1. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Overview of Public Forums in Raising Continence Awareness for the Middle East Diane K. Newman, RNC, MSN, CRNP, FAAN Co-director, Penn Center for Continence and Pelvic Health Division of Urology Instructor, School of Medicine University of Pennsylvania Philadelphia, Pennsylvania, USA

2. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Diane K. Newman Chairperson Continence Promotion Committee (CPC)

3. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Urinary Incontinence A Hidden Condition Nearly two thirds of patients are symptomatic for 2 years before seeking treatmentNearly two thirds of patients are symptomatic for 2 years before seeking treatment Many self-manage by voiding frequently, reducing fluid intake, and wearing absorbent productsMany self-manage by voiding frequently, reducing fluid intake, and wearing absorbent products Perceived as low priority by some primary care providersPerceived as low priority by some primary care providers  50% question patients about UI/Overactive bladder  50% question patients about UI/Overactive bladder Only 40% of patients who do ask for help get treatment suggestionsOnly 40% of patients who do ask for help get treatment suggestions Result: UI is under-reported and under-treatedResult: UI is under-reported and under-treated (Ricci, et.al., 2003)

4. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Screening for Incontinence Terminology Understood Understood – Bladder Health – Bladder Control – Leakage – Wetting – Poor Bowel or Bladder Control – Overactive Bladder Not understood Incontinence Incontinence Continence Continence Detrusor overactivity Detrusor overactivity Anal incontinence Sphincter incompetence What are they? Symptoms, syndromes, diseases?

5. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Factors Influencing Access to Continence Services BARRIERSOPPORTUNITIES Not Seeking Help Accessing Community Continence Services Independent Management of Incontinence Reactions of Incontinence Beliefs About Causes of Incontinence Attitudes to Aging and Health Media Influences Contact with Primary Care (Horrocks, et al 2004)

6. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Strategies to Raise Continence Awareness throughout the World

7. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Principal aims:Principal aims: –Identify opportunities for networking across various countries –Increase awareness amongst ICS members of continence related issues –Facilitate development of continence organisations –Facilitate interchange of information about continence awareness and promotion –Identify opportunities for continence prevention strategies. International Continence Society (ICS) Continence Promotion Committee (CPC)

8. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt National Organizations - 2008 42 Organizations in 33 Countries  AUSTRALIA  BRAZIL  COLOMBIA  FRANCE  INDIA  ITALY (2)  MALAYSIA  NEW ZEALAND  POLAND  SWEDEN  THAILAND  AUSTRIA  CANADA  CZECH REPUBLIC  HUNGARY  INDONESIA  JAPAN  MEXICO  NORWAY  SINGAPORE  SWITZERLAND  UK (3)  BELGIUM  CHINA (Hong Kong)  DENMARK  GERMANY  ISRAEL  KOREA  NETHERLANDS (4)  PHILIPPINES  SPAIN  TAIWAN  USA (4)

9. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Continence Promotion Committee of the ICS 22 global initiatives: – –Public Forum To be held in conjunction with the annual ICS meeting – –Worldwide Continence Day

10. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Strategy to Raise Continence Awareness throughout the World

11. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt What is a Public Forum? A “public meeting place for open discussion” Dates back to the Romans – –Used the public square or marketplace as an assembly place for judicial activity Now a medium for open discussion or voicing of ideas Usually involves a public meeting – –Presentation or a discussion among experts and often including audience participation.

12. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Objectives – –Provide the general public with information about urinary incontinence. – “ICS/CPC Public Forum” –Provide newly formed organizations with a “ICS/CPC Public Forum” model for use in their individual country Assist national organizations with patient advocacy programs – –Foster collaboration among National Organizations – –Increase the ICS’s profile with the public

13. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum OOpportunity for the CPC and the ICS to raise awareness and discuss subjects relevant to the area of Continence Awareness

14. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum MissionMission Blueprint – standardization of the Public Forum model for use by CPCsBlueprint – standardization of the Public Forum model for use by CPCs Promote interaction between ICS organization and public to raise Public (end-user) AwarenessPromote interaction between ICS organization and public to raise Public (end-user) Awareness BladderBladder Bowel ??Bowel ??

15. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt CPC Public Forum PurposePurpose “Raise Continence Awareness”“Raise Continence Awareness” Empower people to take control of their bladderEmpower people to take control of their bladder Drive pts to providersDrive pts to providers Involve ptsInvolve pts Learn about pts concerns - “stories”Learn about pts concerns - “stories” Link ICS professional mtg with countryLink ICS professional mtg with country Increase ICS professionals interaction/involvement with public/ptIncrease ICS professionals interaction/involvement with public/pt

16. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Target Audience Consumers/publicConsumers/public –Patients –Professionals –Carers (caregivers) –Public officials –Providers (doctors, nurses, physios) 2007 CPC Rotterdam Public Forum

17. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Building the Agenda USA-National Association For Continence LUT and Pelvic FloorLUT and Pelvic Floor The Female vs. Male BladderThe Female vs. Male Bladder My Story…….My Story……. Getting DiagnosedGetting Diagnosed OAB/NocturiaOAB/Nocturia Bowel HealthBowel Health Breakout Groups on SUI & FSD and Male SUI & EDBreakout Groups on SUI & FSD and Male SUI & ED

18. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Budget ExpensesExpenses –Advertisement –Hall rental –Refreshments Funding-RevenueFunding-Revenue –Charge a modest “ticket-price” to consumers –Donations –ICS stipend

19. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Forum Specifics Title - ExamplesTitle - Examples –You and your bladder –Incontinence- what to do? –Is your bladder in charge of your life –Is your bladder your boss?

20. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics Advertisement Advertisement Format Format Speakers Speakers 2007 CPC Rotterdam Public Forum

21. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics Advertisement To Whom???To Whom??? –Place on ICS & CPC website, local organ. website, mtg website –Flyer emailed to organizations –Local Advertising in radio, newspapers –Flyer/brochure/poster to: OrganizationsOrganizations Pharmacists/GPs/Gyns/MidwivesPharmacists/GPs/Gyns/Midwives Women’s groups/senior/residential centersWomen’s groups/senior/residential centers Industry contactsIndustry contacts Hospitals – Wellness programs??Hospitals – Wellness programs??

22. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt 2007 Rotterdam Public Forum Brochure Native Language

23. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Announcements Announcements –Newspaper Local/daily paperLocal/daily paper Senior papers/journalsSenior papers/journals Ladies magazinesLadies magazines Health/sports newspapers/sectionsHealth/sports newspapers/sections Radio AnnouncementRadio Announcement

24. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt ICS Announces Public Forum @ press eventsICS Announces Public Forum @ press events Flyer in “press map” announcing forumFlyer in “press map” announcing forum Article developed (press release)-distribution to the pressArticle developed (press release)-distribution to the press Public Forum Specifics Press Conferences

25. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics FormatFormat –Moderator Volunteer -Local Official WelcomeVolunteer -Local Official Welcome Public - Local medical TV womanPublic - Local medical TV woman –Program –Date, Day of Week, Length

26. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Speakers Urologist/gynecologist SpeakersUrologist/gynecologist Speakers –Experience with consumer audiences –Warm and energetic personality –Credentials that can be understood and appreciated –Diversity of skill sets (and perspectives) 2007 CPC Rotterdam Public Forum

27. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics Continence nurseContinence nurse –Conservative/lifestyle changes –Management of urine

28. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics Patient presenterPatient presenter –Personal story

29. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Extras Extras –Refreshments Beverages & cookiesBeverages & cookies –Door prizes Can they be awardedCan they be awarded Give awaysGive aways 2007 CPC Rotterdam Public Forum Public Forum Specifics

30. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt Public Forum Specifics Provide for exhibits and plenty of interactionProvide for exhibits and plenty of interaction –Product Display Local industryLocal industry Product ManufacturersProduct Manufacturers Local OrganizationsLocal Organizations 2007 CPC Rotterdam Public Forum Industry Table Tops

31. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt

32. 2008 Cairo Public Forum Friday, October 24 th

33. Continence Promotion Committee Workshop, International Continence Society – Cairo Egypt

35. Diane K. Newman Chairperson Continence Promotion Committee (CPC) THANK YOU