Welcome to the Patient Advocate Research Team (PART) Program
What is the PART Program?
The Patient
Advocate Research Team (PART) Program
helps SPOREs build effective collaborations with cancer patient advocates.
Most SPORE patient advocates are willing to make a personal commitment to
work directly with cancer researchers in a specific SPORE program. In addition,
SPORE patient advocates get involved operationally with SPORE research programs
so that each SPORE realizes its translational goals more efficiently to
ensure patients get better answers more quickly! These patient-focused individuals
may also belong to other kinds of patient advocacy organizations but concentrate
on helping SPOREs move toward patient-oriented results by getting involved
in SPORE meetings and activities.
Each SPORE decides if they want a local PART team. Once a PART team is created, the team molds its objectives to the specific SPORE. Most importantly, the PART does *not* prescribe a "one size fits all" game plan nor does the PART manage the team. Rather, PART will assist in training, models, sharing ideas and strategies as well as creating a network. When national issues arise, working groups often provide internal and external expertise.
Currently, patient advocates work with approximately 30 of the 56 SPORE programs throughout the U.S. While most SPOREs include patient advocates at an advisory level, some SPOREs are involving patient advocates at an operation level. The following list shows the SPOREs who have integrated patient advocates into their research operations:
Spore Patient Advocate Accomplishments
The SPORE program translates discoveries into results for people with cancer. Since most researchers are not charged with moving the science closer to real people, this focus is unique among research. Patient advocates focus on ways to improve research results, rather than other traditional forms of patient advocacy.
SPORE Patient Advocates contribute in the following ways:
- Participate in research discussions and strategy meetings
- Ask result-oriented questions that help SPOREs focus on ways to move discoveries toward clinical applications for people
- Facilitate discussions among disparate scientific disciplines to create collaborations
- Serve on SPORE executive committees
- Help review small, "seed" grants that SPOREs can fund
- Help identify gaps & barriers in the research system, and facilitate discussions with federal agencies, national organizations, and companies and institutions to streamline the discovery-development-delivery process
- Learn why tissue is important to researchers and patients, and help researchers get what they need while respecting privacy issues
- Improve tissue consent and collection processes
- Review surveys, instruments, consents, websites, projects, and cores
- Serve on local Institutional Review Boards
- Bring awareness of the SPORE program and its clinical trials to patient and community organizations
- Hold educational forums between patient & research communities
- Brainstorm on ways to improve the clinical trial system for participants
- Give input into clinical trial development and design
PART Program Goals
- Help SPOREs develop local Patient Advocate Research Teams (PARTs).
A consistent process has been used to create effective teams that fit each unique research program and its environment. This process includes steps to help SPORE investigators:
- Identify SPORE patient advocates
- Determine roles and expectations with participating patient advocates
- Identify and plan initial steps for 1-2 key activities/projects
- Implement the plan
The PART Program can also assist existing teams to expand their efforts if desired.
- Connect PART teams together to share information.
There are several ways that PART teams can communicate with one other. Communication vehicles include websites, emails, conference calls, surveys, and meetings. Levels include:
- Global: all SPORE patient advocates can share ideas and challenges, and participate in training available throughout the PART Program.
- Cancer Type: SPORE patient advocates can participate in disease-specific discussions to identify specific issues and discuss ways to work together.
- Topic: Patient advocates who are interested in specific SPORE issues can participate working groups to help alleviate barriers to progress.
- Identify common SPORE issues and help to resolve them.
SPORE PIs share their top internal and external challenges twice a year. Once a common issue is identified, a working group of SPORE investigators, patient advocates, and external expertise will develop a plan with identified actions to help resolve each issue.
- Build resource banks for SPORE clinical trial development.
The PART Program will help collect tools and concepts that SPOREs (and others) use to deliver effective clinical trials. Investigators will be able to use these ideas as they develop new protocols and studies.
The informed consent process is the current target, and development plans include:
- Information on IRB experiences by institution, with specific ideas on how to create an informed consent that can succeed rapidly
- A patient advocate working group to help review informed consent forms for SPOREs that don't have their own PART team, or for additional review
- Development of a clinical trial delivery checklist
- Assistance in developing tools for selected InterSPORE clinical trials
- Pilots of new informed consent processes for key SPORE clinical trials
* Funding for PART is through an InterSPORE supplement by NCI and AVON to help all SPOREs. Joe Gray and Deborah Collyar are co-project leaders of this grant supplement.
Contact/Feedback
For more information, contact us at information@sporeadvocates.net or (925) 736-8155.
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