Press Release: A commitment to collaboration in continence care between international scientific societies and patient organizations

Commitment to Collaboration in Continence Care was a day-long workshop held in Madrid on 25th November 2022. The meeting objective was to agree the structure and scope for collaborative working between international scientific societies (as represented by ICS, EAU and SINUG), and patient organizations (as represented by WFIPP).

The meeting’s participants determined three initial areas for collaboration: 1) Education of multiple stakeholders including patients and caregivers, doctors and allied health workers, policy makers and funding organizations; 2) Improved access to trusted information; and 3) Organizational commitment to patient-centered care.

PRESS RELEASE 1 DECEMBER 2022, MADRID

A COMMITMENT TO COLLABORATION IN CONTINENCE CARE BETWEEN INTERNATONAL SCIENTIFIC SOCIETIES AND PATIENT ORGANIZATIONS

For the first time in continence care, international scientific societies and patient organizations have come together as equal partners to commit to a formal collaboration that addresses the needs of patients. On 25 November 2022, a workshop was held between leaders from the World Federation of Incontinence and Pelvic Problems (WFIPP), Sociedad Iberoamericana de Neurourología y Uroginecología (SINUG), the International Continence Society (ICS), and European Association of Urology (EAU) Patient Office to agree the content and scope of a Commitment to Collaboration in Continence Care (4Cs). These 4Cs have been defined with institutional support from Medtronic.

Urinary and/or fecal incontinence affects between 10% and 40% of adults,i,ii often as a consequence of another condition or a side effect of treatment. Some of these people live with serious physical, psychosocial or economic consequences that are not fully assessed or addressed by the healthcare system. A patient-centred, integrated care approach to treatment is widely considered to be best practice, but it does not represent the current reality for many people living with incontinence.

SINUG, ICS, EAU and WFIPP believe that meaningful collaboration between scientific societies, patient organizations, and industry, is the best way to address the needs of patients, and to effect positive structural changes within the healthcare system.

This group agreed three initial areas for collaboration:

  1. Educating multiple stakeholders including patients and caregivers, doctors and allied health workers, policy makers and funding organizations on the importance of shared decision-making, patient-centred care and communication skills
  2. Improving access to trusted information about continence issues for the general public, patients and healthcare workers
  3. Embedding the principles of joint working within our organizations, with the ultimate aim of influencing public and private healthcare structures to become more patient-centred

By committing to incorporate patients’ perspectives and priorities into training programmes, information provision, and organizational structures, this group has developed a model for joint working that can be adopted by other scientific societies and patient organizations internationally. COMMITMENT TO COLLABORATION IN CONTINENCE CARE 25 NOVEMBER 2022

i Buckley BS, Lapitan MC. Prevalence of urinary and faecal incontinence and nocturnal enuresis and attitudes to treatment and help-seeking amongst a community-based representative sample of adults in the United Kingdom. Int J Clin Pract. 2009;63(4):568-573.

ii Cooper J, Annappa M, Quigley A, Dracocardos D, Bondili A, Mallen C. Prevalence of female urinary incontinence and its impact on quality of life in a cluster population in the United Kingdom (UK): a community survey. Prim Health Care Res Dev. 2015;16(4):377-382