What are some of the most notable achievements from past GRASP events, and what are the plans for future events?
Maués: A number of patient-researcher connections that started during a GRASP session have continued to become fruitful research collaborations, but more important than specific projects is the fact that we are seeing a change in the way research is conducted. More and more, patients are being brought in early and often, rather than being an afterthought.
Funding mechanisms including the Department of Defense, METAvivor, the Susan G. Komen Breast Cancer Foundation, and even the National Cancer Institute are requiring that a patient advocate be involved, and it’s not just a box to check or a letter of support to sign. We are meeting with researchers regularly on projects, asking why, sharing real experiences, and making sure that research ultimately helps us live longer and better.
As for future plans, GRASP will be at a number of upcoming cancer conferences. The San Antonio Breast Cancer Symposium (SABCS) in December, the Metastatic Breast Cancer Research Conference in September, the International Biennial Congress of the Metastasis Research Society (MRS) in November, and the 2022 ASCO Annual Meeting are already confirmed.
We are also in talks with the European Society for Medical Oncology (ESMO), the ASCO Gastrointestinal Cancers Symposium, and the International Association for the Study of Lung Cancer (IASLC).
What are some of the most pressing remaining needs in terms of patient advocacy and patient-clinician-researcher connections in the cancer research space?
Maués: This is still a new area, so there are no standards in place yet. We need to define the role, the collaboration, and discuss best practices and barriers.
Another very important need is that the advocates need to represent all patients. Most advocates are White, female, retired, educated, and have higher income. That is not representative of those affected by cancer.
As we define the role and increase the number of researcher-advocate collaborations, we need to make sure that all patient populations are represented.
One important point to address in order to achieve more equity is to compensate advocates for their time. Not everyone can afford to get off work and pay for travel to attend conferences or give their time without being remunerated. If that continues to be how advocates are involved, we will see larger disparities.
For clinicians and researchers who are interested in getting involved with or referring patients to GRASP, what would you advise?
Maués: They should join our database of researchers and patient advocates, which can be found at GRASPCancer.org/join-us. We email our members every time we offer the program at a conference. Those interested may also email us at [email protected] with any questions.
This interview was edited for clarity.
A related interview with Marlena Murphy, a patient advocate who has attended GRASP events, can be read here.
This article originally appeared on Cancer Therapy Advisor