ASCO – bringing the patient voice to the medical community

Jun 29, 2018
ASCO – bringing the patient voice to the medical community

The patient voice has become ever more ingrained into all aspects of oncology care in recent years – taking its place in everything from trial design and drug development, to clinical care and scientific meeting planning.

Meghan Gutierrez, Chief Executive Officer at the Lymphoma Research Foundation (LRF), tells us how this paradigm shift has affected the role of advocacy groups at events like June’s annual meeting of the American Society of Clinical Oncology (ASCO).

Firstly, can you tell us about the LRF’s work?

Our mission is to eradicate lymphoma and serve all those touched by this disease. We seek to empower patients, survivors and their loved ones to have the knowledge they need to become their own healthcare advocates. We provide education programs across the United States and have long been a leader in funding biomedical research.

Our work is guided by our scientific advisory board which comprises 45 of the world’s leading lymphoma experts who help guide the research portfolio and serve as advisors for the education program.

To date, we have awarded more than $60m in lymphoma research and served more than one million people every year through education programs, research and support services.

How does ASCO help the LRF achieve its mission?

The meeting is an important opportunity for researchers, patient advocates and regulators, as well as members of the manufacturing and drug development industry to come together to share the latest research findings.

It allows all these diverse stakeholders to come together to focus on the needs of patients and the progress we are collectively making on their behalf.

How does ASCO help the oncology community focus on patients’ needs?

We have started to see a paradigm shift in oncology. The patient perspective is being incorporated into drug development, clinical trial design and even critical care, and ASCO’s programming has reflected that.

It’s really encouraging to see patient-centeredness being ingrained into cancer research and care. This was also evidenced by the increase in clinical trials that incorporate patient-reported outcomes. That’s a marked change from what we would have seen 10 years ago.

As the treatment landscape continues to evolve, the need to better understand the needs of patients is critically important. Meetings like ASCO provide a wonderful opportunity to do that and bring together the multiple viewpoints that are so important to informing clinical research.

How have changes at ASCO assisted patient advocacy groups?

We applaud ASCO’s commitment to incorporating the patient voice and experience. The meeting offered a wide range of opportunities for advocates to gain critical knowledge and showcase their mission among the oncology community.

ASCO offered advocacy groups discounted conference rates, enabled us to exhibit in the Patient Advocacy Pavilion and provided us with a special lounge on site where we could work and network. These might seem mundane, but it’s rare in the world of scientific meetings for advocacy groups to be accepted and prioritized in that way.

Why should advocacy groups take part in meetings like ASCO?

All stakeholders and partners in oncology have incredible influence, but there is far more to gain in collaboration. That can only be achieved through sharing our strengths, viewpoints and information during events like ASCO.

By working together, we can foster scientific advances and translate these into the clinical setting. These meetings are a conduit to making critical collaboration possible.

This is an incredibly exciting time in oncology. As innovation continues to flourish, it’s important for organizations like ours to engage in dialogue and to keep pace with scientific discovery.

Our goal is to make sure the right patient receives the right treatment at the right time, which is why we need to ensure they have all the information they need to make the best decision possible.

ASCO is an intense week, but the LRF team returned to our office with renewed energy and vigor to pursue our mission by bringing all the information back to the patients we seek to serve.

ASCO – bringing the patient voice to the medical community

Meghan Gutierrez is the Chief Executive Officer of the Lymphoma Research Foundation, the nation’s largest nonprofit organization devoted to funding lymphoma research and education, advancing both the study of new cancer therapies and improved patient care.

A government relations and health care policy specialist, Meghan has pursued an array of public policy issues during her career, ranging from mental health parity and rare disease awareness to medical technology and the treatment of chronic disease. Following her work as a Congressional staff member for one of the U.S. House of Representatives’ foremost leaders on health care policy, she served as a health policy and communications advisor for several national nonprofit and educational institutions, including Columbia University and the Partnership for a Drug-Free America.

Meghan joined the Lymphoma Research Foundation in 2008 as its chief program, policy and communications officer. She was a driving force behind programs such as the country’s only Adolescent and Young Adult Lymphoma Initiative and Lymphoma Clinicals Research Mentoring Program, and development of the first mobile app for people with lymphoma. She became Chief Executive Officer in 2014. In this role, Meghan represents the Foundation and the lymphoma community before numerous audiences, including the U.S. Congress, Food and Drug Administration, National Institutes of Health, pharmaceutical industry and health insurance payers. She has written and lectured extensively about the needs of cancer patients and served on committees and panels of the American Society of Clinical Oncology, American Society of Hematology, Institute of Medicine, and National Cancer Institute, among others.

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