1. Improving Your Advocacy Skills to Impact Big Data
Module 7
This training was partially funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (1492-RUF).

2. The following information has been developed with assistance and input from Jane Perlmutter, PhD – Founder of Gemini Group Consulting, patient advocate, and member of the BD4P Steering Committee.
This information does not constitute an endorsement by Gemini Group.
Disclosure

3. Describe the roles of patient advocates in big data projects
Apply and improve your advocacy skills
Develop an individualized plan to follow-up on this training (time permitting)
Module Objectives

4. Being an Excellent Advocate
Ensure two-way communication with a diversity of patients and patient groups
Listen and report back
All patients are the same, but each patient is unique
Be comfortable and participate
Be prepared and professional
Remember that you represent other patients
Continue to learn about the rapid changes in big data and the science of the disease(s) for which it will be used
Goals and expectations of other stakeholders
The research process
The technology
The “Key Opinion Leaders” (KOLs)
Don’t expect to become an expert, except about the diversity of patient issues
Ask questions
Being an Excellent Advocate

5. What is the Value of Asking Questions?
Asking questions can be intimidating, but it is important…
It helps you learn and actively participate in the meeting
It raises issues researchers may not have thought of, or be comfortable asking
It opens up discussion among knowledgeable people who may have different opinions on the topic
It gives researchers practice at discussing research in ways that are understandable to the public, including patients
What is the Value of Asking Questions?

6. Some suggestions for overcoming intimidation around asking questions:
PRACTICE
Recognize your ability and the important perspective that patient advocates can provide
Speak from the heart
Know your audience
Don’t feel obligated to talk if it has already been said
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.”
- Margaret Mead
Asking Questions

7. Advocacy “DOs & DON’Ts”
Represent a variety of patient perspectives
Focus exclusively on your experiences – don’t just represent YOU
Ask questions about things you don’t understand
Ask questions about your medical concerns
Understand expectations of your involvement
Expect to understand all of the technology and science
Ask for feedback
Expect all of your recommendations be heeded
Act professionally
Collaborate with other advocates to learn across sectors
Advocacy “DOs & DON’Ts”

8. Be opportunistic when you are starting out, and strategic later on
Understand and adapt to the host’s culture (i.e. academic, non-profit)
Clarify and meet (or exceed) expectations
Seek feedback
Keep learning
Subscribe to newsletters (e.g NIH/NCI and FDA Patient newsletters)
Read broadly
Push the envelope
Advocacy Advice

9. “Patients don’t have the luxury of patience” – Jane Perlmutter
“I need my say; I don’t always need my way” – Jane Perlmutter
“Under commit; over deliver” – Jane Perlmutter
“Think about not only what is the matter with the patient, but also what matters to the patient” – Sandra Finestone
“Not about me without me; don’t do it to me but do it with me” – AIDS Community
“Stories trump data; relationships trump stories; individuals trump organizations” – Patrick Sullivan
Advocacy Aphorisms

10. How are Patient Advocates Involved in Big Data?
Prioritize questions and research efforts that are important to patients
Participate as members of steering committees and advisory boards
Review informed consent documents and other educational materials
Speak about patient issues
Provide patient perspective on big data panels
How are Patient Advocates Involved in Big Data?

11. Resources for Continuous Learning
The Internet – Wikipedia, advocacy websites, etc.
Coursera and other online courses
Health data and disease-specific listservs, blogs, and newsletters
Industry meetings
Advocate scholarships may be available
The popular press and neighborhood bookstores
Other advocates and professional colleagues
Resources for Continuous Learning

12. Develop an Individualized Plan to Follow-up on this Training
Some questions/considerations to get started:
Which projects/types of projects that you heard about are of most interest to you?
Which issues are you most passionate about?
Do you know any researchers, advocacy organizations, and/or individual advocates who are already involved in big data?
Are there questions that you believe are important and could be addressed by big data?
Develop an Individualized Plan to Follow-up on this Training