A patient-led initiative is connecting cancer patients with clinicians and researchers, allowing these parties to exchange ideas and learn from each other, according to the co-founder of the initiative.
Guiding Researchers and Advocates to Scientific Partnerships (GRASP) was founded by 2 breast cancer survivors with the goal of opening up communication about cancer research.
GRASP events take place at cancer conferences and are intended to bring researchers, clinicians, and patient advocates together for personalized discussions about scientific presentations.
Several virtual GRASP sessions were offered at the 2021 American Society of Clinical Oncology (ASCO) Annual Meeting, and more are planned for upcoming meetings.
We interviewed Julia Maués, a metastatic breast cancer survivor and co-founder of GRASP.
What prompted the idea to create GRASP, and what gaps was it intended to address?
Maués: GRASP was created from an actual experience that a patient and researcher had at the 2019 ASCO Annual Meeting. GRASP co-founder Christine Hodgdon, a metastatic breast cancer patient and advocate, was walking around looking at the immense lines of posters set up at McCormick Place.
When she ran into a friend and cancer researcher, Corrie Painter, PhD, they decided to walk and check out posters together. [Dr Painter is associate director of operations and scientific outreach in the cancer program of the Broad Institute in Cambridge, Massachusetts.]
What happened next was what GRASP is all about: They exchanged ideas and learned from each other. Sometimes, Corrie would teach Christine something. For example, when she said, “Wow, that’s a beautiful survival curve!” and Christine asked, “What does that mean? How do you know that from just looking at it?” and Corrie explained how Kaplan-Meyer curves worked.
Other times, it was Christine who had knowledge to share, like when she said, “Oh, look at this poster, talking about drug X, which we patients have a diarrhea nickname for, because it causes such bad diarrhea that patients cannot leave their house while on it.”
While diarrhea was one of the many possible side effects listed, Corrie wouldn’t know how bad it was or how patients’ lives are impacted if she hadn’t heard it firsthand from an actual patient.
We are strong believers that while patients have much to learn when it comes to cancer research, they also have knowledge to share. Clinicians are experts in treating people with cancer, and researchers are experts in the science of cancer, but patients are the experts in living with cancer, and that expertise is invaluable.
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@example.com with any questions.
This interview was edited for clarity.