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AUGS Creates a Patient Advisory Group

August 2, 2019 01:18 PM
 
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The American Urogynecologic Society was founded to serve the needs of medical professionals serving women who suffer from pelvic floor disorders. Patients have always been at the center of AUGS' mission, but have not been directly involved in the conversation. It is not that urogynecologists don’t recognize the importance of the patient perspective, our subspecialty shifted to the use of patient-reported outcomes nearly two decades ago, while most subspecialties still don’t use them. Nevertheless, the recent push across healthcare, for patient oriented research highlights the potential benefit to engaging patients at a more fundamental level. Patient oriented research engages patients in the design and implementation of research to ensure that it is relevant to their health care needs. Similarly, as AUGS strives to be an engine for innovation, and education in FPMRS, the potential benefit of capturing the patient voice is inspiring.

AUGS initiated the Voices for PFD website in 2010 to provide our patients with a trustworthy source of information about pelvic floor disorders. It is a trusted resource for many women who have pelvic floor disorders, as well as those looking for discourse with similarly minded women. More than 4,000 people have subscribed to the discussion forum, where members confer on topics related to PFD. In addition to serving the needs of our patients, this is also a valuable resource for AUGS as an organization looking to engage the patient voice.

The Board of Directors would like to build on the tradition of our field’s focus on patients, and the existing Voices of PFD website by creating a Patient Advisory Group, where patients will generously donate their time to become patient partners for AUGS. The Patient Advisory Group will have two elements: the Voices for PFD Involvement Network and the Urogynecology Women’s Panel.

Voices for PFD Involvement Network - AUGS believes that by talking to women and finding out about their experiences we can learn from and improve how things are done in the field of urogynecology. Building on the success of the Voices for PFD, we will develop the Voices for PFD Involvement Network to engage a wider and diverse group of women who will share their views and perspectives with AUGS. This will provide a platform for women to have a voice within AUGS as well as permit a two-way communication structure. It also offers the potential to gain perspectives and insights from women about specific AUGS programs and services.

Urogynecology Women’s Panel - The Urogynecology Women’s Panel will provide a more direct link to AUGS. The panel will include six public members from across North America as well as two clinician members of AUGS and a Board Liaison. All of the panel’s members have personal experience with a pelvic floor disorder either as a patient or medical professional. The goal is for the Panel to inform the AUGS Board and committees on issues of importance to women with pelvic floor disorders. Specifically, the Panel will provide a patient’s perspective on new clinical guidance documents, patient information materials, as well as quality improvement activities. The Panel will also be the link between the Voices for PFD Involvement Network and AUGS leadership, which will broaden the patient viewpoint to inform the Panel’s work.

The Panel’s first meeting will be at the AUGS/IUGA Scientific Meeting in September, and will meet at least four times a year, either in person or virtually to provide a patient’s perspective to the various programs and services of AUGS. We are lucky to have recruited members for the Panel with a wide range of expertise in many different fields and their passion for women’s pelvic floor health will help AUGS achieve its mission. Through the Board Liaison, the Panel has a direct link to the Board, which means the Board and the AUGS Strategic Plan will guide the work of the Panel.

Urogynecology has always focused on maximizing our patients’ quality of life. Though our new Patient Advisory Group, AUGS will directly engage our patients’ perspectives in the planning and implementation of our work, helping us to maintain this focus on the needs of women with pelvic floor disorders.

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