My Letter to Pain

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.

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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.

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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.