Financial Compensation for Cancer Patients - Another Viewpoint

I wrote an essay last year about financial compensation for cancer patients when working with pharmaceutical companies and various cancer organizations. Cancer patients have vast, valuable experience, which the pharmaceutical companies and cancer organizations need. Traditionally, the patients were supposed to volunteer without pay, but now cancer patients are playing an incredible role in the collaboration and have lived longer. It doesn't sit well that the cancer patients are passively providing the service anymore. Thus, pharmaceutical companies and some cancer organizations started to pay the patients and caregivers for their services. The patients and caregivers are indeed treated like partners.

The collaboration is two-sided. Now that the pharmaceutical manufacturers and some cancer organizations have started to work as partners, it's the turn of the patients to do our part. However, it's not easy to pass our valuable experiences effectively. Thus, I believe the patients have to be trained to meet the market needs.

Cancer patients have to be trained

Cancer patients are from various backgrounds, and every cancer patient is different. Therefore, it's imperative to increase the patient advocates' ability to communicate their ideas or stories through a written and oral presentation or to analyze and evaluate information from the patient's perspective, such as involved in writing the medical guidebook in plain language for patients and caregivers, the study design of clinical trials or evaluating grant applications. For some advocates, it is natural to think critically or have learned the skill due to their profession. However, advocates still require specialized training to develop these skills.

Grateful for my various training opportunities

As I started advocacy, I always looked for training opportunities. Examples include talking effectively to newly diagnosed lung cancer patients, writing patient stories effectively, being a patient research advocate, doing political advocacy, etc. Specifically, I took part in a pilot program to train consumer grant reviewers for ASCO Conquer Cancer Foundation (ASCO/CCF) in 2021. This training program introduced the advocates from the basic knowledge of cancer to current advanced treatments, from cancer research, like the research procedures, clinical trials, statistical analysis, and grant writing skills, to drug manufacturing. In addition, well-known biomedical scientists/doctors or statisticians gave lectures. The whole training lasted about six months, and I learned a lot.

I was actively involved in the national grant reviews when I was a professor at a Canadian university in engineering. So the grant reviewing processes are similar, but through closed comparing two grant review systems of Canada and the USA, I'm impressed by the training program for reviewing process by ASCO/CCF.

Besides the broad knowledge of the training program, I was especially impressed by how the ASCO/CCF chose the advocates for review. Twenty-five cancer patients and caregivers were selected to participate in the training program. We had a video to watch, a one-hour lecture, and a set of tests in each session. It seemed no pressure on us, although I could tell that ASCO/CCF staff were watching our progress closely. At the later stage of training, about 8 to 10 advocates continued to go further to the grant mould-review training. Finally, about 5 or 6 advocates left and were selected for this year's formal grant reviews.

One thing that still puzzled me is whether ASCO/CCF have some procedure to pre-select the advocates? How were the final advocates selected? Did they prepare the training materials carefully so that the advocates were not "scared away"? In the end, I was very impressed with the final results.

At the end of the training program, I clearly felt the pressure that the ASCO/CCF expected an excellent job from us. But, at the same time, they did their part, i.e., they provided everything the advocates needed, including comprehensive training.

I've participated in three grant review programs for different Canadian cancer organizations. I have to say that the ASCO/CCF provides much more comprehensive training.

Connecting advocates with opportunities

Patient advocates go through the proper training and are ready to advocate. However, it's not easy for most patient advocates to find ways to use our lived experience in pharmaceutical companies or cancer organizations. We need to have companies that connect qualified patient and caregiver advocates to pharmaceutical companies and cancer organizations.

Savvy Cooperative is such a company that connects the patients and caregivers.¹ It’s established by patients. Its mission is to empower patients to use their experiences to create positive change. The patients directly share experiences with pharmaceutical companies or cancer organizations. The company also advocates that the patients be fairly compensated for their contributions. From my experience, the Cooperative requested information, verified them, and passed them to the pharmaceutical companies or cancer organizations. They are quite friendly.

Effective collaboration between the advocates and pharmaceutical companies or cancer organizations is critical. Proper training is crucial for the patient and caregiver advocates. Both sides need to learn to listen to each other. Savvy Cooperative, a company that connects the patient and caregiver advocates, is also an essential part.¹