Lessons Learned and Pathways Forward: Practical Experiences in Patient Engagement

View the portfolio of abstracts. This portfolio provides a collection of case examples of patient engagement in research and care delivery. The cases highlight emerging good practices, include successful methods used, and identify shortcomings and gaps that need to be filled. The case studies included here were submitted to the National Health Council in response to a call for case examples that was announced in the summer of 2017 by the NHC Chief Medical/Scientific Officers (CM/SO) Conference Planning Committee. Four of the case examples in the portfolio were selected for podium presentations at the 2017 National Health Council CM/SO Conference on September 18, 2017.
Presentations from the 2017 conference are available for download below.
From talking about patients, to communicating with patients: Lessons learned from The American Heart Association Slides
  • Patrick Dunn, PhD, MS, MBA, Center for Health Technology and Innovation, American Heart Association
  • Jennifer Volland, AHA ConnectedHeart Health participant
Moderated Panel Discussion: Patient engagement in drug co-development part 1: Efforts to obtain the voice of the patient
Ensuring the impact of research investments is essential in today’s challenging environment. This session explored how different organizations develop and leverage their research portfolios to drive strategy and achieve impact.
  • Theresa Mullin, PhD, Director, Office of Strategic Programs, FDA Slides
  • Dory Kranz, Chief Executive Officer, National Alopecia Areata Foundation
  • Mike Siegel, PhD, Vice President, Research Programs, National Psoriasis Foundation
  • Moderator: Guy Eakin, PhD, Senior Vice President, Scientific Strategy, Arthritis Foundation, and Conference Co-Chair
Moderated Panel Discussion: Patient engagement in drug co-development part 2: Case studies 
  • Abbe Steel, Chief Executive Officer, HealthiVibe Slides — Abstract selection: Trial Simulation Workshops to Gather Input from Phase II Investigators, Sites, and Patient in the Netherlands, Spain, and the United States, Janssen, HealthiVibe.
  • Karlin Schroeder, Director, Community Engagement, Parkinson’s Slides —  Abstract selection: Patients Improving Clinical Trials: Partnership Between Pfizer and Parkinson’s Foundation, Parkinson’s Disease Foundation and Pfizer – Karlin Schroeder, Director, Community Engagement, Parkinson’s Foundation
  • Moderator: Guy Eakin, PhD, Senior Vice President, Scientific Strategy, Arthritis Foundation, and Conference Co-Chair
Patient engagement in quality of care measurement
  • Eugene Nelson, DSc, MPH, Director, Population Health and Measurement Program, The Dartmouth Institute Slides
  • Reena Duseja, MD, Director, Division of Quality Measurement, Quality Measurement and Value-Based Incentive Group, Center for Clinical Standards and Quality, Centers for Medicare and Medicaid Services Slides
  • Moderator: Kate Knobil, MD, Chief Medical Officer, Pharmaceuticals, GSK, and Conference Co-Chair
Hand and Glove: Leveraging Consumerism Experiences to Improve Patient Engagement
  • Hal Paz, MD, Executive Vice President & Chief Medical Officer, Aetna Inc.
  • Gary Loveman, PhD, Executive Vice President, Consumer Health & Services, Aetna Inc.
Patient engagement and capturing the whole patient
  • Steve Iselin, Acting Assistant Secretary of the Navy for Energy, Installations, and Environment
  • Nikki Levy, Vice President, Patient Engagement, Alkermes  — Abstract selection: Multi-Step Advocacy Collaboration: How Patient Feedback Loops Inform Program Development, Alkermes
  • Moderator: Jill Harkavy-Friedman, PhD, Vice President of Research, American Foundation for Suicide Prevention
Patient engagement and public policy
  • Susan Sheridan, DHL, MIM, MBA, Patient and Family Engagement Advisor in the Quality Improvement and Innovation Group, Center for Clinical Standards and Quality, Center for Medicare and Medicaid Services
  • Anna Hyde, Vice President, Advocacy and Access, Arthritis Foundation
  • Bari Talente, JD, Vice President, MS Coalition and Executive Vice President, Advocacy, National Multiple Sclerosis Society Slides —  Abstract selection: Engagement of Advocacy Organizations in an ICER Analysis: the MS Coalition Experience, National Multiple Sclerosis Society, Institute for Clinical and Economic Review, MS Coalition, and Accelerated Cure
  • Moderator: Lisa Simpson, President and Chief Executive Officer, AcademyHealth
Platinum Premier: Merck
Premier: Alkermes
Leading: Aetna
Supporting: Bristol-Myers Squibb

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