How advocacy is placing the patient voice at the center of medical conferences

Jun 27, 2018
How advocacy is placing the patient voice at the center of medical conferences

Medical conferences have traditionally been the preserve of researchers, scientists and doctors, but in a patient-centric world, there is a growing role for advocates. From injecting proceedings with the patient voice and educating physicians on unmet need to working collaboratively to advance care and disease management – there’s a lot to be done.

Wendy Poage, President of the Prostate Cancer Education Council (PCEC), has recently returned from a busy few days at the American Urological Association’s 2018 Annual Meeting (AUA2018). She talks to Change Together about how taking part has helped her group further its aims.

Tell us about the Prostate Cancer Education Council

We were founded in 1989 by a group of key opinion leaders in the prostate cancer space who wanted to promote early diagnosis of prostate cancer.

Early detection is still critical to our underlying mission, but we now focus much more on awareness and education. We also work hard to educate patients and caregivers, as well as nurses and physicians, on current advancements in the therapy area.

Our main mission is to ensure patients get access to the therapies available to them at the time they would be most impactful.

How does attending events such as AUA2018 help PCEC achieve its goals?

PCEC runs physician education programs at AUA, which enable us to not only improve awareness and knowledge but also to share news of cutting-edge topics that are critical in the space. We also provide men’s health testing to physicians and industry partners during the meeting, because it’s important to remind each other to take charge of our health and practice what we preach about prostate cancer. Finally, we get to connect with other advocacy groups to look for meaningful collaboration opportunities.

All these activities raise awareness of our organization and services – we work closely with physicians and industry partners and are thankful they refer so many patients to us and work with us to host our educational events.

What role do patients and patient advocates play at meetings like AUA2018?

Advocacy is important to professional societies like the American Urological Association in many different ways. We have been attending the AUA for more than 20 years and it’s remarkable to see the difference in the advocacy participation meetings over the years.

This year, the AUA hosted the fifth annual Patient Advocacy Hub. It’s a forum where different advocacy groups across therapeutic areas can share information on their services among physicians.

PCEC booth
The PCEC booth at the AUA2018 Patient Advocacy Hub

One of the most astonishing things this year was how many different patient advocacy groups participated at the meeting. Twenty years ago, there were three advocacy groups present, but this year we had a room filled with nearly 40 people, representing different advocacy groups, at roundtable discussions.

Why is it important for advocacy groups to connect with other healthcare stakeholders?

History has shown us that we are successful when professionals, patients and advocacy groups come together. If we want to accomplish our goals, we need to work with our peers at a variety of different types of organizations. We can provide the best medicine for patients if we have each of the key stakeholders in healthcare in the same room, talking consistently and honestly.

At this year’s AUA, it was obvious that there are a lot of new people and new advocacy groups we can collaborate with. Collaboration with advocacy groups in completely different disease areas is effective, impactful and important.

What was the standout session of AUA2018?

David Crawford, MD, Professor of Surgery and Radiation Oncology at the University of Colorado and Chairman of PCEC, spoke about the changes to the United States Preventive Services Task Force (USPSTF) recommendations for PSA screening. These were changed from a D – do not order – to a C – offer for selected patients – just a week before AUA2018.

There is so much confusion over PSA, and the talk broke it down. Dr. Crawford explained that moving the PSA threshold from 4 ng/ml to 1.5 ng/ml was a simple, easy-to-understand cutoff point for medical professionals in different specialties, such as primary care. He clarified that what happened after an abnormal result, i.e., a biopsy and potentially treatment, should be a shared decision with the patient.

Those of us in the advocacy space have been calling for a change in the USPSTF recommendation for years, Dr. Crawford’s plenary talk hit home why it was needed and why we have been fighting for it and additional changes that need to take place.

Click here for more on the work of the Prostate Cancer Education Council.

How advocacy is placing the patient voice at the center of medical conferences

Wendy’s experience includes leadership positions in several national and international non-profits, an academic oncology cancer clinic, private practice settings, and oversight of large government and private clinical trials.  Her unique expertise and areas of interests include enhancing knowledge on the multidisciplinary approach to healthcare, maximizing patient outcomes by enhancing physician–patient communication, medical research and overall survivorship issues.

 

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