The echoes from the American Society of Clinical Oncology (ASCO) annual meeting, the world’s biggest cancer conference held from June 3-7, can still be heard. Around 38,000 attendees, predominantly doctors, researchers and the media, were gathered at the huge McCormick Place convention center in Chicago seeking out the latest news in medical innovation.
But if you listened a little closer to the sounds coming from Lake Michigan this year you would hear another sound – that of the patient advocates making their voices well and truly heard.
Medical conferences across different therapeutic areas, with ASCO being one of the biggest, were traditionally strictly off-limits for patients, with scientific presentations focused firmly on the healthcare providers and industry personnel in attendance. In this environment, the risks and benefits of new classes of treatments were not immediately visible to the patients themselves and the information would take time to filter down through to them via medical practice.
Now, researchers and the pharmaceutical industry see patients as partners for clinical trials, rather than passive participants, with one top industry executive at ASCO reflecting that the patients are now being asked what they consider to be a significant adverse event, rather than just relying on the statistical trial data. This paradigm shift is also being reflected in the structure of the ASCO meeting, with the theme for this year being “Collective Wisdom: The Future of Patient-Centered Care and Research.”
ASCO president Julie Vose said, “By concentrating our efforts around the patient’s needs for cancer treatment, supportive care, as well as survivorship care, we will be able to learn from every patient today in order to help the cancer patients of tomorrow.”
There were patient advocacy groups all over the Windy City for ASCO. At an event in the stunning Chicago Symphony, Diane Fine of Metastatic Exchange To Unleash Power (METUP) revealed that meetings such as ASCO are absolutely invaluable for groups like hers, giving them access to the top scientists and the opportunity to meet up with researchers who are collaborating with their organization.
However, what was really interesting is that the patient voice was being heard loud and clear within the halls of the conference. As you entered the cavernous exhibition hall, the first thing to see was the ASCO-sponsored patient advocacy booth where 28 associations were displaying materials and exchanging information with attendees.
Stephanie Chisholm, director of education and research at the Bladder Cancer Advocacy Network (BCAN), said from her booth at ASCO that it is clear the society “has made a commitment to patient advocacy” over and above other organizations. She added, “The fact we are here in the exhibit hall is a pretty big deal because thousands of people see us.”
Attending ASCO in this capacity, Chisholm says, puts BCAN in front of several doctors who had approached the stand and enabled her to share experiences and information with the other groups in the patient advocacy booth.
Patients also received complimentary access passes to attend sessions, while a number of other benefits were on offer, such as scholarships to help cover travel, hotel and registration expenses.
It’s tiring work going around ASCO but, if you needed a break, there was also the patient advocate lounge. Here, the chance to imbibe some much-needed refreshment was supplemented by the ability to satisfy your appetite for networking with other patient advocates from all over the world, all discussing the latest advances and sharing their perspectives on them, rather like the medical community has done for many years.
The question is whether these are small steps or giant strides for patient advocacy. In isolation, these may not seem like much, but for patient advocates the way in which US medical associations like ASCO now see the patient as being central to everything, and reflect this in their meetings, is clear evidence of exciting progress. Hopefully, it is something that will be evident at every meeting in the future.