NCI's Advocacy Summit Educates and Inspires
The dedication and enthusiasm of the advocacy community were palpable last week on the NIH campus. The occasion was the inaugural NCI advocacy summit, Listening and Learning Together: Building a Bridge of Trust, hosted by the NCI Director's Consumer Liaison Group (DCLG) and cosponsored by the NCI Office of Liaison Activities (OLA) and the Foundation for the NIH.
An idea that originated from the results of a survey of the advocacy community conducted in 2003, the summit was an exciting gathering of some 250 patient advocates from all across the country. Attendees represented local and national organizations, all dedicated to activities such as increasing awareness about specific cancers; raising money to support cancer research; and providing services to patients, survivors, and caregivers.
I had the privilege of speaking at the summit's opening plenary session and again at the closing ceremony. Talking with advocates is one of the most rewarding aspects of being part of NCI leadership. After all, these are dedicated people who log many hours as volunteers not only for their own organizations but also in various volunteer capacities for NCI and their local cancer centers. Their desire to learn as much as they can about NCI and cancer - all in an effort to more effectively promote their cause - always amazes me.
And that's what much of this summit was about: communication, education, and trust. There were breakout sessions focused on best practices, as well as NCI outreach and educational opportunities. Virgil Simons from Prostate Net, for example, discussed the success of his organization's partnership in 2004 with MGM Studios to promote prostate cancer screening in barbershops nationwide, using the movie BarberShop 2 as the campaign's hook.
At a town hall meeting, DCLG members had the opportunity to hear directly from summit attendees about the most pressing issues and concerns in their communities. A recurring theme was finding effective ways for individual organizations to raise funds.
The hit of the meeting, however, was the poster picnic. The picnic allowed both advocates and NCI staff to gather informally during lunch to share best practices, or learn about new tools and resources. The picnic was a rare opportunity for NCI staff involved in a broad array of programs and initiatives to get "face time" with advocates. Staff from NCI's The Cancer Genome Atlas project, for instance, talked about the rationale behind this important initiative and what they hope to achieve.
At the closing ceremony, I had an important message for summit attendees: They are our voice when it matters most. Advocates are the strong voice of cancer patients here at NCI and in all government forums - and the need for that voice is as great now as it has ever been.
For those who couldn't attend the summit, you can watch it on the NIH Web site. In addition, there is an abundance of information for advocates on the newly revamped OLA Web site, as well as the sister sites for NCI's DCLG and Consumer Advocates in Research and Related Activities program.
It's often said that everybody has been touched by cancer in some way. This summit is the embodiment of that statement. It was truly inspirational, and I am honored to have been a part of it.
Dr. John E. Niederhuber