Conferences: What can be said about them? They are absolutely necessary for challenges, progress, and outcomes that will contribute to better evidence-based treatment for patients.
One major issue, however, is the number of hours required to attend; the days are packed with sessions starting early and running nonstop well into the evening. When travel time and the possible crossing of time zones are considered, the impact on attendees is troublesome to me. How can an exhausted individual retain much from a session requiring concentration and focus? As a layperson, I was astonished at the pace maintained by healthcare professionals, which I wrote about previously (see “The Pace of Medicine” in the February 2013 issue of The Oncology Nurse-APN/PA). I wondered what could be done to ease the toll that attending conferences must take on healthcare providers and researchers, who are already strained with the demands of their important work.
Although I attempted to avoid overloading my own schedule before and certainly during these conferences, I observed the understandably tired faces in the audiences—as well as the constant responding to texts, calls, and emails (you know the program). How much can participants learn or recall from these sessions?
In the exhibit hall at the American Association for Cancer Research conference in 2013, an individual placed a flyer in my hand and said, “Perhaps this might be of interest to you as an advocate?” We had not discussed my observations in any way in our conversation, so as I glanced down at the flyer, I was taken aback by its content. Over the years, I have learned to pay attention when coincidences happen in my life, and here was an excellent example:
ESCAPE, a program of BAG IT Encouraging and Sustaining Cancer Advocacy Programs and Efforts
Cancer Advocacy Leadership Conference Sunday, August 18 – Thursday, August 22, 2013 Tucson, Arizona
ESCAPE brings together cancer advocates from around the country to:
The agenda includes plenary sessions, interactive workshops, and informal neworking groups.
This is a small conference by design and a limited number of spaces are available.
Yes, most details read like the typical conference design, but several items caught my attention: burnout; integration of mind, body, and spirit for balanced living; and the location of the conference, Miraval Resort, Tucson, Arizona (one of Oprah’s favorite things!).
BAG IT (http://bagit4u.org/), the sponsoring organization, and Sherri Romanoski, its founder and president, who was the visionary of the ESCAPE program, celebrated the organization’s 10th anniversary last year. Created “by survivors for survivors,” BAG IT was established to fill a need in the community to provide immediate quality resources to those newly diagnosed with any type of cancer. Members designed a bag to hold helpful, informative publications and a personal navigation binder to assist people during their treatment journey and beyond. The organization has grown to serve the entire state of Arizona, reaching over 45,000 people to date. Surgery, radiology, and oncology offices; hospitals; clinics; and tribal health and resource centers distribute the bags across the state. The collaborative effort between BAG IT and healthcare providers has resulted in a system change in patient education.
I felt lucky to be selected to attend, and Sherri’s letter to me showed the depth of her understanding of the stress of modern-day living and the demands of the pace of medicine and advocacy efforts. She wrote:
“We invite you to participate fully in both ESCAPE programming and the activities offered by Miraval. It’s an opportunity to explore personal growth, valuable networks, and stimulating ideas. Being a cancer advocate is hard work. Some days, it’s downright exhausting, frustrating, and overwhelming [though I think this describes how our healthcare providers and researchers must feel on a more regular basis]. We designed ESCAPE to help you learn new techniques to strengthen your programs or efforts, meet others you can reconnect with later, and offer an opportunity to rejuvenate your body, mind and spirit. We believe it is a unique program for unique individuals.”
I and 24 other cancer patient advocates from across the country were pampered with tender loving care at Miraval. We were provided ample time to book Miraval activities around the ESCAPE schedule, which was organized in a comfortable flow. Most mornings were kept open to allow each advocate to take personal time. This schedule seemed to support the conference sessions going well into the evenings without the participants feeling any strain. The wonderful transformation of each of the advocates during the conference bears witness to the effectiveness of the ESCAPE program!
You might start thinking that this was just an escape from the daily grind, but sessions presented during the conference were about strategic planning, fundraising, attracting volunteers, and legislative actions and included keynote addresses such as Resilience, Optimism and Hope in Cancer Survivorship; Deep Roots: Strong Trees; and Putting Down the Masks: Triggers, Truths and Authenticity.
Remarkably, cell phone use was not allowed during the sessions or workshops. Everyone was relaxed, attentive, and alert in the sessions, which struck me immediately. In addition, cell phone use was allowed in only a few public areas of the resort and in private rooms.
For those attending scientific conferences at which the sessions start at 8:00 AM and go through full days and well into the evening, the pace never lessens. While it is extremely rewarding to participate and represent the patient community, the energy expended can certainly take its toll on most people, especially cancer survivors.
Having the gift of ESCAPE was a blessing, and I cannot thank BAG IT and Sherri enough for their vision and the sponsors—Eisai, Miraval, Genentech, and Ventana Medical Systems—for supporting the health and welfare of patient advocates who work tirelessly across this country. What they accomplished with the creation of ESCAPE might become a template for the medical and scientific communities. Their members would benefit greatly from such an amazing experience. Not only did I feel more rested and refreshed, while there I also felt more alert and more able to participate, learn, and benefit from the terrific working sessions!
Could this be an answer to my question as to how to support not only the advocacy community but healthcare providers and researchers as well? Could this be a dynamic paradigm shift regarding how conferences could be designed to better support individuals on all levels, enhancing the health as well as the education of attendees? Could my writing this article plant some seeds in the minds of the medical and scientific communities for a new form of conference scheduling?
Although it is true that not all conferences can happen at resorts, perhaps incorporating some aspects of this conference into other conferences could enhance the experience, reduce the strain on individuals who are already operating at a hectic pace and under heavy demands, and provide a better environment for active participation. Aspects that might be replicated include maintaining cell phone–free zones during sessions; extending the conference a day or two to afford more free time for attendees to get pampered or just relax (if supported, individuals might be willing to take personal days from work to have the extra time at the conference); eliminating the feeling of guilt for those who do not keep up with the existing pace and wish to take some downtime.
Shortly after arriving home, I received the official notices that I had been nominated and selected to become a member of the Guidelines International Network (G-I-N; www.g-i-n.net) North America (NA) Steering Committee and to be a Patient Advocate for the National Cancer Institute (NCI) Ovarian Task Force. How better prepared and energized I am to participate in these important additional opportunities. This is an exciting time for guidelines development and implementation around the world, and G-I-N NA is at the center of the action. And it is such an honor to represent the patient community for NCI!
If you know of a cancer patient advocate who would benefit from attending this year’s ESCAPE program, please refer her or him to BAG IT’s website for more information and an application for this year’s program (http://bagit4u.org/).
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