Fight CRC Research Advocate Appointed to National Research Institute’s Advisory Panel


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Hartley (Lee) Jones will help bring the patient, caregiver and research advocate voice to guiding the institute’s patient-centered research efforts

SPRINGFIELD, Mo. – Aug. 29, 2017 — Hartley (Lee) Jones, stage IV colon cancer survivor and Fight CRC research advocate, has been appointed by the Patient-Centered Outcomes Research Institute (PCORI) as a member of its Advisory Panel on Clinical Trials.

Jones will join other members of the panel in applying his experience and expertise to helping PCORI refine and prioritize research funding alternatives and ensure that the research PCORI supports centers on the outcomes that matter to patients and other healthcare decision makers. PCORI is an independent, non-profit organization authorized by Congress to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

Jones was selected on the basis of his experience, expertise, and ability to contribute to the panel’s tasks and responsibilities. Panel members represent a broad range of healthcare stakeholder groups and perspectives, including patients, family caregivers, clinicians, drug and device makers, and researchers, among others.

Jones has been a successful manager and executive in banking, corporate, government, consulting and not-for-profit organizations. He is a late-stage colon cancer survivor and active member of Fight CRC’s Research Advocate Training and Support (RATS) program that’s working to find more effective treatments for colorectal cancer and provide more effective support to patients. As a cancer patient and survivor, he is committed to promoting the patient voice in research, treatments, medical care and the healthcare system in general.

“I am honored to have been selected by PCORI and very excited to join their Clinical Trials Advisory Panel,” said Jones. “Recognizing how very fortunate I am to have survived such a deadly cancer, I am committed to helping support critical research so that others afflicted with cancer can go on to live full and productive lives. Clinical trials are key to developing new and improved treatments, and we need to continue to find ways to make patients more involved in the design and conduct of trials to improve recruitment, retention, and outcomes that are positive for the patients.”

Regarding Jones joining the Advisory Panel on Clinical Trials, Fight Colorectal Cancer President Anjee Davis stated,

“Traditionally, scientists have not always engaged patient advocates in the developmental process. But PCORI has uniquely created a contract and grant environment where patient values are parallel to scientific efforts.  We are incredibly proud to see Lee join the PCORI Advisory Panel on Clinical Trials. It is a very important panel, and Lee will have the opportunity to discuss with leaders in the field the patient viewpoint on valued outcomes and represent our communities’ healthy impatience and desire for progress.”

More information about the Advisory Panel on Clinical Trials, including its scope of work and a list of all members, is available on the PCORI website.

About Fight Colorectal Cancer

Fight Colorectal Cancer (Fight CRC) is a trusted national nonprofit advocacy organization fighting for a cure. It was founded in 2005 by Nancy Roach, a patient advocate who witnessed the need for colorectal cancer advocacy after her mother-in-law’s diagnosis. The organization plays an important role in rallying colorectal cancer advocates to action. Fight CRC is known for activism and patient empowerment throughout patient, academic, political, scientific, medical and nonprofit communities. With a mission focused on advocacy, research, patient education and awareness, the organization serves advocates in every state of the U.S. and many others around the world. Fight CRC is a 4-star charity by Charity Navigator and 93 cents of every dollar donated goes directly to colorectal cancer programs.