As promised, after lunch the delegates were put right back to work. This time they were tasked to take the obstacles they identified and the changes they desired and come up with some potential solutions. Once again, these potential solutions were sent immediately to a central database and the results were quickly generated. Here are the results:

Obstacles:
Poor Information
Working with your Health Care Team
After Effects of the Disease
Insurance / Finances
Lack of Support for the Patient
Supporting Your Family
Emotional Issues
Practical Challenges (child care, transportation, etc)

Changes Desired:
Improve Patient Navigation
Need for Support for Caregivers
Improved Communication with the Healthcare Team
Take Care of Myself
Support and Information About Financial Impacts

Potential Solutions:
Cancer survivors need:
– Access to usable and appropriate information (N)
– More flexible and responsive insurance system (S)
– Improved patient navigation system during and after treatment (W)
– Increased support for survivors and family (MW)
– Timely financial support and guidance (N)
– New standards for communication among survivors and healthcare professionals during and after treatment (S)
– Support for practical needs during and after treatment (W)
– Empowerment of survivors and families to advocate on their behalf (MW)

Access to usable and appropriate information
– Create a clearinghouse linking available resources
– Synthesize and organize information – Don’t create more
– Ensure Reliability of Information
– Create wider dissemination of the LIVESTRONG Notebook
– Provide information available outside of health care setting (hair salons, bodegas, libraries)
– Provide information “Starter kit” at diagnosis
– Have MDs provide diagnosis information and/or end of treatment plans

More flexible and responsive insurance system
– Expand coverage/reimbursement to cover:
– Ombudsman for your insurance issues
– Coordination and communication between MDs, patients & insurance companies
– Advocate to make insurance reform a national priority

Improved patient navigation system
– Develop standards of care
– Train professional staff on information which is culturally relevant and unique to the survivor
– Collaborate with schools (Universities), local resources, employers, insurance companies and government agencies
– Create an information packet addressing all aspects of survivorship
– Teach survivors to self-advocate
– Allow for equal access to patient navigation
– Model after systems that are already working

Increased support for survivors and family
– Involve all members of community:
– Train/educate the healthcare team on cultural competency, open dialogue
– Community outreach

Timely financial support and guidance
– Require that all costs of treatment options be presented up-front
– Develop a program/document that helps someone navigate financial issues of diagnosis and treatment
– Provide no-interest loans to cancer survivors to assist with treatment costs
– Develop a program where financial experts/planners can donate their time to cancer survivors to help manage finances
– Advocate for health insurance or healthcare for everyone

New standards for communication among patients and healthcare professionals during and after treatment
– Common information resources to standardize communication (e.g. patient records, drug interactions, guide to questions patients should ask, etc.)
– Ensure all patients receive copies of their medical records and care summaries
– Define roles of the Healthcare Team: What does a social worker do and what types of issues should you bring to your social worker?
– General health care professional training on communication with patients
– Teach medical students how to communicate effectively

Support for practical needs
– Improve access to transportation
– Provide child care services
– Develop organizations and volunteer networks to provide practical assistance (e.g., Meals on Wheels, mowing the lawn, shopping, cleaning)
– Create programs like Big Brother/Big Sister specifically for cancer patients
– Increase # of survivorship/wellness centers and programs for survivors after treatment
– Develop a website (like match.com) for cancer survivors to match with other survivors

Empowerment of survivors and families to advocate on their behalf
– Advocate for a Patients’ Bill of Rights
– Offer to personally help another cancer survivor
– Conduct a national advertising campaign to help cancer survivors advocate for themselves
– Create a “Certified Cancer Educator” program where people can be trained to help survivors navigate the system and be an advocate on survivors’ behalf

Tamika Felder

Following this roundtable session, the audience was treated to a series of four delegate panelists who told their stories of how they were not only able to identify a problem within the cancer experience, but then took some concrete steps to solve it.  Titled How to Develop a Personal Action Plan the delegates heard from Genné McDonald who developed a post-cancer exercise program for women, Tamika Felder who created a cervical cancer support group, Richard Nares who created a transportation service for underserved communities, and Susan Matsuka Shinagawa who told of becoming a diligent cancer advocate - very, very inspiring to all attending!

And finally, the day was closed out with a very non-traditional, team-building session.  The seven-man group "Drum Café" took to the stage for some African drumming, but they were not the only talent performing.  As the drums started beating the band leader told the delegates to look under their tables. Wow - 700 African drums were there for each and every delegate.  The band taught the audience different rhythms and techniques and within 20 minutes the "boom-tah-boom, tahki-tahki-boom!" was reverberating throughout the Austin Convention Center - It was very cool…

The day was not entirely over, however, as the Lance Armstrong Foundation hosted a fajita dinner at the Austin Music Hall, complete with a Mariachi Band, Mexican dancers, and the Texas Aggie Wrangler country and western dance team. Following the dinner, on a perfect Texas night, the delegates headed out, some back to their hotels, and many to sample some of the Austin nightlife. Day two was a really awesome experience...

Drum Cafe gets everyone into the beat!