ASCO: A leap forward for patient advocacy

Jun 22, 2016
ASCO: A leap forward for patient advocacy

Wendy Selig, founder and CEO of WS Collaborative, says this year’s American Society of Clinical Oncology (ASCO) annual meeting took great strides for patient advocacy organizations.

Has ASCO done anything different this year that has been more inclusive in regard to patient advocacy groups?

I’ve been coming to ASCO for seven years and each time it seems like the meeting is more acceptable to people working in patient advocacy. Partly this is because they have expanded the program, and partly because I am more comfortable with how to leverage the opportunity.

Fundamentally, ASCO is a scientific and clinically focused meeting, but there are events to leverage the multistakeholder presence. Virtually every pharmaceutical company hosts a patient advocacy event – some focused on company-specific pipeline information, others on the broader themes of patient engagement and clinical research. There’s a lot on offer, so it does require a certain level of sophistication to figure out how to maximize the opportunities.

How much visibility do patient advocacy groups have at ASCO?

There is a strong focus on visibility for patient advocacy organizations, with an area of the exhibition hall dedicated to patient advocacy groups. Having this focal point presents an opportunity to publicize your organization, its mission and focus, but also to connect with clinicians and people in industry. It’s a great networking platform.

Are there other opportunities that might encourage patient advocate attendance?

There are a variety of programs – or scholarships – to bring patients and patient advocacy organization representatives to ASCO. There’s also a designated hub for the advocacy community to meet.

In terms of the conference itself, there is a track you can pursue if you don’t want to get lost in the deep science, and ASCO creates publications designed for multiple audiences. In addition, the Food and Drug Administration (FDA) conducts several meetings with advocates, which is a good opportunity to connect with regulatory folks.

Was the patient more at the heart of this meeting than previously?

Although the bulk of the program is based on data presentations and peer-reviewed publications, patient centricity, the patient voice, and what patients most want and need, is at its heart.

The theme of this year’s ASCO was “Collective Wisdom: The Future of Patient-Centered Care and Research,” which to many means multiple voices collaborating in the fight against cancer, including patients and their advocates.

Vice President Joe Biden also spoke about the “Cancer MoonShot 2020” program, which seeks to accelerate the potential of combination immunotherapy in cancer, and talked about his personal loss after his eldest son Beau died in May last year. This served to highlight that ultimately all the data and statistics come back to the same thing – individual people and their families.

What were the key take-home messages from this year’s conference?

Around one-third of all the abstracts presented at ASCO this year related to immuno-oncology, which is quite remarkable, while other hot topics included biomarkers, personalized medicine and combination therapies.

There was also tremendous enthusiasm and investment in innovation from the private sector, which was good to see.

How should patient advocacy organizations translate the learnings for their particular audiences?

Groups who make the investment of time and resource to be here should think about ways they can share the learnings with their constituencies. Whatever you can do to distil the complex clinical and scientific information presented and make it accessible is a good thing.

In addition, patient advocacy groups now have scientific advisory boards – key opinion leaders, clinicians and scientists – who can help evaluate what it means for patients and identify the elements they think are most relevant to the community

What would make ASCO even better next year?

With 30,000 people attending it can be overwhelming, so in order to make it an even more meaningful experience for patients and patient advocacy organizations, it would be good to consider a pre-training element around how to make the most of the conference. What’s the difference between an educational session, a plenary session and a ticketed session, who comes to ASCO, and what are your opportunities when you are there?

What would be your top tips for attending ASCO?

You need to have a strategy, you need to have priorities, you need to plan, you need to have meetings scheduled and defined, so you can make maximize your time and map out your conference journey. Finally, some delegates recorded in excess of 16,000 steps a day on their fitness trackers, so ASCO is certainly not for the faint of heart. Or high heels!

ASCO: A leap forward for patient advocacy

Author

Wendy Selig is founder and CEO of WSCollaborative, a firm that focuses on defining and implementing strategies for establishing winning cross-sector collaborations in healthcare. She has worked at the top levels of government and within the leadership of the nonprofit health sector, including the Melanoma Research Alliance (MRA), the American Cancer Society Cancer Action Network (ACSCAN), the National Cancer Institute (NCI), One Voice Against Cancer (OVAC), and the U.S. House of Representatives. She is currently president of the National Coalition of Cancer Research (NCCR) and a member of the board of directors of the Rising Tide Foundation for Clinical Cancer Research (RTFCCR).

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