Global Alliance of Partners for Pain Advocacy (GAPPA) - International Association for the Study of Pain (IASP)

Global Alliance of Partners for Pain Advocacy (GAPPA) is creating partnerships between people with lived experience of pain, patient advocates, researchers, and clinicians around the world, to advance the study, understanding, and treatment of pain.

Mission and Vision

Together we help those living with pain not just live but live well.

GAPPA’s vision is to work together to improve the lives of people affected by pain through effective and equitable integration of the lived pain experience into all aspects of pain research, management, education, and advocacy, across the world, for all people.

Its mission is to bring together patient advocates, patient organizations, scientists, clinicians, healthcare providers, and policymakers to create better outcomes in the awareness, understanding, research, teaching, assessment, and management of pain throughout the world.

PATIENTS AS PARTNERS in Research

GAPPA’s expertise makes them exceptional collaborators on many research projects that align with their values and aims. One of GAPPA’s main goals is facilitating connections between researchers and those living with pain.

GAPPA has already established meaningful partnerships with researchers in the United States, Canada, and New Zealand focused on patient-centered outcomes in everything from opioid tapering through storytelling to exploring the crossroads between sociology and chronic pain. If you are interested in collaborating with GAPPA on a research project, please contact us.

Patients as Partners in Research

The Amsterdam Principles

GAPPA’s Amsterdam Principles, the result of many meetings, discussions, and email exchanges, guide the organization forward and include overarching, governance, leadership, membership, and voting principles.

The following principles have been agreed by the GAPPA Task Force, and are proposed to IASP Council towards the establishment of GAPPA as a foundation related to IASP.

Together, they are termed “The Amsterdam Principles”.

Vision and Mission

Vision

Working together to improve the lives of people affected by pain through effective and equitable integration of the lived pain experience into all aspects of pain research, management, education, and advocacy, across the world, for all people.

Mission

Bringing together patient advocates, patient organizations, scientists, clinicians, healthcare providers, and policymakers to create better outcomes in the awareness, understanding, research, teaching, assessment, and management of pain throughout the world.

Overarching Principles

In December 2019, the following ideas were discussed and agreed. These ideas were used as the foundation for subsequent discussions.

GAPPA is an organization populated by “patient advocates living with pain” and “traditional IASP members.” GAPPA also recognizes that the distinction between these two subgroups is artificial, and seeks to bridge the artificial divide between them, with a view to closing it. The views and contributions of all members will be treated with equal consideration.

GAPPA is not an advocacy organization representing individual “patients” but an organization that supports advocacy, partnership, co-creation and integration of the lived experience into all areas of pain research, management and education.

GAPPA will be established as an independent organization with a relationship to IASP. This will allow GAPPA to have its own governance structure and to apply for funding opportunities not available to IASP, while maintaining the connection to IASP that is essential for GAPPA’s agreed mission. This is also in accordance with the initial charge of the Task Force approved by the IASP Council in April 2019.

Governance Principles

Based on the principles established at the Amsterdam meeting, in September 2020, a governance structure document was proposed, and a motion carried to accept this document. This was built on previous Task Force discussions as well as legal advice. This document encompassed the following elements:

Board of Directors Composition (including term lengths and limits)
Founding Members
IASP Council Relationship
Membership
Membership Pricing
Diversity

This document will be available online at a future date, along with separate documents on governance and membership, pending Council approval. These principles will serve as the basis for the bylaws and future governance developments.

Leadership Principles

In December 2019, the following leadership model was discussed and agreed:

The leadership will be equal between patient advocates living with pain and traditional IASP members and must be as diverse as possible with global representation. The GAPPA Council, structured similarly to the IASP Council, will have co-chairs (a traditional IASP member and a patient advocate living with pain).

Subsequent agreements (September 2020 and October 2020) established the following:

There should be a staggering of terms to allow for leadership training and consistency. There will also be co-vice chairs, again with equal representation from patient advocates living with pain and traditional IASP members.

Membership Principles

Membership of GAPPA will be open to individuals, including advocates, people living with pain, and traditional IASP members, and pain advocacy organizations.

In October 2020, the following membership categories were developed and agreed, based on the above principles.

Organizational
- Patient Advocacy Organizations
- Affiliated Organizations
Individual
- Advocates (includes advocates living with pain, caregivers and family members, and others advocating on behalf of those living with pain)
- Associate Members (includes people interested in GAPPA’s work but do not qualify for the advocates category such as people living with pain who are not yet advocates)
- IASP Members

Voting

CONFERENCE AND LIVING WITH PAIN RESOURCES

UPLiFT Conference

GAPPA's UPLiFT Conference will connect people across disciplines and pain conditions to further the equitable integration of the lived experience of pain into all aspects of pain research, education, advocacy, and treatment.