Welcome

National Conference on Engaging, Patients, Families and Communities in all Phases of Translational Research to Improve Health

Logistics

ONSITE DUKE STAFF

Lloyd Michener Brenda Lugar Ann Lane Angie Arrington Marcie Fuson

CONFERENCE BOOKLET Located at the registration table SOCIAL MEDIA

Follow us on Twitter @Duke_CFM and tweet with us during the conference using #CEnR2014

RESTROOMS

Located around the corner of Salon A (where we are now), if you exit Salon A-C, make a right and you’ll see the signage for the restrooms

Breakfast, Lunch & Snacks (Food)

Salon D • Located adjacent to Salon A-C

Poster Abstracts Presentation Salon D

• Poster and Presentation with informal discussions during lunch

BREAKOUT ROOM ASSIGNMENTS Salon A-C - General Session Room

• Located on the lower level of the conference center, right at the bottom of the escalators

Brookside A - Breakout Room

• Located on the lower level of the conference center, right at the bottom of the escalators

Brookside B - Breakout Room • Located on the lower level of the conference center, right at

the bottom of the escalators

All Presentation Materials and Slides Will Be Posted on the Conference Website at https://www.dtmi.duke.edu/ce-workshop Presenters, Please Leave Your Materials at the Registration Desk

CONFERENCE AGENDA “Engaging Patients, Families and Communities in all Phases of Translational

Research to Improve Health” August 21-22, 2014

Thursday, August 21, 2014 8:00–8:30 Welcome and Overview: Lloyd Michener, MD 8:30 Plenary I:Engagement of New Voices and Perspectives in all Phases of the Research Process Speaker: Christopher P. Austin, MD, Director, National Center for Advancing Translational Sciences 9:30 Keynote: “Nothing About Us Without Us:” Community Engagement in HIV Research: Judith Auerbach, PhD, Consultant and Adjunct Professor, School of Medicine, UCSF 10:30 Break 10:45 Plenary II: Engagement of New Voices and Perspectives in the Translational Research Process: The Cystic Fibrosis Story. Robert Beall, PhD, CEO and President, Cystic Fibrosis (CF) Foundation 11:45 Networking Lunch/Poster Discussions

CONFERENCE AGENDA “Engaging Patients, Families and Communities in all Phases of Translational Research

to Improve Health” August 21-22, 2014

1:00 Breakouts – 2:40 Plenary III: Translational Research at the Community Level: New Perspectives, New Questions, New Solutions. Grace Damio, Director of Research and Service Initiatives, Hispanic Health Council (HHC), Hartford, CT 3:40 Break 3:50 Panel I: Methods for Engaging the Communities in Translational Research. Panelists: Breakout Group Facilitators 4:50 Closing: Lloyd Michener, MD

CONFERENCE AGENDA “Engaging Patients, Families and Communities in all Phases of Translational

Research to Improve Health” August 21-22, 2014

Friday, August 22, 2014 8:00 Welcome and Introduction: Sergio Aguilar-Gaxiola, MD, PhD, University of California, Davis Speaker: Petra Kaufmann, MD, Director, Division of Clinical Innovation, National Center for Advancing Translational Sciences 8:30 Plenary IV: Partnering with Patients, Practices, and Communities in Clinical and Implementation and Dissemination Research. Ann Bonham, PhD, Chief Scientific Officer, Association of American Medical Colleges 9:40 Breakouts- 11:20 Panel II: Methods of Engaging Communities in Translational Research II. Panelists: Breakout Group Facilitators 12:20 Adjournment: Sergio Aguilar-Gaxiola, MD, PhD, University of California, Davis 12:30 Box Lunch/Poster Dismantle

2014 C E Conference Planning Committee Members

SERGIO AGUILAR-GAXIOLA, MD, PHD Professor of Clinical Internal Medicine Director, Center for Reducing Health Disparities University of California Davis School of Medicine PHILIP M. ALBERTI, PHD Senior Director Health Equity Research and Policy Association of American Medical Colleges DEBORAH COLLYAR President Patient Advocates In Research (PAIR) 3687 Silver Oak Place Danville, CA 94506 LINDA B. COTTLER, PHD, MPH Associate Dean for Research and Planning College of Public Health and Health Professions Dean's Professor and Chair-Department of Epidemiology College of Public Health and Health Professions and College of Medicine

MILTON “MICKEY” EDER, PHD Department of Family Medicine and Community Health University of Minnesota

WILLIAM N. ELWOOD, PHD Opportunity Network Facilitator Office of Behavioral and Social Sciences Research(OBSSR) National Institutes of Health

SHEIILA FLEISCHHACKER, PHD Senior Public Health and Science Policy Advisor NIH Division of Nutrition Research Coordination National Institutes of Health Department of Health and Human Services Two Democracy Plaza, Room 635 6707 Democracy Boulevard MSC 5461 Bethesda, Maryland 20892-5461

2014 C E Conference Planning Committee Members

CHRISTINE M. HUNTER, PHD, ABPP Director of Behavioral Research Division of Diabetes National Institute of Diabetes and Digestive and Kidney Diseases

IDA JOHNSON-SPRUILL, PHD, RN, LISW, FAAN Associate Professor College of Nursing Medical University of South Carolina DONNA JO McCLOSKEY, PHD, RN, FAAN Program Director Division of Extramural Science Programs (DESP) Office of Extramural Programs (OEP) National Institute of Nursing Research

J. LLOYD MICHENER, MD Professor and Chair Department of Community and Family Medicine Director, Duke Center for Community Research Duke University Medical Center FERNANDO PINEDA-REYES CEO/CREA Results Chief Executive Officer/Promotor de Salud CREA Results (Community+Research+Education+Awareness=Results) MERYL SUFIAN, PHD Program Officer Division of Clinical Innovation National Center for Advancing Translational Sciences (NCATS) National Institutes of Health (NIH) One Democracy Plaza 6701 Democracy Blvd. Bethesda, MD 20892-4874

The “hard core” committee members from 2008 on:

• Sergio Aguilar-Gaxiola, MD, PhD • Donna Jo McCloskey, PhD, RN, FAAN • Lloyd Michener, MD

From 2009 on:

• Mickey Eder, PhD

Engaging Patients, Families and Communities in all Phases of Translational Research

to Improve Health

J. Lloyd Michener, MD

Professor and Chair

Department of Community and Family Medicine

Director, Duke Center for Community Research

Duke University Health System

National Community Engagement Conference

Bethesda, MD

August 21, 2014

2008 2009 2010 2011 2012 2013 2014

Community Engagement and the CTSAs

A rapid walk through seven years of work

• Community Engagement Key Function Committee started • First face to face meeting

- Theresa Cullen, MD, MS Indian Health Service

- Joe V. Selby, MD, MPH Kaiser Permanente

2008 2009 2010 2011 2012 2013 2014

Accelerating the Dissemination and Translation of Clinical Research into Practice

- Joy Bramble; The Baltimore Times

- Ann Macaulay, MD; McGill University, Quebec, Canada

- Treena Delormier, Kahnawake Schools Diabetes Prevention Project, Quebec, Canada

- Mary Wakefield, RN, PhD Health Resources and Services Administration

2008 2009 2010 2011 2012 2013 2014

Improving Health WITH Communities: The Role of Community Engagement in Clinical and Translational Research

2008 2009 2010 2011 2012 2013 2014

Partnering to Improve Health: The Science of Community Engagement

- Ida Spruill, PhD; Medical University of South Carolina

- Sergio Aguilar-Gaxiola, MD, PhD; University of California, Davis

- Todd Park, Chief Technology Officer, U.S. Dept. of Health & Human Services

- Lt. General Bruce Green, MD Surgeon General, U.S. Air Force

2008 2009 2010 2011 2012 2013 2014

Using IT To Improve Community Health: How Health Care Reform Supports Innovation

2011

2008 2009 2010 2011 2012 2013 2014

• On line English and Spanish:

http://www.atsdr.cdc.gov/communityengagement

• Print copies:

www.atsdr.cdc.gov/communityengagement/pce_printcopy.html

Follow the Principles of Community Engagement

Principles of Community Engagement

2008 2009 2010 2011 2012 2013 2014

What is a community?

A group of people united by at least one common characteristic.

Such characteristics could include geography, shared interests, values, experiences, or traditions.

Principles of Community Engagement, 2nd edition Clinical and Translational Science Awards Consortium

Department of Health and Human Services June 2011

- Maria C. Freire, PhD Albert and Mary Lasker Foundation - Susan Kunz, MPH, Health Promotion and Disease Prevention, Community Health Center, Nogales, Arizona - Kathy Burlew, PhD, Professor University of Cincinnati NIDA Clinical Trials Network - Leandris Liburd, PhD, MPH, MA Office of Minority Health and Health Equity, CDC

2008 2009 2010 2011 2012 2013 2014

Methods, Metrics and Outcomes: Evaluating the Success of Community Engaged Research

Released: June 25, 2013

The CTSA Program at NIH Opportunities for Advancing Clinical and Translational Research

2008 2009 2010 2011 2012 2013 2014

Community Engagement:

“the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people” The CTSA Program at NIH: Opportunities for Advancing Clinical and Translational Research

Principles of Community Engagement, Second Edition. Washington, DC: U.S. Government Printing Office, 2011

Ensure Community Engagement in All Phases of Research

NCATS and the CTSA Program should:

define community engagement broadly and use this definition consistently in requests for applications and communications about the CTSA Program

ensure active and substantive community stakeholder participation in priority setting and decision making across all phases of clinical and translational research and in the leadership and governance of the CTSA Program

define and clearly communicate goals and expectations for community engagement at individual CTSA level and across program and ensure broad dissemination of best practices in community engagement

explore opportunities and incentives to engage a more diverse community

Source: The CTSA Program at NIH - Opportunities for Advancing Clinical and Translational Research; IOM National Academy of Sciences, 2013

- Christopher Austin, MD National Center for Advancing Translational Sciences - Steven H. Woolf, MD, MPH Medical College of Virginia – Virginia Commonwealth University - Fernando Pineda Reyes, ED Community-Research-Education-Awareness (CREA) Denver, Colorado - Ahmed Calvo, MD, MPH, Health Resources and Services Administration (HRSA)

2008 2009 2010 2011 2012 2013 2014

Science of Community Engaged Research:

Future Directions

- Paula Yoon, SCD, MPH, Centers for Disease Control and Prevention

- Bechara Choucair, MD, MHA, Chicago Department of Public Health

- Christine M Hunter, PhD, ABPP, CAPT USPHS, National Institute of Diabetes and Digestive & Kidney Diseases

2008 2009 2010 2011 2012 2013 2014

Community

Health

Engagement

Operations Leadership

Assess: Know what your community assets are - providers, organizations,

Strategy Leadership

Identify critical partners needed to be at the table for this to work - NAACHO ASTHO, foundations (NBGH) and employers both as payers and enablers

Make sure communities have the information they need to identify priorities for themselves - identify positive deviance and prioritize what they want to work on

Operations Innovation

Create a community health improvement innovation fund/ marketing plan to foster innovation;

Strategy Innovation Use research grants and tools to help enable community involvement

Operations Culture

Understanding health is local; develop community action plans built WITH communities

Strategy Culture

Focus on children: Healthy food choices (thanks, cookie monster for eating more fruits & veggies); healthy activities; get parents on board

Celebrate and build on the “bright spots" already in the community; those innovative strategies are most likely to succeed

Use the concept of Town Hall - literally or figuratively - to help define health, determine needs; leaders engage and focus on how best to communicate with community

resources, leaders, community health needs, health strategy.

Develop/Execute: Unified community action plan with all players based on assessment tied to outcomes. Coordination, collaboration, and facilitation. Eliminate unecessary duplication.

Sustain: Require state/federal strategic support; share best practices; identify/develop leaders; re-evaluate action plan/outcomes

include a school challenge to involve children and an annual award.

Break down goals/strategy into smaller steps that a community can understand. Allow a regional/local plan based on culture/values and understanding of local health issues.

Provide analytics to community health teams to inform strategies

Create a community collaborative with regional teams/champions to collect best practices and share knowledge; expand regional teams to include a variety of stakeholders.

not FOR them. It's about stakeholder buy-in. Maximize community accepted norms and local leaders

Convene and align; utilize diverse groups to host/frame discussions onagency strengths and weaknesses. Build swim lanes and connect local - state - federal as well as in the private sector

Tactics Leadership

Leaders must be from community: parents, church, employers, school boards, risk takers. There must be network leadership who developed trust with community

Use proactive metrics to assess community stakeholders in order to determine who to engage

Engage business community and show how health improves their bottom line

Tactics Innovation

Education is key - starting early and continuing throughout life. Engage the community at all levels to build and educate on health. Use local sports stars, celebrities to help motivate youth

Incentivize successful ideas and practices, e.g., school competitions with programs like the President's Fitness program. Leverage the media to tell the story of health and healthy communities

Tactics Culture

Cultural change has to start at the community level. Use community advocates (teachers, grandmothers, clergy, colonel's, etc.)

Use what the literature says works: targeted behavior change interventions; social media, etc.

Federal Interagency Health Leadership Roundtable August 13-14, 2013

- Christopher P. Austin, MD, National Center for Advancing Translational Sciences

- Judith Auerbach, PhD, UCSF - Robert Beall, PhD, Cystic Fibrosis Foundation - Grace Damio, Hispanic Health Council, Hartford, CT

- Ann Bonham, PhD, Association of American Medical Colleges

2008 2009 2010 2011 2012 2013 2014

Engaging Patients, Families and Communities

in all Phases of Translational Research to Improve Health

Accelerating

Partnering

Partnering

IT

Evaluating

Future Directions

All Phases and Communities

2014 2008

NIH COLLABORATORY: 8/15/2014

TOPIC: Partnering and Engaging Patients in Clinical Research SPEAKER: Megan O’Boyle, Principal Investigator Phelan-McDermid Syndrome International Registry and Phelan-McDermid Syndrome Data Network https://www.nihcollaboratory.org

”Show me your data and I’ll show you mine”

What we have learned: • People are very interested in participating in research • They want to be participants, not ‘subjects’ • Having people with the illness/risk factor/of the community engaged in research changes the questions asked, the methods used, and the ‘uptake’ of the results • Engagement takes time • Relationships matter - communications are critical • Consent processes, surveys and registry enrollments

can be burdensome

What we don’t know: • How to organize and support patient/community engagement across the research spectrum; within institutions, or consistently across studies • How to track institutional and overall progress

What we need to do next: • Integrate and coordinate with National Center for Advancing Translational Sciences

• Ensure that our patient/family/community members are at the table and are heard • Embrace and engage with diverse communities across the full spectrum of the translational enterprise

• Establish best practices in engagement, and metrics for their assessment