Patient Engagement Initiatives

As the result of an educational grant from Teva Pharmaceuticals we are pleased to present a number of sessions and opportunities for Congress attendees to engage with patient advocates.

Innovation Lab Presentations

Thursday, September 13, 2018

9:30 – 10:30 a.m.

Location: Innovation Lab

Global Year on Pain Education — Book Presentation of Qualitative Resource
A presentation of the 2018 Global Year eBook, “Including Qualitative Research in Pain Education.” Authors will discuss how to use the resource, along with activities that can be used in pain education to stimulate thinking about what it is like to live with pain.

Patient Voices
Joletta Belton, Co-Founder & Executive Director of the Endless Possibilities Initiative and Pete Moore, Author and Founder of The Pain Toolkit share their stories and perspectives on living with pain.

Workshops

Thursday, September 13, 2018

The Global State of Pain Management

10:45 – 12:45 p.m.

Location: Room 052B

Discover the perspective of and lessons learned from patient organizations around the world.  Organized and moderated by Penney Cowan, Founder& COE American Chronic Pain Association and Chair, International Alliance of Patient Organizations.  She is joined by two Board Members of the International Alliance of Patients Organizations and International Pain Management Network:  Hussain Jafri from Pakistan and Jolanta Bilinska from Poland.

Is Pain Self-Management Your First Choice or Last Resort?

3:15 – 6:00 p.m.

Location: 052B

What is pain self-management and how it can support the patient? How to activate patients to self-manage and promote self-management to them in time-based consultations How to promote, action planning, problem solving, dealing with setbacks and self-monitoring This Pain Toolkit workshop is ideal for all healthcare professionals who work in Community, Primary, Secondary and Social Care. It can help to increase their awareness of the benefits of pain self- management.

Presented by Pete Moore, Author and Founder of The Pain Toolkit.

Friday, September 14, 2018

The Patient Voice, Self-Management and Resiliency; The Patient Perspective

10:30 – 12:30 p.m.

Location: 052B

A conversation for health care providers and people living with chronic pain from the patient perspective about the importance of validating patient experiences and integrating the patient narrative as part of their effective health care and treatment. A discussion on the need for patients to be active participants in their care through proper self-management and understanding resiliency and why it is important. Presented by Keith Meldrum, patient advocate and former chair of the Governance and Nominating Committee of the Pain BC Society, Canadian chronic pain patient advocacy and education group

Effective Advocacy at the Local and National Levels: Learning from the Experts

12:30 – 2:30 p.m.

Location: 052B

The scope of translational pain research is often limited to clinical application of a therapy.  In the real world, however, access to pain assessment and effective treatment is blocked by social, economic or administrative barriers. Overcoming such barriers is key to improved prevention and care of pain, but the knowledge base and skill sets needed to achieve support for pain care require an alternative view of pain education from its present biomedical focus.

This panel expands the breadth of pain-related education by five accomplished leaders whose efforts have spanned public health, military and veterans’ health care, mass media, and pediatric and other family- and patient-led groups convening in person or virtually.  These experts will speak briefly about the projects and challenges they have faced and still face, and share the strategies they employed to achieve positive change in various levels of health care up to and including the national level.

Program:

Welcome and introduction of panelists
Daniel B. Carr, MD, AM, FFPMANZCA (Hon.)
Professor and Founding Director, Tufts Public Health Program on Pain Research, Education and Policy
Tufts University School of Medicine
Boston, Massachusetts, USA

A nation in pain: what everybody needs to know
Judy Foreman
Syndicated Health Journalist and Author, Senior Fellow, Schuster Institute for Investigative Journalism – Brandeis and former pain sufferer
Cambridge, Massachusetts, USA

The Massachusetts Response to the Opioid Epidemic through a Public Health Lens
Monica Bharel, MD, MPH
Commissioner of the Massachusetts Department of Public Health
Boston, Massachusetts, USA

Partnering with patients and families to improve pain management in children
Christine Chambers, PhD, RPsych
Canada Research Chair (Tier 1) in Children’s Pain and Killam Professor in the Departments of Pediatrics and Psychology & Neuroscience, Centre for Pediatric Pain Research
Dalhousie University
Halifax, Nova Scotia, Canada

Collaborative pain care: the stepped care model for pain management in the Veterans Health Administration
Friedhelm Sandbrink, MD
Acting National Program Director for Pain Management, Specialty Care Services, Veterans Health Administration, Washington, DC
Director, Pain Management Program, Dept Neurology, Washington VA Medical Center
Clinical Associate Professor in Neurology, Uniformed Services University, Bethesda, Maryland, USA

Communicating the Experience of Pain in the Digital Age
Pamela Katz Ressler, MS-PREP, RN, HNB-BC
Adjunct Lecturer of Public Health and Community Medicine, Tufts University School of Medicine Award-winning blogger, founder of Stress Resources, Inc. and researcher on the intersection of social media, online patient communities and healthcare
Tufts University School of Medicine
Boston, Massachusetts, USA

Saturday, September 15, 2018

The Patient Perspective: Pain Science and Patient Empowerment

9:30 AM – 12:30 p.m.

Location: 052B

Speaker:

Joletta Belton, Co-Founder and Executive Director of the Endless Possibilities Initiative shares the power of pain science in empowering people living with pain to live well through the lens of personal story.

Advocating for Pain Relief Worldwide: Best Practices from Around the Globe

12:30 – 2:00 p.m.

Location: 203AB

This session provides an overview of IASP Advocacy efforts with the WHO (World Health Organization).  Speakers will provide a summary and current status of the ICD-11 initiative with WHO and around the world.  Perspectives from the Association of South-East Asian Pain Societies (ASEAPS) providing a recap of regional work, best practices in chapter engagement and a highlight of the Pain Clinic Toolkit will be provided. US National Pain Strategy and the American Pain Society will summarize some of their work and showcase collaborative efforts.

A patient represent will discuss need for multi stakeholder partnerships.  The latter part of the session presents the Societal Impact of Pain, a successful European collaborative initiative and discuss applicability to other regions.

Speakers:

Rolf-Detlef Treede, Dr. Med., Immediate Past President, International Association for the Study of Pain, Chair, IASP ICD-11 Task Force, IASP Liaison to the WHO

Mary Cardosa, MBBS, IASP Councilor, ASEAPS Representative, Chair, Pain Clinical Tool Kit Organizing Group

William Maixner, D.D.S, Ph.D, President, American Pain Society, Member, Interagency Pain Research Coordinating Committee (IPRCC), National Institutes of Health

Penney Cowan, Executive Director, American Chronic Pain Association

Thomas Tolle, chair of European Pain Federation advocacy committee and member at large of European Pain Federation Executive Board

Bart Morlion, President of the European Pain Federation

Marian Harkin, Member of the European Parliament, Alliance of Liberals and Democrats for Europe

Paul Cameron, Scottish Government and NHS Scotland

In order to support the initiative further, IASP has sponsored a relaxation lounge to facilitate viewing of patient videos. Videos supported by a patient advocacy grant from Teva Pharmaceuticals.