Cancer Patients and Pharma Catalyze Action to Share Research Data

Marcia Kean (Feinstein Kean Healthcare), Charles Hugh-Jones (Sanofi), Gwen Darien (The Pathways Project)
Patient Engagement
Location: Plaza Room B Level: Non-technical

Among the sectors that has been most resistant to the type of standards-based information flow so common to our modern society has been the cancer research community. Cancer data of all kinds – from patients’ molecular profiles to their treatment histories to their clinical outcomes – have been trapped within individual research laboratories, physician offices, and academic medical centers. Even within the four walls of a single institution it has been hard to share data - much less between and among the 60+ National Cancer Institute-designated cancer centers, the dozens of community cancer centers, and hundreds of oncologists’ offices across the nation.
Meanwhile, patients have soldiered on, often assuming in good faith that researchers and providers were sharing such data for the ‘greater good’…believing all that data would be transformed into information and then into knowledge to accelerate discovery and refine/improve treatment, if not for themselves then for patients who’d follow. No such luck. For decades, cancer research and clinical data has been largely trapped in silos, and efforts to liberate it have faced a host of ‘dragon-like’ technical, cultural and policy hurdles: the vocabularies used in data collection were not standards-based; the researchers hoarded data for their scientific publications and grant applications; the healthcare providers kept the clinical data for competitive advantage; and pharma companies kept it for intellectual capital and patents.
Now, cancer patients are awakening to a new day, enabled by numerous technological and societal shifts: the growing amount of health data exchange powered by government-stimulated adoption of EHRs; the thousands of physician
and patient-friendly health ‘apps’ designed for I-Pads and smart phones; the popularity of using ‘Big Data’ as a strategy to improve industrial productivity; and a growing self-awareness that they – the patients themselves – are the sleeping giant of healthcare: slow to be roused but powerful when angered.
In the midst of these changes, a new Coalition is forming, comprised of all the participants with a stake in battling cancer. The Coalition concept — unveiled at the February 2012 Institute of Medicine workshop on the ‘crisis’ in cancer informatics – is to slay the technical, cultural and policy dragons with a national network of standards-based data exchange ‘pipes’ through which data can flow, boosted by a social marketing and digital influence campaign to make data-sharing the obvious choice.
The Coalition is dedicated to bringing the benefits of science to patients through education and policy change, as well as undertaking practical projects to build, demonstrate and drive adoption of the tools of interoperability. The first project, led by pharma company Sanofi through the CEO Roundtable on Cancer’s Life Sciences Consortium, will contribute de-identified clinical trial data into a freely accessible repository, and it’s hoped that other pharmaceutical companies will follow suit with their own clinical trial data. Future projects will include development of standards that are lacking for data exchange; collection of longitudinal healthcare data from patients through their membership in disease advocacy organizations; and campaigns to change the protocols of government research grants to weave in data-sharing as a requisite of funding.
A Coalition Steering Committee has been formed that’s comprised of the key constituencies of the cancer community: patient groups, academic medical centers, policy organizations, Big Pharma companies, Big IT companies, and emerging informatics companies. It’s recognized that no single stakeholder group can act alone, but in concert there is strength and momentum.

Photo of Marcia Kean

Marcia Kean

Feinstein Kean Healthcare

Marcia Kean has 35+ years of strategy and communications experience in the life sciences and healthcare. She has assisted 300+ emerging biopharmaceutical companies, policy organizations and academic centers. She has served on multiple advisory committees in academe and government, and has been a frequent speaker at conferences on personalized medicine and the convergence of genomics and informatics technologies. She leads the Steering Committee for the formation of a data liquidity coalition for data-sharing in the cancer research community.

Photo of Charles Hugh-Jones

Charles Hugh-Jones


Dr. Hugh-Jones is an oncologist, with many years of experience in medical affairs for pharmaceutical products. He previously served at Schering AG, and Enzon Pharmaceuticals. He leads the Metapharm project for the CEO Roundtable on Cancer Life Sciences Consortium.

Photo of Gwen Darien

Gwen Darien

The Pathways Project

Gwen Darien, a cancer survivor herself, brings a wealth of personal and professional experiences to her position as a director of The Pathways Project—a radically inclusive organization that creates communities and catalyzes movements that put people at the center of health care research and delivery. Ms. Darien served as executive director of the Samuel Waxman Cancer Research Foundation. In this role, she was committed to developing collaborations across all segments of the cancer community to translate cancer research discoveries from the bench to the clinic.

Prior to joining SWCRF, Ms. Darien was editor-in-chief of CR magazine and director of the American Association for Cancer Research Survivor and Patient Advocacy Program where she led initiatives to foster mutually beneficial and enduring partnerships among leaders of the cancer survivor, patient advocacy and scientific communities through collaborations, communications and education. Ms. Darien was previously the editor-in-chief of MAMM, a consumer magazine dedicated to women with breast and reproductive cancer. During Ms. Darien’s tenure, MAMM won international acclaim for its coverage of survivorship, health disparities, controversies in women’s cancers and health care policy.

Ms. Darien is Chair of the NCI Director’s Consumer Liaison Group. She is a member of the Board of Directors of ENACCT (Education Network to Advance Cancer Clinical Trials) and the Strategic Advisory Group (SAGE) of the Center for Patient Partnerships at the University of Wisconsin. She has served on the Secretary’s Advisory Committee on Health, Genetics and Society and the faculties of the AACR/ASCO Methods in Clinical Cancer Research Workshop, Accelerating Anti-Cancer Agent Development and Validation Workshop and the advisory board of the Health Advocacy Program at Sarah Lawrence College. She has received several awards for her work, including: the Avon Foundation Media Leadership Award, the LYMPHAdvocate Award from the Cure for Lymphoma Foundation, and the Sisters’ Network Media Leadership Award. Darien is a graduate of Sarah Lawrence College.


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