Has your doctor or other health care professional ever talked to you about medical research? 22%. 70%. 8%. Yes. No. Not
How to Get Involved in Research as a Survivor February 10, 2017 12:00PM–1:00PM EST Facilitated by: Sarah Raskin, PhD, MPH Research Scientist, Patient Reported Outcomes
Agenda • Welcome and introductions (5min) • Brief introduction of the topic (5min) • Brief presentations by expert speaker (10min) – Sara Chang, Research!America – Debra L. Madden, Survivor/Advocate – Cindy Cisneros, Survivor/Advocate • Open Discussion (20min) • Wrap up
Learning Objectives • Learn how patients and advocates can influence research from the initial development of questions to translation into clinical practice • Understand how to become an informed consumer of medical care and developing “critical health literacy” • Discuss how cancer survivors can identify research advocacy opportunities • Describe the value of incorporating survivors’ voices into the research process
Your Role in Research February 10, 2017
Sara Chang, Director, Policy and Advocacy
Research!America’s Mission Making research to improve health a higher national priority Research!America is an innovator in advocacy for research
Majority Agree that Basic Research is Necessary Do you agree or disagree with the following statement? “Even if it brings no immediate benefits, basic scientific research that advances the frontiers of knowledge is necessary and should be supported by the federal government.” 9% Strongly agree 5% 10%
43%
Somewhat agree Somewhat disagree Strongly disagree
34%
Not sure
Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in June 2016.
Research
Drug Development Pipeline
Put a Face on Research: YOURS!
Wide Majority of Americans Have Heard of Clinical Trials One kind of medical research is often referred to as a clinical trial. In this, volunteers choose to participate to test the safety and effectiveness of certain treatments, drugs or devices. Have you ever heard of a clinical trial?
5% 15%
Yes 80% No Not sure
Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in May 2013.
Most Americans Have Not Participated in Clinical Trials Have you or anyone in your family ever participated in clinical trials?
Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in May 2013.
Seven in 10 Say Practitioners Don’t Talk About Medical Research Has your doctor or other health care professional ever talked to you about medical research? 8% 22% Yes No Not sure
70% Source: A Research!America poll of U.S. adults conducted in partnership with Zogby Analytics in May 2013.
Porter’s Principles •
Our simple guide for meetings with Members of Congress, as well as advocacy messages for making research to improve health a higher national priority.
http://www.researchamerica.org/advocacy-and-action
Advocate
Preparation: Part I •
Research your policymaker: •
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Does he/she sponsor events for constituents (coffees, lunches, Town Hall, etc) Committee assignments? Leadership? Find statements made, positions taken or bills introduced with which you agree Is funding for research addressed on his/her website?
Preparation: Part II •
Know Your Ask(s): •
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Include NIH funding in your appropriations requests Please complete the appropriations process this year Join a Congressional Caucus (R&D Caucus)
Phone Calls and Letters •
Call, Email or Letter
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Start with a “Thank You”
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Ask to speak with the legislative assistant handling health (NIH) If you can’t get past staff assistant, ask him or her to share your name, the town you’re from, and your comment with the policymaker Ask for a written response
Meetings •
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Most offices only take meetings with constituents Call and ask to schedule a meeting about health and NIH funding For in-state meetings, ask to speak with district or state director
Thank You! Sara Chang Director, Policy and Advocacy
[email protected] 571.482.2726
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www.researchamerica.org
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www.facebook.com/researchamerica.org
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www.twitter.com/researchamerica
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www.youtube.com/researchamerica
Becoming a Cancer Research Advocate: How to Begin? Debra Madden Cancer Research Advocate, Patient Representative, 2x Cancer Survivor
What are some agency- or organizationspecific roles in which survivors and advocates can serve?
National Cancer Institute (NCI) • Patient Advocate – Advise on strategic directions or policy issues – Design or enhance programs and activities – Develop and review clinical trial protocols, research proposals, and projects – Evaluate and share research findings
• Learn more at: https://www.cancer.gov/aboutnci/organization/oar/research-advocacy
U.S. Food & Drug Administration (FDA) • Patient Representative – Review drugs, devices, and biologics being considered for approval, as voting member of advisory committees – Give input early in the regulatory process – Participate in FDA public workshops
• Disease-specific, including a number of cancers • Learn more at: www.fda.gov/ForPatients/PatientEngagement
Congressionally Directed Medical Research Programs (CDMRP) • Consumer Reviewer – Peer review grant applications as voting members – Programmatically review grant applications as voting members
• Disease-specific, including a number of cancers • Learn more at: www.cdmrp.army.mil/
Patient-Centered Outcomes Research Institute (PCORI) • Many opportunities available! – Suggest a patient-centered research question – Provide a formal public comment on PCORI’s work – Review funding applications or research result reports – Serve on an Advisory Panel – Become a PCORI Ambassador
• Learn more at: www.pcori.org/get-involved
Cochrane Global Network • Many opportunities available! – Help prepare a Cochrane Review – Help translate Cochrane evidence – Help screen health records with Cochrane’s citizen science platform, Cochrane Crowd
• Learn more at: www.cochrane.org/getinvolved/donate-your-time
How can survivor/advocates become educated in preparation to serve in research roles?
National Breast Cancer Coalition (NBCC) • In-person science and advocacy intensives – Project LEAD® Institute – Clinical Trials Project LEAD®
• ONLINE Center for NBCC Advocacy Training – “Best of” summits, workshops, and Project LEAD®
• Learn more at www.breastcancerdeadline2020.org/get-involved/
U.S. Food & Drug Administration (FDA) • Expert webinars and presentations • Patient Network & Network Newsletter • Patient-specific e-mail list updates • Information on Public meetings • Learn more at: www.fda.gov/ForPatients
Research Advocacy Network • Advocate Institute – Shares essential tools and resources to comprehend research studies and communicate effectively – Channels advocates’ passion into effective interactions with the research community
• Advocate Resources and Training Materials • Learn more at: www.researchadvocacy.org/
Tips for Analyzing Research Studies and Health News Reporting • Cochrane United States’ Online Course – Learn more at: www.us.cochrane.org/understandingevidence-based-healthcare-foundation-action
• Health News Review – Learn more at: www.healthnewsreview.org/
• Association of Health Care Journalists – Learn more at: www.healthjournalism.org/slimguides
Thank you!
Yes, You Can! Cindy Cisneros Advisory Board Chair GW Evaluating Cancer Survivorship Care Models Study
Life as a Cancer Survivor • • • •
Making a difference Exploring pathways of involvement Taking the first step Being patient with the process
Getting Involved with Research – What are the Challenges? • • • •
Communication The ‘right’ education background Trust in your story Finding appropriate opportunity to participate
Why Your Voice MattersBecause it Does • • • •
First-hand knowledge key Policy requires input from all stakeholders Research must be informed by practice Survivors’ voice equally valid
Serving on a Study Advisory Board • Promote patient-centered perspective • Ensure survivor voice is integrated throughout the length of the research study • Provide guidance and feedback, as appropriate, on the project aims and tasks
Suggestions for Getting Involved • Contact local cancer or wellness center • Ask practitioners about research projects • Consider serving as a federal project reviewer • Join national advocacy association • Blog/tweet responses to new research findings
Yes, You Can!
For any questions, please contact Cindy Cisneros at
[email protected]
Discussion
Participate in Survivorship Care Models Study Results Forum bit.ly/GWResults2
Share your feedback: GATE Survey bit.ly/GATEAnnualSurvey
Resources to Explore… • • • • •
Association of Health Care Journalists: – http://healthjournalism.org/slimguides Breast Cancer Deadline: – http://www.breastcancerdeadline2020.org/get-involved/ Cancer Net: – http://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate Congressionally Directed Medical Research Programs (CDMRP): – www.cdmrp.army.mil/ Cochrane: – http://www.cochrane.org/ – http://us.cochrane.org/understanding-evidence-based-healthcare-foundation-action
Resources to Explore Cont… • •
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National Breast Cancer Coalition: – www.breastcancerdeadline2020.org/get-involved/ National Cancer Institute (NCI): – https://www.cancer.gov/about-nci – https://www.cancer.gov/research/areas/clinical-trials/nctn – https://www.cancer.gov/about-nci/organization/oar/become-advocate ECOG-ACRIN Cancer Research Group: – http://ecog-acrin.org/ National Coalition for Cancer Survivorship: – https://www.canceradvocacy.org/cancer-policy/cancer-policy-roundtable/ Patient-Centered Outcomes Research Institute (PCORI): – http://www.pcori.org/get-involved
Resources to Explore Cont… •
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Research Advocacy Network: – http://researchadvocacy.org/research-engagement – http://researchadvocacy.org/general-resources/involving-patientscancer-research-overview-methods-and-strategies – https://twitter.com/RANAdvocate Research America: – http://www.researchamerica.org/advocacy-and-action U.S. Food & Drug Administration: – http://www.fda.gov/ForPatients/About/ucm412709.htm – http://www.fda.gov/ForPatients/default.htm
Thank you!
[email protected] @GWCancer www.cancergate.org
