I was one of the panelist today in Memorial University’s “How Public Engagement Makes Research Better: A Research Week-Engage Memorial webinar“, a public event organized as part of the Research Week.
I loved being in this panel, listening to participants and other panelists, and addressing questions and comments.
Reflection – naturally – has ensued.
I am new to undertaking significant roles in public engagement. My first idea materialized in 2019, with a Quick Start Fund I received to organize the Public Conference on Genetics in 2020. Once I realized how impactful and successful this event was, there was no returning back for me.
In the following year, I created the Public Interest Group on Cancer Research, together with other founding members. It has been going successfully since 2021. We are a new group, but we are a mighty group.
So far, we have identified the key interests and priorities of the cancer community in NL; organized a very successful Public Conference on Cancer; published a scholarly article in an international, peer reviewed journal; presented our work in two scientific conferences; and disseminated knowledge and advocated for others going through cancer via our website, local media interviews and articles. We also designed a research study based on the identified priorities, which awaits for funding.
When I was asked what was the most impactful gain by the public partners in our group so far, two things came to my mind:
- to be heard
- to help others going through cancer
What else, I wonder? One thing that I may want to ask our patient partners.
There was also a question about how public engagement has changed my research.
Public engagement did change how I do research a lot! 🙂
I now focus on what is most important for patients and families, not what I think are important for them.
The individuals affected by a condition or situation are the experts of the lived experiences. For example, in cancer, cancer patients, caregivers, and family members they know how it is to live with the cancer diagnosis, treatment, trajectory, or end of life. Their partnership and stories have given me quite an insight.
Thinking that we as academicians, researchers, clinicians, or leaders know what is best for our patients, we are probably wrong. I also find it patronizing now.
In terms of how we approach communication regarding cancer has been also influenced by our partners. One patient partner said something along these lines that I always remember: “We should have hope that one day there will be a cure for cancer”.
Bringing hope and emphasizing the tremendous progress in cancer control and treatment is one thing that I integrate in my knowledge dissemination activities and interviews. It is a very powerful approach, considering that cancer is often a feared disease. We all need some hope that one day this disease will lose its power over us – it will become curable, less impactful, and less fearsome.
The Public Interest Group on Cancer Research meshes public engagement and patient-oriented research elegantly.
I am so happy for this and I am so proud of being a part of such a powerful public partnership. Together with 13 cancer-affected public members and three of my colleagues, we diligently and enthusiastically work to improve things, lived experiences, and conditions of cancer families, starting in our province.
Sevtap Savas, PhD. St. John’s, Newfoundland and Labrador, Nov 22, 2022
– To be continued –