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).

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

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

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

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?

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

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”

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

“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

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?

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

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