Volunteer Opportunity - Prostate Cancer Patient Advocate with SWOG for Genitourinary Cancer Committee

[JRPnSD]

I have served as a volunteer Patient Advocate representing the LGBTQ+ Community with the Southwest Oncology Group (SWOG) for the past two years. As such I am serving as a member of the Patient Advocacy Committee (PAC) and the Diversity, Equality, and Inclusion Committee. I attend monthly zoom meetings and two in-person SWOG Semi-annual meetings (expenses paid) each year. This has afforded me the opportunity to interact with researchers directly involved in developing clinical studies for cancer studies and has also allowed me to attend meetings like ASCO through their professional development program. Last year's ASCO meeting brought over 35,000 leading Oncology Researchers together in Chicago. Last year I was able to review my particular details of therapies and living with APC at a session of over 800 of the world's leading PC Professionals. My particular background is a Master's in Public Health and research in Toxicology.

If you or someone you know is interested in participating in cancer clinical trials research, please note the following opportunity. SWOG Cancer Research Network, a member of the National Cancer Institute’s National Clinical Trials Network (NCTN), seeks three experienced patient advocates to participate in the Genitourinary Cancer Committee for Prostate Cancer.

About SWOG Cancer Research Network

SWOG designs and conducts multidisciplinary clinical trials to improve the standard of care in preventing, detecting, and treating cancer, and to enhance the quality of life for cancer survivors. SWOG is supported largely through NCI research grant funding and is committed to bringing the voice of the patient into the research process.

Role of the SWOG Patient Advocate

The primary role of the Patient Advocate within SWOG is to bring the perspectives of those most affected by cancer to the group’s work at all stages of clinical trials – define, design, develop, and deliver. Patient Advocates are members of both the Patient Advocate Committee and the given research or research support committee.

Requirements for being a SWOG Patient Advocate

1. Experience with, and a dedicated interest in, cancer research and survivorship concerns, particularly across the disease area for which the candidate is being considered and with experience in clinical trials advocacy. This experience should include having a leadership role or other similar representation in a national or regional lay cancer advocacy or survivors’ organization and having strong ties to the larger cancer advocacy network.

2. Personal experience with cancer. This can include being a survivor of cancer or a primary caregiver for a family member or friend with cancer or having extensive experience working with cancer patients in an advocacy role.

3. Willingness and ability to attend all semiannual SWOG meetings and monthly teleconference calls.

Duties of the Patient Advocates to the Group

1. Primary role is to bring the perspectives of those affected by cancer to SWOG.

2. Advocates will provide input across the clinical trial lifecycle: define, review, design, Implement, and share phases of clinical trials.

3. Advocates attend regularly scheduled SWOG Group meetings. Two meetings are held each year – one in the spring (Seattle or San Francisco, typically April) and one in the fall (Chicago, typically October). SWOG returned to in-person meetings in 2022 but uses a hybrid approach that allows virtual attendance (subject to change). SWOG will pay for airfare and ground transportation, hotel accommodations, and meals for each meeting. Advocates will attend their Committee’s session and the Patient Advocate Committee meeting. The Committee chair will determine the nature of participation in Committee activities. In addition to in-person Group meetings, monthly calls for the Committee and for the Patient Advocate Committee are conducted.

4. Professional development funds are available for the Advocates to use to cover some portion of the costs to attend at least one oncology conference per year.

5. Advocates will be on e-mail distribution list to receive concepts, protocol drafts, and other materials from their Committee when drafts go out for Committee review, and provide input on these materials to their Committee.

6. Advocates will work with the Communications and Public Relations Manager to help create, review, and disseminate information regarding Group clinical trials to regional and local advocate groups involved in patient education and outreach efforts that extend the mission of SWOG.

7. Advocates will provide suggestions on how the Group can best work with the advocacy community.

8. Advocates will provide the Group with suggestions and feedback from the national, local, and regional advocacy community.

9. All Advocates will agree to maintain the ethical and confidentiality standards of the Group.

10. Advocates serve for five years (renewable after the first five-year term for one additional term at the discretion of the Group Chair) and receive feedback annually.

Please send me a Direct Message (DM) if you have any interest in this opportunity and I will put you in touch with our Chairperson of the Patient Advocacy Committee for SWOG for further discussion. Applications are Due by March 17th.