Over the past several years there has been an effort to increase involvement of patient advocates when decisions are being made related to how to support cancer research and care. Is this really helpful? After all, those of us involved professionally in cancer research and cancer care also consider ourselves patient advocates. We have all been touched by cancer personally. I lost both of my parents to cancer—my mother when I was still in high school. I have absolutely no doubt that my colleagues and I have the patient’s best interest at heart.
What I have learned is that there is great value in having seats at the table reserved for individuals who are focused on nothing but advocating for the patient.
Advocates bring life experiences and a perspective that is different from those of us who have spent years in biomedical research and patient care.
Even if the advocates say little, their presence reminds the clinicians and scientists around the table of why we are all there.
In Hans Christian Andersen’s story “The Emperor’s New Clothes,” it takes an individual with no preconceived notion (in his story, a child) to point out the truth that the emperor is wearing nothing at all. Good patient advocates don’t hesitate to speak up if they believe there is something important the professionals around the table are hesitant to raise, or that has not been noted for some other reason.
I don’t use this story to suggest those of us making decisions related to cancer are metaphorically buck naked or otherwise self-delusional, only that it helps to have input from someone who is perceptive and is willing to speak up when something important needs to be said.
Here is a brief description of some of the contributions from advocates whom I admire.
- Lorraine Dorfman (Iowa Advocate for the Iowa/Mayo Lymphoma Specialized Program of Research Excellence) helped us at a research meeting as we struggled with the ethics of using patient samples for research that might result in a discovery that might be of financial value to a research partner.
- Ben Haines (Mayo Advocate for the Iowa/Mayo Lymphoma Specialized Program of Research Excellence) has taken on crowd fundraising for our lymphoma research program with incredible energy and passion.
- Nancy Roach (Advocate from Fight Colorectal Cancer) spoke out at a national advisory committee meeting about the importance of investing federal research dollars in research that is most likely to have the greatest positive impact on patients.
I look forward to continuing to work with patient advocates in a broad range of activities at the Holden Comprehensive Cancer Center and at the national level. Seeking their input before stepping out with a plan or a decision gives me an additional level of confidence that the important matters have been covered appropriately.
George Weiner, MD
Holden Comprehensive Cancer Center Director