ISPOR Patient Centered Special Interest Group
Patient Engagement in Research Working Group
Rachel Harrington
Rachel Harrington, Pre-Doctoral Fellow
Institute for Health Research and Policy / College of Pharmacy
University of Illinois at Chicago
Chicago, IL, USA
Leadership Group:

Rob Camp, Patient Advocate, EUPATI Spain and EURORDIS, Barcelona, Spain
Maya Hanna, MPH, Doctoral Student, University of Maryland School of Pharmacy, Baltimore, USA
Asha Hareendran, PhD, MA, Senior Research Scientist, Evidera, London, UK
Robert N. McBurney, PhD, Co-Principal Investigator, iConquerMS™ – The MS Patient – Powered Research Network, Chief Executive Officer, Accelerated Cure Project for MS, USA
Elisabeth Oehrlein, PhD, MS, Senior Director, Research and Programs, National Health Council,
Washington, DC, USA
Donald L. Patrick, PhD, MSPH, Director, Seattle Quality of Life Group and Biobehavioral Cancer Prevention and Training Program, University of Washington, Seattle, WA, USA
Eleanor M. Perfetto, PhD., MS, Professor, Pharmaceutical Health Services Research, School of Pharmacy, University of Maryland, Baltimore, MD, USA and Senior Vice President, Strategic Initiatives, National Health Council, Washington, D.C., USA
Amie Scott, MPH, Business Health Research Analyst, SEAS Capital Partners, Plymouth, MI, USA
Rainald von Gizycki, MD, Honorary President, Pro Retina Deutschland e.V., Coordinator, Pro Retina Europe, and Member of Board of Trustees, Pro Retina Foundation Fighting Blindness, Bad Nauheim, Germany
Russell Wheeler, Patient Advocate for Leber's Hereditany Optic Neuropathy,  Winchester, UK

Work Products:

Qualitative Content Analysis Training Webinar

Patient Engagement in Health Outcomes Research: A Snapshot from the ISPOR Community


To facilitate the involvement of patient representatives in the research process. The group will define key terms, and examine existing theoretical frameworks of patient engagement in health research and outcomes process.


Outcomes research is rapidly evolving and major changes are already being implemented. One common feature is the agreed consensus on the importance to obtain the input of patient representatives in all processes.

The Patient Engagement in Research Working Group will define key terms such as “patient engagement” as well as identify existing frameworks for involving patients and their representatives in all stages of research and decision making.

The framework analysis will include:

  • The stages at which patients should be involved
  • The level of their involvement in each stage
  • The challenges that will face the researchers and patient representatives
  • Recommendations

Defining Patient Centeredness and Engagement in HEOR: Proposed Definition and Stakeholder Response
May 21, 2018 – ISPOR 2018, Forum Presentation, Baltimore, MD, USA

What Do We Mean By Patient Engagement? A Qualitative Content Analysis of Current Definitions
May 21, 2018 – ISPOR 2018, Forum Presentation, Baltimore, MD, USA

Defining Patient Engagement in Research: A Qualitative Analysis
November 7, 2017 – 20th Annual European Congress, Open Meeting Presentation, Glasgow, Scotland

Patient Engagement, Patient Centric, What Does It All Mean?
November 1, 2016 – 19th Annual European Congress, Open Meeting Presentation, Vienna, Austria

Patient Engagement: Stopping to Define It
October 31, 2016 – 19th Annual European Congress, Forum Presentation, Vienna, Austria

Attributes Defining Patient Engagement and Centeredness in Health Care Research and Practice: A Framework Developed by the ISPOR Patient-Centered Special Interest Group
October 31, 2016 – 19th Annual European Congress, Poster Presentation, Vienna, Austria

Definitions for Patient Engagement and Centeredness in Health Care Research and Practice: A Systematic Review by the ISPOR Patient Centered Special Interest Group
May 25, 2016 – 21st International Meeting, Poster Presentation, Washington, DC, USA

Patients as Partners in Research – Making it a Reality
May 24, 2016 – 21st International Meeting, Workshop Presentation, Washington, DC, USA

Patient Engagement: What Is In A Name?
November 2015 - ISPOR 18th Annual European Congress, Forum Presentation, Milan, Italy

Patient Engagement in Health Economic and Outcomes Research: Current and Future ISPOR Initiatives
May 2015 - ISPOR 20th International Meeting, Forum Presentation, Philadelphia, PA, USA

Patient Engagement In Outcomes Research: Current Status, Questions, Beliefs, And Future Perspectives
November 2014 – 17th Annual European Congress, Workshop Presentation, Amsterdam, The Netherlands

Work product timeline:



Patient Centered SIG preliminary meeting in ISPOR 16th Annual European Congress in Dublin

November 2013

Patient Centered SIG development

January – April 2014

Patient Engagement in Research WG topic development

May – July 2014

Development of survey for use at the International Meeting in Montreal (June 2014)

June 1, 2014

Patient Centered SIG: Patient Engagement in Research WG meeting at 19th Annual ISPOR International Meeting in Montreal, Canada

June 4, 2014

Develop and refine outline

August - September 2014

Slide preparation for workshop

September – October 2014

Patient Engagement in Research WG - Workshop Meeting at ISPOR 17th Annual European Congress in Amsterdam, The Netherlands

November 12, 2014

Revision of outline based on workshop presentation

December 2014 – January 2015

Development of article for Value and Outcomes Spotlight (VOS) based on Workshop

March – September 2015

Analysis of survey results and incorporation in VOS article

April – June 2015

Presentation of survey results and update on SIG projects Forum at ISPOR 20th Annual International Meeting, Philadelphia, USA

May 18, 2015

Leadership Meeting at ISPOR 20th Annual International Meeting in Philadelphia, PA, USA

May 20, 2015

Identified need to examine and define terminology

June 2015

Developed spreadsheet for literature and web review of terms

June – August 2015

Draft VOS manuscript sent to Patient Centered SIG Review Group

September 2015

Discussion and revision of draft VOS based on comments received

October – November 2015

Web review

September – October 2015

Literature Review April – October 2016
Analysis of data November 2016 – January 2017
Slides for ISPOR presentations, Vienna October 2016
Presentations in Vienna November 2016
Draft of manuscript February – May 2017

Preparation for ISPOR presentation

April 2017

ISPOR International Meeting presentation

May 2017

First Review of draft manuscript

May 2017

Revise draft

June – July 2017

Second review of manuscript

August 2017

Revise manuscript based on review and presentation

August – September 2017

Submit to Value in Health

October 2017

Preparation for ISPOR presentation

October 2017

Presentation at ISPOR European Congress

November 2017

If you would like to submit a new proposal for a manuscript and/or a tool, please send an email to:

To join this SIG Working Group, see: Join a Special Interest Group.

Patient Centered SIG | Special Interest Groups Index


Leadership Group Members Only

How to login

User name: first part of the email address (before @)
(e.g. for it should be jdoe)

Password: ISPOR Member ID.

Click here for login help