The Patient Advocates for Research Council (PARC) at UNC Lineberger Comprehensive Cancer Center provides researchers with the perspectives and experiences of patients, survivors and caregivers on issues associated with clinical studies and projects. The goal of this collaborative process is to generate knowledge and insight that will improve the lives of all cancer patients.

Why is the involvement of research advocates important?

Research advocates bring sensitivity and awareness of the patients’ interests into cancer research and help ensure that research efforts remain centered on creating knowledge that will improve the lives of all cancer patients.

Research advocates partner with researchers and clinicians to identify areas for patient, survivor and caregiver inclusion in research and clinical trials.

What do research advocates do?

Research advocates provide the patient voice by:

  • Promoting the inclusion of patient centered materials to aid in recruitment to new or ongoing clinical trials;
  • Contributing to the submission and conduct of research grants requiring patient partners;
  • Providing the patient perspective in the practicality of a clinical trial and its impact on patient care; and
  • Providing the patient perspective in staff and student training.

News

Oncobites: Getting Cancer Treatment Right: When more is not always better.
Patient research advocate Patty Spears wrote an article about a growing concern of overtreatment of cancer patients. It is time to treat each patient as an individual instead of treating all patients the same.

Patient Reported Outcomes Performance Measures (PRO-PM) Update
Study results of PCORI-funded project presented by patient investigators Patty Spears and Mary Lou Smith.
Learn how patient reported symptoms may be able to assess cancer care quality.

UNC Lineberger: Stand Up To Cancer names UNC Lineberger researchers to ‘Dream Team’
Patient research advocates will be involved in a new AACR Stand Up to Cancer Dream Team at UNC.

UNC Health Care: Saira Sheikh and Patty Spears featured speakers at the National Academy of Sciences Health Literacy in Clinical Trials workshop
Patient research advocate Patty Spears was on the planning committee and participated in a National Academy of Sciences Roundtable on Health Literacy’s Health Literacy in Clinical Trials Workshop.

Cancer Conversations: Understanding Clinical Trials
Patient research advocate Patty Spears presented a webinar on clinical trials.

Oncobites: Listen to me!
Patient research advocate Patty Spears wrote an article on the importance of patient reported outcome measures in clinical trials.

Patient Advocates for Research Council Members

Laurie Betts
Catherine Huffman
Laura Jensen
Paul Johnson
Aisha McClellan
David McNellis
Susan Palmer
Patty Spears