# Presentation: 766412

## The InterSPORE PART Program

**An Introduction to the Patient Advocate/Research Team**** (PART) Program**
**Deborah Collyar, Program Director & Co-PI**

## What Is the PART Program?

**InterSPORE Patient Advocate/Research Team Program to**:
- Enhance SPOREs’ ability to translate effectively
- Help SPOREs & patient advocates work effectively together
- Based on successful models
- Solicit feedback from SPORE investigators & patient advocates
- Program will develop, based on needs
**How is it Funded?**
- Through an InterSPORE supplemental grant, funded by AVON & NCI
**Who is Involved?**
- Joe Gray, PI
- Deborah Collyar, co-PI & Program Director
- Sheryl Eisenbarth, POCRC Advocate Coordinator
- More will be added as program evolves

## Why Does PART Exist?

**Internal Challenges to SPOREs**
- Promote ongoing interdisciplinary research
- Connect disciplines & researchers to common goals & collaborations
- Instill the “team” concept
- Help resolve traditional barriers if they impede SPORE results

**External Challenges to SPOREs**
- Develop actions to resolve endemic SPORE issues, e.g.
- HIPAA barriers +
- Moving to preclinical & beyond
- Intellectual property
- IRB inconsistency
- Discussions w/key stakeholders (e.g. government, companies,         institutions, associations)

**Why are Patient Advocates Interested?**
- Patient advocates think translationally!
- Recognize SPORE’s potential to get better answers to people more quickly

## A Special Kind of Advocacy...

- PART Program: Research Advocacy
- Help SPORES translate more effectively
- Patient experiences/viewpoints into research discussions
- Activities that help many aspects of each SPORE
- Basic
- Epidemiology
- Clinical
- Remember...
- In order to help, advocates must know what’s happening in your SPORE!

- NOT in the PART Program*
- Fundraising
- Lobbying/political initiatives
- Watchdog advocacy
- Direct patient support

- * Can only be done as individuals, not as SPORE advocates

- Copyright, 1999-2003, PAIR: Patient Advocates In Research

## PART Program Goals

**Help SPOREs develop local Patient Advocate Research Teams**
- Each SPORE is unique, models of successful teams as a guide
- Proven steps to build successful teams
- Onsite support includes orientation for investigators & for advocates
**Connect PART teams together to share information**
- Share ideas & issues, moral support
- Training and resources for scientific & advocacy concepts
- Categories: global (all SPORE advocates), by cancer type & by topic
**Identify common SPORE issues & help resolve them**
- Regular SPORE polls to identify national priorities
- Task forces to address them with action plan
**Help build resource banks for clinical trial delivery**
- E.g. Collection of HIPAA experiences, IRB experiences, etc.
- E.g. Collection of clinical trial delivery resources (consent & accrual)

## Examples of SPORE Patient Advocate Assistance*

**SPORE Projects & Cores**
- Input on strategic direction, patient experience to help create tighter focus
- Grant reviews (developmental, SPORE renewals, other mechanisms, etc.)
**Tissue**
- Consent forms, collection processes, usage, patient follow-up procedures
**Clinical Trials**
- Development: input on design, informed consents, IRB representation
- Accrual: letters on clinical trials, presentations to patient groups
- Adherence: Support/guidance for patients, input for amendments
**Education**
- Forums and “training days” for patient advocate community
- Presentations in professional training courses (to scientific staff)
- Newsletters
**Patient Flow**
- Better clinic procedures to create more receptivity to clinical trials

- * Representative, but incomplete list

## So, What IS the PART Program?

**A program to help SPOREs translate effectively**
**Will develop around issues/activities that need to be tackled**
- Locally & nationally
**A “problem-solving” engine to build a coherent development**** system**
**High priority on keeping it interesting & fun!**
**Communication Methods**
- SPORE website: public side & private side (coming soon!)
- InterSPORE meetings & Working Groups
- Annual SPORE Investigators’ Workshop
- SPORE PI discussions (~2/year)
- Task forces
- Onsite assistance
- Conference Calls
- Emails

## Starting Places Even WITHOUT an Advocate Program

**Help us identify HIPAA impact on SPORE research**
- Follow tissue flow through your SPORE & document
**Help us gather clinical trial tools from your site(s)**
**Help us build an IRB Resource Bank**
- 1-2 trials that WERE successful & 1-2 that had issues with your IRB
- Identify reasons for both kinds of outcomes
**Send info to Deborah at **_[deborah@sporeadvocates.net](mailto:deborah@sporeadvocates.net)_** **** **
- (925) 736-8155, fax: (925) 736-2836, cell: (925) 260-1006
- We’ll post on private SPORE website
- See if patterns start to emerge!
**And If You Have Patient Advocates...**
**Share advocate successes with others**
- Fill out the SPORE Success Form (coming soon on SPORE website)

## Specific Examples of Patient Advocates in SPOREs

**SPORE Projects & Cores**
**Tissue Issues**
**Clinical Trials**
**SPORE Education**
**Genetic Privacy**

## Example #1

** ****SPORE Projects & Cores**

**UCSF BOP survey (n=27): Scientist view of advocates**
- Offer patient  experience & perspective
**Facilitate multiple communications**
- Focus discussion on **relevance**
**Won’t tolerate “turf” wars**
- Put a “face” on breast cancer
- Give a sense of purpose
**Ask questions others won’t**
- Support non-status quo ideas** **
- Foster community/public/national support
**Influence research into more translatable direction**

## Example #2

** ****Tissue Issues**

**Tissue/Outcomes/Informatics Cores**
- Helped develop consent & brochure now used throughout UCSF
- Query those in process when collection is low
- Identify solutions & help build a plan
- Have improved the way process works
- Input on patient follow-up process that improved responses
**Tissue Use Committee**
- Voice in who gets it & how it will be used
- Discuss privacy issues

**Every researcher needs it, but never seems to have**** the right kind!**

## Example #3

** ****Clinical Trials***

**Focus group assistance**
- Ovarian trial on QOL (support groups, etc.)
**Development/Design**
- Strategy meetings, Protocol Review Committees
- Patient flow improvements in clinics
**Helping get word out about them**
- Alert networks about specific trials
- “Woman to Woman Notes”
- Review patient materials
- Newsletters & meetings (support groups, etc.)
**InterSPORE Breast MRI/Marker Study**
- Patient advocates at locations offer trial help once enrolled
- Helps w/adherence to a non-treatment trial
- Coordinated through UCSF (Peggy Devine)

- *SPORE & non-SPORE clinical trials

## Example #4

** ****SPORE Education**

**2-way Education**
- Scientists:
- Sessions in BC101 for postdocs & fellows
- Ongoing science meetings (questions, presentations, etc.)
- Patient/Communities
- Community presentations
- Training Day: science concepts & interaction w/researchers
- CaP101 for new prostate cancer patients at UCSF
- UCSF AVON Symposium (scientists & advocates)
- Genetic Promise & Practice
**Newsletters**
- To community & scientific audiences

## Example #5: Genetic Privacy  A Reality Check(point)

- DNA = Human Bar Code
- Everybody wants it, Affects Everyone, even Family

**Pros:**
- Medical “miracles”

**Cons:**
- Others knows all

- How Do We Protect People & Still Do Research?

- Copyright, 1999-2003, PAIR: Patient Advocates In Research

## Thank You’s to...

**AVON & NCI for the opportunity**
**UCSF Breast SPORE & Advocacy Core**** for support, insights & patience**
**SPORE Patient Advocates**** for time & commitment**
**SPORE PIs for openness to include patient advocates**
**You for your interest**