,

  • "Involvement is when patient advocates use their experiences of cancer to help shape research. Involvement is carried out with or by patient advocates rather than to or for them. Involvement enables patient advocates to have a voice that is listened to and reflected in the scientific strategy. This helps to ensure that all research, whether basic or translational, remains focused on patient benefit."1
  • "Engagement is where information and knowledge about research are shared by researchers or patient advocates with other patient advocates and the public who are not associated with their research program. The design and delivery of engagement activities provide an opportunity to involve patient advocates."1
  • My introduction to engagement and involvement

    The first time I heard about patient advocate involvement and engagement three years ago, I was puzzled. It was a new concept to me, so I asked myself, "Why?" and "How?"

    Led by curiosity

    It seemed that these concepts of "involvement" and "engagement" were so evident to others that nobody asked why and how - except me. I didn't ask because I didn't want to make a fool of myself, and nobody explained them to me. So, I started to search for the answer on my own.

    Patient involvement in clinical trials

    clinical trials through webinars and research papers. They showed me examples of the advantages and necessity of patient involvement.

    The voice of the patient reviewer

    Later, I worked as a patient grant reviewer for ASCO Conquer Cancer Foundation. During my training, the patient reviewers really impressed me. I witnessed firsthand how they helped shape cancer research. They asked outstanding questions about the clinical trials from the patient's perspective. I saw how patient advocates could be involved in clinical research.

    It's relatively easy to convince me that patients are meaningfully involved in clinical trials. But what about translational research and basic research? What can cancer patient advocates do there? It's difficult to give a convincing answer.

    A story: The researcher and the cancer patient

    Dr. James Alisson pioneered the development of immune checkpoint therapy. He shared the 2018 Nobel Prize for Physiology or Medicine. As a primary researcher, he didn't interact with cancer patients early on.

    In one of his videotapes, Dr. Alisson told a story about checkpoint immunotherapy when it was still in the experimental stage. One day, he was invited to visit the clinical trial space.

    When the bench meets the bedside

    He met a young patient, a lady, who used his checkpoint immunotherapy and was in remission. She was very emotional and thanked him for saving her life. Dr. Alisson kept a friendship with her.

    Two years later, the young lady gave birth to a baby girl. After several years, she had another baby. The patient was cured.

    The power of cancer research

    When he recalled this experience, Dr. Alisson had tears in his eyes. He talked about this lady's impact on him and his research. Dr. Alisson then encouraged his fellow researchers, especially laboratory-based researchers, to engage with trial patients. They normally don't see any patients.

    I wonder... If being involved with the patient advocates can have such an impact on Dr. Alisson's research, there must be something to say about patient advocates' involvement and engagement in cancer research.

    Understanding the power of patient involvement and engagement firsthand

    Several months ago, I went through the Cancer Research UK website and saw the definitions for "involvement" and "engagement" for patient advocates. I finally understood why patient advocates should involve and engage in cancer research. It took me three years, and it was revolutionary for me.

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