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So you Want to be an advocate? How advocacy groups and individuals can promote & educate others about cancer research

Karen Malkin Lazarovitz Founder BRCA Sisterhood Founder Montreal BRCA Support group Local Leader P.ink Day Montreal Public Speaker

Types of Advocacy

² Education, Outreach and Support

² Public Policy / Legislative & Regulatory

² Research Advocacy

ALL are critical to the

HBOC

community!

What is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy or patients, survivors, and care givers. The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders. The terms patient advocate and patient advocacy can refer both to individual advocates providing services that organizations also provide, and to organizations whose functions extend to individual patients. Some patient advocates work for the institutions that are directly responsible for the patient’s care. Typical advocacy activities are the following: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, support and education of patients, survivors and their care givers. Patient advocates give a voice to patients, survivors and their care givers. ~ Wikipedia

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It’s important to empower, inform and educate the people you speak with, not frighten them.

Qualities to be a successful advocate

Passion Honesty

Good communication skills Empathy

Sensitivity and understanding Objectivity

A drive for knowledge

Being a patient advocate requires empathy not a specific solution.

It’s really important to be

approachable. I am often asked all types of questions and being able to answer honestly and truthfully allows others to feel comfortable.

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Who to reach out to when making connections

Doctors Hospitals

Genetic Counsellors Genetic testing companies

Patient advocates Support groups and other

Cancer organizations Local Media

I personally find humor helps, especially when

dealing with such serious issues.

Patient advocacy goals

Provide support and information

Raise public awareness Education in regards to

genetic testing and counselling and its

importance Patient empowerment

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Social media helps create a larger reach

Why is patient advocacy so important?

Gives us control over our choices

Helps gain self confidence facing challenges

Allows you to reach out to others

Improves quality of life Creates control over our

decisions

You are not always going to understand what others are going through but allowing

them to be honest and forthcoming instills a sense of

trust.

As an advocate, our role is not to agree with their decisions

but to be there to offer support for their choices. You should

never judge anyone.

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Advocacy is not about telling people what to do, it’s not about finding

answers for them. It is being able to provide all of the options and

information available to them so that they are able to make informed

and educated decisions for themselves based on what is best

for them.

There is no right way to handle things, only what is right for you.

- Karen Malkin Lazarovitz

So you want to be an advocate?

Patty Spears October 7, 2016 Orlando, FL

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Disclosures

Company Relationship

² Genentech ² Travel

² Pfizer ² Consultant

What Type of Advocate are You?

² Political ² Support ² Fundraising ² Research

Who are Cancer Patient Advocates in Research?

²  People who have had cancer, been a care-giver of someone with cancer or affected by someone who had cancer.

²  People who were motivated to reach out to others also suffering from cancer.

²  People who are motivated to make a broader impact by self-educating in understanding the science behind cancer and its treatment.

²  People interested in research become trained in scientific methodology, research design, basic statistics, etc…

“…more seasoned advocates can bring a more sophisticated understanding to the research enterprise…constantly

grounded …in patient experience”

Mayer, 2012

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Patients bring urgency…

Quote from a Patient Advocate

“Not only does my face

and my story inject reality into the cancer research

enterprise, it seems to add some sense of urgency…

We need to get the job done now without quibbling and without egos.” ~ Kate

in Mayer, 2011

We still lose too many wonderful people to cancer – too early We are in desperate need of better treatments…NOW

1942 - 2012

Kate Murphy

1934 - 2010

Bill Reboli

Advocacy in Research

² Basic Research ² Bench research in laboratories

² Translational Research ² Pre-clinical research in animal

models

² Clinical Research ² Clinical trials in patients

² Epidemiology Research ² Studies of associations in

populations

² Approval ² FDA panels

How do you become an advocate?

I’ll tell you my story: Becoming a RESEARCH ADVOCATE…

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BC

A pivotal event

Want to give back

Research luncheon

Lay Research Posters

Komen

Local

Board of Directors/

Education/grants

Komen

Local

AAADV CALGB/

Alliance

TBCRC CPC

Office of Heath Equity and Disparities

National Komen grant

review

Advocates in

Science SC

Komen Scholar

Stakeholder Reviewer

UNC

Patient Partner

ASCO

ODAC

Panels (2)

Guidance (2) TAP

UR tumor board

CCSC

Duke

Barbara Parker

SPORE

SPORE UNC

Patient Advocacy

Group

FDA

Pharma connecti

ons

BCSC

PCORI

Tips ² Start LOCAL (if you can) ² Cancer Organizations (e.g.

FORCE) always need volunteers

² Only participate if you know you can do it!

² When asked to participate – do the work, do it on time and contribute.

² Meet as many people as you can – those who can be mentors!

² Stay up to date ² Take advantage of training

opportunities

Research Advocacy Programs ²  FORCE Research Advocate

Training (FRAT) Program ²  Research Advocacy Network

Focus on Research Scholar Program

²  Komen Advocates in Science (AIS) Program

²  National Breast Cancer Coalition (NBCC)

²  YSC Respected Influencers through Science and Education (RISE) program

²  Fight Colorectal Cancer Research Advocacy Training and Support (RATS) program

Programs for research advocates providing trainings, resources and a

community of advocates learning together.

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FORCE Research Advocate Training (FRAT) Program

FORCE Research Advocate Training Program (FRAT) ²  A web-based course for patients

(consumers) and other stakeholders ²  Limited knowledge about

hereditary cancers ²  Do not have advanced medical

or research training

²  Helps lay-people understand the research process so they can represent the hereditary breast and ovarian cancer (HBOC) community to scientists and in clinical and patient-centered outcomes research

Why is the FRAT Program Needed? ²  People affected by hereditary

cancer are significant stakeholders in cancer research and carry a disproportionate cancer burden

²  No other training program focuses on the HBOC community

²  Consumer input in cancer research is needed to guide direction, relevance, recruitment, and protections

²  FORCE and the University of South Florida are partners in the ABOUT Network, which provides many opportunities for consumer stakeholder involvement

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Why Participate the Research Process? ²  We still have much to learn about

HBOC and how to best manage cancer risk

²  Patients and their families deserve a voice in ensuring that research being funded answers our questions and considers our unique needs

FRAT Program Goals

²  Keep research priorities of importance to the hereditary breast and ovarian cancer community front-of-mind for researchers

²  Help define and refine patient-centered research questions that will help people make informed decisions about their health care

Why Participate in FRAT? ² To be an effective voice for

the hereditary cancer community, advocates need a basic understanding of:

²  the science behind cancer

² how clinical research works

² “behind the scenes” processes that drive medical research

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Trainings for Advocates ² Human Subject Protection

Training Certification

² US Cochrane Center: Understanding Evidenced-Based Healthcare

² Cancer Information and Support Network (CISN)

²  2015 online Webinars developed for National Clinical Trials Network Advocates by CISN

² Research Advocacy Network/Advocate Institute

² Glossaries (FDA, NCI, CISN, many)

Trainings at National Meetings ² Alamo Breast Cancer Foundation

at San Antonio Breast Cancer Symposium (SABCS)

² Scientist <-> Survivor Program at American Association for Cancer Research (AACR) Annual Meeting

² Focus on Research Scholars Program at American Society for Clinical Oncology (ASCO) Annual Meeting

² Accelerating Anti-cancer Agent Development and Validation (AAADV)

² Scholarships for Patient Advocates

Opening Session – learn about the S<->S program, AACR meeting and the science of cancer in a simplified but detailed presentation. Working Groups – small groups are given a topic to learn more about and present their findings to the entire class at the end of the meeting. Mentors – each group has a scientific and advocate mentor to help you navigate the meeting and guide your presentation. Special Interest Sessions – key scientific leaders present current topics to the advocates in special sessions.

Scientist<->Survivor Program

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Other Initiatives Involving Advocates in Clinical Research ² Clinical Trials Transformation

Initiative (CTTI)

² Multi-Regional Clinical Trials Center

² The Center for Information & Study on Clinical Research Participation (CSCRIP)

² FDA Patient Programs ² Patient Representative Program ² Patient Focused Drug

Development Program ² Patient Engagement Advisory

Committee

Research Advocacy Publications ² Cancer Research Advocacy: Past,

Present and Future. Jane Perlmutter et al. Cancer Research. 2013;73:4611-4615.

² Patient Advocates’ Role in Clinical Trials. Mira Katz et al. Cancer. 1 October 2012:4801-5.

² Swimming Upstream: An Advocate Reflects on Cancer Research and Social Realities. Musa Mayer, JCO. 2008. 26(16)2783-6

² Patient Advocacy in Research. Musa Mayer, 2011. 4(2) 69-71.

² Seeking What Matters, Patients as Research Partners. Link Musa Mayer. Editorial. Patient 2012:5 (2): 71-74.

What is important to me?

² Patient Reported Outcomes (PROs)

² Data Sharing ² Change.org (http://

tinyurl.com/sharethedata) ² Patient-Centered Clinical

Trials ² Real World Trials

~find your passion~

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You are an important part of the HBOC community.

You can make a difference!

So you want to be an advocate?

Cheryl Jernigan

Patient Advocate in Research

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Ø A patient perspective is created when a person goes through personal or professional experience with the breast cancer.

Ø A collective patient perspective is

created when the person has knowledge of others’ disease experiences and conveys this collective patient perspective rather than just their singular experience.

In research advocacy, a “collective” patient

perspective is essential!

What is it like to be a research advocate?

A personal perspective

ü  Preparing for future directions

Disease-site => Pathways

“Once you make a

decision,

the

universe conspires

to

make it happen.”

~ Ralph Waldo Emerson

ü Educating/Networking/Supporting

ü Raising funds and friends for research

ü Participating in peer-review

ü Influencing public policy

ü Participating in research policy development

ü Participating in research design

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Insights gained…

ü Seek out opportunities!

ü Nurture your passion for learning

ü Step out of your comfort zone…early & often! ü Build bridges…

ü Seek FIRST to understand ü Ask questions. ü Strive to be impeccable/dependable in word & deed.

ü Do your homework AND establish YOUR goals for each meeting, project, and relationship

“The first step to

getting

the things you

want out of life:

-Ben Stein

ü What is/are my personal mission & goals?

ü How much time do I have?

ü Do I enjoy continually learning/educating/improving myself?

ü What constituency connections do I have?

ü How do I get started on this journey?

Decide what you want.”

What is my ?

²  Engaging Patient Voices…Patient-Energized Research ²  The Call to ARMs ²  PIVOT…Patient Investigator Voices Organizing Together

²  Sharing Knowledge…Research Results & Data ²  MRCT – Sharing Results with Participants ²  PCORnet/Greater Plains Collaborative (GPC)

²  Cancer Collaborative Research Group

²  Creating Patient-Centered Clinical Trials ²  Financial Toxicity ²  CTTI - Informed Consent ²  Medical Heroes Clinical Trial Participants!

Bringing research back to its reason for being…Improving how patients, feel, function & survive

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…

Advocates, Researchers & Mentors …an initiative of Susan G. Komen Advocates in Science (AIS)

Purpose: • Build & cultivate productive &

lasting AdvocateóResearcher relationships

• Assess what worked well & what could be improved

to achieve effective, mutually rewarding long-term relationships

Cultivating a future

of patient-energized &

centered research and researchers!

Building & Cultivating meaningful relationships…

²  Common goals in the relationship

Key beliefs & principles: ²  Mutual respect of time,

qualifications, perspective…allowing sufficient time to mutually understand, modify, integrate perspectives, and effectively communicate with each other

²  Mutual benefit by working together & co-learning

Some common sense guidance:

Building advocateóresearcher relationships to strengthen research

Building AdvocateóResearcher

Relationships Resources/Tools

² Building AdvocateóResearcher Relationships to Strengthen Research

² Testimonials/Stories demonstrating successful AdvocateóResearcher Relationships (Available on request.)

² Suggestions for Patient Advocate Involvement Plan

² Patient Advocate Letter of Support ² Webinars:

² Advocates & Researchers Working Together https://youtu.be/1YWqTggKs-o

² The Call to ARMs https://youtu.be/wUEi-RN2kwc

² Guidelines for Advocate Involvement http://sgk.mn/2ptTCVS

² Writing a Lay Abstract

These documents were included in the handouts for this session.

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What is PIVOT? ²  An initiative to infuse greater community and

patient engagement into all aspects of the Cancer Center

²  An evolving community of patients, families and caregivers learning and working with researchers/investigators

Why do we need PIVOT? ²  Patients, caregivers and communities need

to inform, collaborate, support and shape cancer research to better serve patients

How will PIVOT work? ²  Patients, families and caregivers will bring

their lived experiences and a collective patient perspective to all stages of the research process

Vision

Patients, families, caregivers and researchers

accelerating innovative approaches

to re-define cancer research together!

Patient-centered research

Impact of Financial Toxicities$$$

Ø  69% of Americans have less than $1000 in savings

Ø  Cancer survivors… 2.7 times more likely to file for bankruptcy than individuals without a cancer history

Ø  2007 study showed… Ø  62.1% of all bankruptcies have a medical cause Ø  Most medical debtors were well educated & middle class Ø  75% had health insurance

Ø  2001-2007… Bankruptcies attributable to medical problems rose by 50%

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Financial Toxicities & our aging population…

Ø  Medicare covers only about ½ of total health care costs!

Ø  Drug costs…no out-of-pocket limits …FOREVER coinsurance & the gapping Part D “Donut Hole”

Note: This is only U.S. data.

Ø  About 50% of those diagnosed with cancer are 65 & over Ø  Median age of breast cancer diagnosis: 62 Ø  Highest breast cancer incident rates are in women >70

Ø  Medical expenses: 2nd largest expense in retirement Ø  4 out of 5 people cannot

accurately estimate how much they expect to pay for healthcare in retirement

Ø  The average 65-year-old couple will spend $295,000-$392,000 over a 20-year retirement

Ø  Health care expenses are increasing at 3x the rate of inflation

Patient-centered research …Impact of Financial Toxicities Articles. Studies. Links. ² More stats…

² NCI: Financial Toxicity & Cancer Treatment http://bit.ly/2p6Q88e

² Cost of Cancer Care: Financial Toxicity Facts (University of Chicago) http://bit.ly/2oYVqr6

² “Financially toxicity is a clinically relevant patient-centered outcome.” http://bit.ly/2p9BhLb

² Not Just Nausea And Vomiting: Cancer Docs Now Worry About 'Financial Toxicity’ http://wbur.fm/2moJ1YB

² ‘It’s Not An Even Playing Field’: How Financial Instability Takes A Toll On Cancer Patients http://wbur.fm/2kLwv7V

² The National Health Council Value Framework Get-Ready Checklist for Patient Organizations http://bit.ly/2pGas2j

² “50 Health Issues that Count as a Pre-existing Condition”, TIME/Money, May 04, 2017 http://ti.me/2pM7D1o

² 

For your easy reference,

these are listed in this

session’s handout:

Research Advocate

Training & Resources

Sharing Knowledge …Research Results & Data

PCORnet National Patient-Centered Clinical

Research Network http://bit.ly/1vsmDzT

v Greater Plains Collaborative

(GPC) http://bit.ly/2p71b1d v FORCE: The ABOUT Network

http://bit.ly/2pyO2Bz v Cancer Collaborative

Research Group http://bit.ly/2q0048l

The ABOUT Network:

Your Chance to Drive Hereditary Cancer Research

TOMORROW: 11 AM-12:25PM, Grand Cypress Ballroom 1

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ü Desire to make things better for patients

ü Communication and critical thinking skills

ü Ability to represent “all” patients …not just your story ü Willingness to learn the basics of

science, treatment strategies, & the

research process

ü Ability to work collaboratively with others

ü Ability to honestly self-evaluate to improve your effectiveness “Your success, as an

advocate,

is only as strong &

enduring

as the relationships

you build & cultivate.”

² The Emperor of All Maladies: A Biography of Cancer, by Siddhartha Mukherjee

² The Immortal Life of Henerietta Lacks, by Rebecca Skloot

² The Developing Genome: An Introduction to Behavioral Epigenetics, by David S. Moore

² Your Cells. Their Research. Your Permission?, by Rebecca Skloot http://nyti.ms/1UqCA19

² Covering Medical Research: A Guide for Reporting on Studies, by www.HealthNewsReview.org publisher Gary Schwitzer & published by the Association of Health Care Journalists.

² www.HealthNewsReview.org Check it out! May want to sign up for the Newsletter.

² Tips for analyzing studies, medical evidence & health care claims http://bit.ly/1U4sl4U

² MD Whistleblower http://bit.ly/2pVsDnh For your easy reference, these are listed in this session’s handout:

Research Advocate Training & Resources