Patient Engagement Advisory Panel January 14, 2015 Arlington, VA - - PowerPoint PPT Presentation

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Patient Engagement Advisory Panel January 14, 2015 Arlington, VA - - PowerPoint PPT Presentation

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Patient Engagement Advisory Panel January 14, 2015 Arlington, VA Patient Engagement Advisory Panel, January 14, 2015 Recap of Day 1, Overview of Day 2 Sue Sheridan, MIM, MBA, DHL Director of Patient Engagement Patient Engagement Advisory

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Patient Engagement Advisory Panel

January 14, 2015

Arlington, VA

Patient Engagement Advisory Panel, January 14, 2015

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Recap of Day 1, Overview of Day 2

Sue Sheridan, MIM, MBA, DHL Director of Patient Engagement

Patient Engagement Advisory Panel, January 14, 2015

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Agenda for Jan 14

9:00 – 9:15 a.m. Recap of Day 1, Overview of Day 2 9:15 – 9:45 a.m. Ambassador Program - Update 9:45 – 10:30 a.m. Pipeline to Proposal Awards - Update 10:30– 10:45 a.m. BREAK 10:45 – 11:15 a.m. Compensation Framework 11:15 – 11:45 a.m. Privacy / Data and Safety Monitoring Board / Institutional Review Board - Discussion 11:45 a.m. – 12:15 p.m. Call for topics 12:15 p.m. Meeting Adjourned LUNCH

Patient Engagement Advisory Panel, January 14, 2015

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Ambassador Program – Update

Aingyea Kellom, MPA Program Associate, Patient Engagement Suzanne Schrandt, JD Deputy Director, Patient Engagement

Patient Engagement Advisory Panel, January 14, 2015

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Objectives

Program Update Strategies for the Future: Action Plan

Patient Engagement Advisory Panel, January 14, 2015

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Program Update

Patient Engagement Advisory Panel, January 14, 2015

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Ambassadors by Stakeholder Group

To Date: 99 Have Completed the Ambassador Training

  • 82 individual and 17 organizational

6 17 15 2 9 21 23 4 2

5 10 15 20 25

Patient Engagement Advisory Panel, January 14, 2015

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Ambassadors by Ethnicity

5% 8% 13% 1% 68% 1% 3% 1%

Asian (Not Hispanic or Latino) Black or African American (Not Hispanic or Latino) Hispanic or Latino American Indian or Alaska Native (Not Hispanic or Latino) White (Not Hispanic or Latino) Native Hawaiian Prefer Not to Answer Two or More Races

Patient Engagement Advisory Panel, January 14, 2015

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Ambassadors by Region

30

28

19 16 6

Patient Engagement Advisory Panel, January 14, 2015

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17 Organizational Ambassadors by State

Organization State American College of Physicians PA American Heart Association CA American Occupational Therapy Association MD Association of Nurses in AIDS Care PA Association of Perioperative Registered Nurses CO Dia de La Mujer Latina NY Dia de la Mujer Latina (2 Representativas) TX and NY Epilepsy Foundation Central & South Texas TX FasterCures DC International Cancer Advocacy Network (ICAN) AZ Mercy Health Chicago IL National Association of Nurse Practitioners in Women’s Health WV National Patient Advocate Foundation (NPAF) CA Patient-Centered Primary Care Collaborative DC The American Academy of Neurology MN The S.T.A.R. Initiative IL University of New Mexico - Department of Psychiatry NM

Patient Engagement Advisory Panel, January 14, 2015

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Refined Individual and Ambassador Roles

Individual Ambassador: Individuals with a personal interest in PCOR, a desire to be involved in PCOR activities, and a commitment to inform others about PCOR Organizational Ambassador: A health or healthcare entity, typically represented by one or more individuals, that is interested in PCOR, is eager to partner in PCOR efforts, and has extensive reach into its networks Individual Ambassadors and Organizational Ambassadors are committed to the PCOR engagement principles of reciprocal relationships, partnership, co-learning, trust, transparency, and honesty.

Patient Engagement Advisory Panel, January 14, 2015

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Strategies for the Future: Action Plan

Patient Engagement Advisory Panel, January 14, 2015

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Strategy for the Future

Areas for Growth:

  • Aligning membership growth with scientific priorities, such as the conditions or

populations of focus in the pragmatic clinical trials

  • Working toward greater participation by our funded project teams
  • Increasing participation of patient and stakeholder organizations

Adding Value:

  • Facilitating more Ambassador Program activity
  • Increasing the use and benefit of social media
  • Identifying/developing incentives for individual and organizational participation

Opportunities for Cross-Fertilization:

  • Syncing Ambassador activities with work ongoing across PCORI
  • Collaborating with and learning from work going on across the healthcare

system, such as that done by PFACs, IHI, FDA, NQF, CMS, AHRQ, and others

Patient Engagement Advisory Panel, January 14, 2015

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Areas for Growth: Aligning with Science Priorities

Identify Science funding priority areas, with a particular focus on pragmatics Connect current Ambassadors to Science workgroups Recruit future Ambassadors aligned with funding priorities

Patient Engagement Advisory Panel, January 14, 2015

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Areas for Growth: Increasing Participation of Funded Projects

Begin a tiered invitation approach starting with familiar projects, then incorporating invitations from Engagement Officers during kick-off and interim calls Ensure Pipeline and Engagement Awardees are aware

  • f the opportunity to join

Include information about Ambassadors to unsuccessful applicants who are still eager to be involved

Patient Engagement Advisory Panel, January 14, 2015

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Areas for Growth: Increasing Organizational Involvement

Refine description of Individual and Organizational Ambassador role, including “value proposition” Promote involvement to our contacts through social media and other marketing Hold activities relevant to targeted patient and stakeholder organizations

Patient Engagement Advisory Panel, January 14, 2015

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Adding Value: Facilitating More Ambassador Program Activity

Update current Ambassador tool-kit materials Calendar of events

  • Ambassador-only monthly conference calls/webinars

[with compelling guest speakers]

  • PCORnet’s Grand Rounds: Rethinking clinical research

webinars

  • PCORI public webinars and events
  • Publicizing/sharing information about non-PCORI events

Newsletters Surveys and crowdsourcing opportunities

Patient Engagement Advisory Panel, January 14, 2015

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Adding Value: Increasing Use and Benefit

  • f Social Media

Gather lessons learned from current Ambassadors and patients or stakeholders involved in successful (non- PCORI) social media campaigns Develop a list of essential social media activity trackers to be incorporated into the transition to Chatter Encourage Ambassadors to promote the program through their social networks Plan and execute more frequent and energized social media activity

Patient Engagement Advisory Panel, January 14, 2015

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Adding Value: Incentives for Individual and Organizational Participation

Training (CME/CE credit, college credit, etc.) Connection to PCOR community and research partnership opportunities Recognition

Patient Engagement Advisory Panel, January 14, 2015

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Opportunities for Cross-Fertilization

Connect Ambassadors to PCOR opportunities:

  • Merit review
  • Various PCORI activities such as workgroups, funded

project activities, and advisory panel recruitment

  • Pipeline to Proposal application review
  • Contributions to the D&I Framework

Facilitate connections and active collaboration between these various initiatives Serve as a platform for shared learning and dialogue between diagnostic, population, or other affinity groups

Patient Engagement Advisory Panel, January 14, 2015

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Opportunities for Cross-Fertilization

Collaborate with and learn from work going on across the healthcare system, such as that done by PFACs, IHI, FDA, NQF, CMS, AHRQ, and others Connect with and learn from other programs similar to the Ambassador Program

Patient Engagement Advisory Panel, January 14, 2015

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Questions?

Patient Engagement Advisory Panel, January 14, 2015

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Pipeline to Proposals Awards – Update

Courtney Clyatt, MPH Senior Program Associate on Patient Engagement

Patient Engagement Advisory Panel, January 14, 2015

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Tier I Tier II

Tier III

PCORI Funding Announcement

Pipeline to Proposal Initiative Update Overview

PAPOs Contracted Letters of Intent (LOI) for Tier I Cycle 2 Tier I Cycle 2 LOI period closed on 12/23/14

  • Received 298 LOIs

Other activities NAPCRG presentation 11/7/14 End of Award Meeting for Tier I Cycle 1 Awardees

  • Snippets of video interviews

Strategic planning session with Engagement Team

  • SWOT Activity
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Pipeline Award Program Offices by Region

East - Health Resources in Action Midwest - Michigan Public Health Institute National - National Network of Public Health Institutes South - Georgia Health Policy Center West - Colorado Foundation for Public Health and the Environment

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Breakdown of LOIs Received by Region for Tier I Cycle 2

15% 22% 17% 24% 22%

Number of LOIs

East Midwest National South West

1) 46 – East 2) 64 – Midwest 3) 50 – National 4) 72 – South 5) 66 - West

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Other P2P Activities

NAPCRG Presentation P2P Webinar End of Award Meeting for Tier I Cycle 1 Awardees

  • Snippets of video interviews

Strategic Planning Session with Engagement Team

  • SWOT – Activity focusing on opportunities
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Video Interviews with Pipeline Awardees

  • Patient,

Katie Wilkes

  • Stakeholder,

Suzanne Pak

  • Researcher,
  • H. Bryant Nguyen
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Strategic Planning Session with Engagement Team

  • Affirming where P2P fits into the PCORI Research Enterprise
  • SWOT - focusing on opportunities moving forward
  • Tier III
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Opportunities

  • Align P2P with Science funding priorities
  • Improve communication about P2P
  • Program development

–Develop dissemination structure –Define Tier III –Cross pollinate with other areas of PCORI

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Align P2P with Science Funding Priorities

Course of action:

  • Identify Science funding priority areas
  • Develop targeted P2P funding announcements
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Improve External Communication about P2P

External

Course of Action:

  • Develop a national and regional targeted outreach plan

(aligned with science and priority patient/stakeholder communities)

  • Publish pre-engagement promising practices from P2P
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Program Development for P2P Course of action:

  • Develop and incorporate dissemination concept into P2P

structure

  • Strategically build out Tier III
  • Identify where and how P2P aligns with or contributes to other

PCORI programmatic areas (Ambassadors, Science, Engagement Awards, training, rubric development, etc.)

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Future Direction of P2P

  • Patient and other stakeholders groups will be strategically targeted for the Pipeline

to Proposal Awards Initiative (community clinics, junior researchers, underserved patient populations, rare disease)

  • Opportunities to cross-pollinate with other program areas in PCORI including

Ambassadors, EAs, training, learning networks, merit review and others that will be identified

  • Pipeline to Proposal Awards Initiative will be structured to incorporate

dissemination projects

  • Pipeline to Proposal Program Awards will be aligned with PCORI’s future research

funding priorities

  • Promising practices on community engagement and partnership development will

be shared with broader research community

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Program Timeline

Task Timeline

Welcome Inaugural Ambassadors – Patient Engagement Advisory Panel Saturday, September 21, 2013 Invite workshop attendees, advisory panelist, merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program September 24- October 1, 2013 Development and release of PCOR Science Training November 2013 Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Training Summer 2014 Conduct one-year program evaluation Fall 2014

15 Minute Break

Refreshments outside.

Patient Engagement Advisory Panel, January 14, 2015

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Compensation Framework - Finalization and Approval

Charlotte W. Collins, JD Chair, Compensation Subcommittee Suzanne Schrandt, JD Deputy Director of Patient Engagement

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Privacy / Data and Safety Monitoring Board / Institutional Review Board - Discussion

  • M. Suzanne Schrandt, JD

Deputy Director, Patient Engagement

Patient Engagement Advisory Panel, January 14, 2015

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Goals

Provide a quick refresher on IRBs, DSMBs, and privacy concepts Share updates from our work Discuss the potential for forming a subcommittee and the functions of such a body

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Institutional Review Boards

What they are/what they do Unique elements of PCORI-funded research that may be new to IRBs What we are learning from our portfolio Ideas for providing guidance or information sharing

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Data Safety Monitoring Boards

What they are/what they do Unique elements of PCORI-funded research that pertain to DSMBs What we are learning from our portfolio Ideas for providing guidance or information sharing

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Privacy and Confidentiality

What these concepts mean Elements of PCORI-funded research that create unique privacy questions Ideas for providing guidance and information sharing

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Call for Topics

Patient Engagement Advisory Panel, January 14, 2015

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Wrap-Up & Adjourn

Sue Sheridan, MIM, MBA, DHL Director of Patient Engagement

Patient Engagement Advisory Panel, January 14, 2015

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Program Timeline

Task Timeline

Welcome Inaugural Ambassadors – Patient Engagement Advisory Panel Saturday, September 21, 2013 Invite workshop attendees, advisory panelist, merit reviewers, and PCORI funded project partners to join the PCORI Ambassador Program September 24- October 1, 2013 Development and release of PCOR Science Training November 2013 Conduct six-month program evaluation Spring 2014 First annual meeting Spring 2014 Release of additional PCOR Science Training Summer 2014 Conduct one-year program evaluation Fall 2014

Thank you!

Lunch in Crystal Ballroom Salon A.

Safe travels home.

Patient Engagement Advisory Panel, January 14, 2015