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.

Submit My Letter to Pain

My Letter to Pain Campaign

The Global Alliance of Partners for Pain Advocacy (GAPPA) invites those living with pain and the family and friends of those living with pain to participate in the My Letter to Pain campaign. This campaign, supported by Novartis, aims to highlight and increase understanding of the different experiences of pain, told from the lived experience of pain perspective, through an online survey and story submission.

Those living with pain often report a disconnect while explaining their experience to physicians; this campaign will assist physicians in utilizing their patients’ words to understand their pain, how it impacts their lives, and how they respond to treatment. GAPPA hopes the campaign and stories will:

Create educational information to help those living with pain.
Provide individuals the opportunity to tell their stories and express their feelings freely and openly.
Lead to greater communication between individuals and groups across the pain community.
Identify directions for future programming and communication efforts.

Each submission remains anonymous unless the submitter chooses to share their details or present.
This campaign aims to bridge the gap between the lived experience of pain and pain research by inviting those with the lived experience to answer a two-part questionnaire.

To Participate:

Submit a demographic survey

Submit an optional lived experience story from either personal experience or family/caregiving experience. Stories may include:

- Pain management experiences
- Self-management levels
- Successes and failures in treatment
- Resources required

- Cultural and geographical background
- Social support

GAPPA will review the letters to look for common themes that can help identify major barriers and factors that can help identify future education gaps and necessary programming. Survey answers will help determine some clear factors affecting those with the lived experience of pain and how they view what is missing in terms of care.

A selection of stories will be chosen to appear on the GAPPA website and social media. Any story published will be anonymous unless you choose otherwise. 

Participating in the My Letter to Pain campaign will assist in furthering pain research to help advance and create better outcomes, leading to greater communication between individuals and groups across the pain community and generate educational information to help those with the lived experience of pain. If you know someone that might be interested in participating in the My Letter to Pain, please feel free to forward the campaign to them.

Novartis has not requested and will not receive any submitters' personal information. support is provided for this GAPPA project to help GAPPA further identify barriers to care.

If you have any questions, please email gappa@iasp-pain.org

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.