Alliance Patient Advocate Committee (PAC)

Transcription

1 Aiance Patient Advocate Committee (PAC) Patty Spears Raeigh, NC Co-Chair Pat Gavin Grand Rapids, MI Co-Chair Aiance Group Meeting, Chicago IL on May 11, 2017

2 Patient Advocate Committee (PAC) ROLE: Patient Advocates in the Aiance for Cinica Trias in Oncoogy (Aiance) represent the perspective of patients and their famiies in the deveopment and deivery of innovative cinica trias. GOAL: Patient Advocates work together with mutidiscipinary cancer professionas to deveop and advance outstanding research in the treatment and care of cancer patients and the prevention of cancer.

3 Who are we? Cancer patients and caregivers from a waks of ife with the common goa of heping researchers deveop and impement cinica trias that address patient issues through advancing the science. Members of Aiance disease and modaity committees. Patient Advocates attend and participate in scientific meetings, review study concepts and protocos, and assist in designing study accrua strategies.

4 Patient Advocate Committee May 2016

5 21 Patient Advocates Members of the Aiance Patient Advocate Committee (PAC) participate in most committees of the Aiance and continue to bring the voice of the patient to a work conducted by the Aiance. Pat Gavin Co-Chair Laura Ceveand Deborah Coyar Coeen Crespo Jo-Een DeLuca Karen Durham Bob Harrison Kay Kays Shey Kuhmann Pam Moffitt Patty Spears Co-Chair Phyis Nassi James Ome Jane Permutter Hank Porterfied Ivis Sampayo Yasmeem Watson Jack Whean Sara Whitock Peggy Devine (NT) Kar Schwartz (NT)

6 Representation on Disease Committees Breast Leukemia Patty Spears* Laura Ceveand* Jane Permutter Lymphoma Ivis Sampayo Jack Whean* GI Kar Schwartz Kay Kays* Myeoma JoEen Deuca* Jim Ome* GU Yasmeem Watson* Neuro-oncoogy Shey Kuhmann* Hank Porterfied* Bob Harrison* Jack Whean Respiratory Pam Moffitt Sara Whitock

7 Representation on Modaity Committees Experimenta Therapeutics Deborah Coyar Radiation Oncoogy Sara Whitock Transpant Jim Ome Ethics Deborah Coyar Jane Permutter Pubications Deborah Coyar* Data Safety Monitoring Board Patty Spears Leukemia Correative Science Laura Ceveand Pharmacogenomics Phyis Nassi ACS Committees Cancer Care Deivery Research Deborah Coyar Pat Gavin Jane Permutter Patty Spears

8 Representation on Cancer Contro Committees Cancer in the Edery Heath Outcomes JoEen DeLuca Pam Moffitt Karen Durham* Jane Permutter* Community Oncoogy Prevention Karen Durham Pat Gavin Heath Disparities Coeen Crespo* Ivis Sampayo* Phyis Nassi* Coeen Crespo Hank Porterfied Patty Spears Symptom Intervention Jim Ome Jane Permutter

9 What we do Activey engage in the Aiance cinica tria process. Patient Advocates participation ensures incusion of patient perspective and concerns as trias are deveoped. Vounteer at the oca, regiona and nationa eves. Invovement may be in research advocacy or other advocacy areas such as support or fundraising. Through these activities, Aiance Patient Advocates keep cose affiiation with patients and are uniquey quaified to bring the patient voice and perspective to the research tabe.

10 We are here to hep EXAMPLES Concept: We are wiing to review concepts before they are officiay submitted to the SCRC for review, and provide feedback. Protoco: Once a tria is approved, we can be a resource when you write the consent form, to ensure the reading eve is appropriate and the protoco is understandabe. Accrua: If you have a study idea that you are not sure wi accrue we, the PAC can be a resource for feedback during pre-concept deveopment. The PAC can be a resource in patient materia deveopment for compex trias, which can enhance participants understanding of the tria and therefore accrua. If a tria is not accruing as panned, the PAC can be a resource to identify potentia patient barriers.

11 We are here to hep (cont.) EXAMPLES Resuts: We support returning research resuts to participants. We have been invoved in pubishing study resut summaries on the Aiance website and are continuing this endeavor (Deb Coyar). Patient Materias: We are a resource to a committees and the NCI for patient facing materias deveopment. Brochures: We have heped to deveop and SOP on the incusion of patient brochures in a Aiance cinica trias. Participant Thank You Letters: We have heped to deveop and SOP on the incusion of participant thank you etters in a Aiance cinica trias. Accrua Checkist: We heped deveop the current Aiance Accrua Checkist and have been invoved in deveoping a more comprehensive accrua checkist for a NCTN trais

12 We are here to hep (cont.) EXAMPLES Data Sharing: We support sharing data from current and competed Aiance and a NCTN trias. We initiated a resoution that was signed by a NCTN advocates and over 200 supporters. PCORI projects: We are a resource to a Aiance run PCORI projects and provide a patient perspective to their deveopment, conduct, anaysis and dissemination. Pubications: Severa of our members have been contributing or senior authors on a variety of cancer and cinica tria pubications. There were a tota of 13 pubications from November 2015 to Ten PAC members have pubished over 80 artices that range from persona stories to ASCO Guideines.

13 Recognition Jack Whean was recenty awarded the AACR Distinguished Pubic Service Award in Apri The Distinguished Pubic Service Award honors the extraordinary contributions of an individua or group whose groundbreaking, innovative work exempifies the AACR s mission to acceerate the prevention and cure of a cancers through research, education, communication, and coaboration. Distinguished pubic service takes many forms, and past winners have incuded generous phianthropists, government officias, advocates, and members of the media. Whean embodies the substance and spirit of this award.

14 Put a face on your research

15 Concusion Questions from Audience Answers from Presenter