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Coming Soon: In-Depth Summary Patient Advocacy Summit: Patient Concerns in 2014 – Big Data, Access, and Palliative Care

By Jessica DeMartino, PhD, Manager, Health Policy Programs

On November 3, 2014, the National Comprehensive Cancer Network® (NCCN®) held its 5th Annual Patient Advocacy Summit: Patient Concerns in 2014 – Big Data, Access, and Palliative Care at the National Press Club in Washington, DC. An in-depth summary of the Summit will be available on in the coming weeks.

From the plethora of data they encounter when making treatment decisions, to accessing and paying for cancer care, to palliative care, patients need resources to help them make appropriate care and financial decisions. Topics discussed at the Summit included the patient role and experience in big data collection and utilization, how patients are accessing and paying for drugs and biologics in the current political and regulatory environment, and an assortment of issues regarding palliative care.

The program began with a keynote address from Gabriel Eichler, PhD, PatientsLikeMe (PLM), a patient-powered research network. Dr. Eichler discussed the generation of insights from real-world patients experiences. Relatively new to the oncology space, PLM uses its Open Research Exchange platform to create patient-reported health outcome measurements. 

The Patient Advocacy Summit then featured three roundtable discussions moderated by Clifford Goodman, PhD, The Lewin Group. Daniel Auclair, PhD, the Multiple Myeloma Research Foundation, set the stage for discussion with a short presentation about big data from the patient advocacy perspective. Following his opening statements, Amy Abernethy, MD, PhD, Flatiron Health, Inc; Adrian Gropper, MD, Patient Privacy Rights; John Ioannidis, MD, Stanford University; David Purdie, PhD, Genentech; and Paul Wallace, MD, Optum Labs, joined Dr. Auclair to discuss Big Data and the Patient. The panel touched upon a variety of issues including data standards, advantages and downsides of big data, data quality, and the future of big data.

The second roundtable discussion, Addressing Patient Access Issues, was introduced by Dana Malick, American Cancer Society Cancer Action Network, and included Alan Balch, PhD, Patient Advocate Foundation; Tom Farrington, Prostate Health Education Network; Jax Ferguson, MBA, Eli Lilly; Michael Kolodziej, MD, Aetna; Laurel Todd, MBA, Biotechnology Industry Organization; and Ray Wezik, International Myeloma Foundation and the State’s Patient Equal Access Coalition (SPEAC). The panelists discussed the state of patient assistance programs, the lack of assistance for hospital costs, the difficulty in understanding insurance terminology and picking appropriate health insurance, and network adequacy, among other topics.

Palliative Care and the Patient, the third roundtable discussion, featured panelists Rebecca Kirch, JD, American Cancer Society; Michael Kolodziej, MD, Aetna; Shelley Fuld Nasso, National Coalition for Cancer Survivorship; Linda Sutton, MD, Duke Cancer Institute; and Jennifer Temel, MD, Dana-Farber/Brigham and Women’s Cancer Center|Massachusetts General Hospital Cancer Center. Dr. Sutton set the stage for discussion by first covering the basics of palliative care. The panel discussed Dr. Temel’s research around palliative care, appropriate access to opioids for pain management, and payment and reimbursement for advanced care planning and palliative care.

An in-depth summary of the NCCN Patient Advocacy Summit will be available in the coming weeks.

For more information about the NCCN Policy Summits, visit