OvaCare Strategy Update 2019-2023 Achievements and Future Plans
Delighted to report majority goals met in first Strategy. Includes governance policies, website enhancement, board optimization, community support, and upcoming 2024-2027 strategy focusing on elevating awareness, accelerating diagnosis, and educating on ovarian cancer in Ireland aligned with Global Ovarian Cancer Charter.
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OvaCare Strategy Update 2019-2023 We are delighted to report that we met the majority of our goals from our first Strategy. Few examples listed below. All Governance Policy and Procedures to be in place by September 2019 Complete Review of the format of the Annual Report and the website to ensure that they meet transparent reporting standards by 2020 Complete Optimize Board membership by end 2019 Complete Now have all Board roles filled (including Treasurer, Marketing and Governance) Review our website to ensure that it is accessible for users Complete brought in 3rd party vendor to support. Running monthly / bimonthly Coffee & Chat sessions across the country bringing together patients and their families and friends for support within the areas they live by 2019. Complete Monthly Coffee chats in place each year with a mixture of virtual and in-person events.
OvaCare Strategy 2024-2027 OvaCare s overall goal and mission is to elevate awareness, accelerate diagnosis and educate women and their families affected by ovarian cancer within Ireland. To source and share knowledge of developments in global research and best practice with the OvaCare community. To provide support and advocacy through OvaCare s dedicated support networks. Our Vision is that all women concerned about or diagnosed with ovarian cancer have immediate access to the knowledge and support that is available, which empowers them to make critical personal and family decisions in a supportive environment. Ovarian Cancer treatment in Ireland has one of the highest mortalities across 27 countries. Late diagnosis appears to be the key reason. For this reason, OvaCare is supporting the Global Ovarian Cancer Charter, developed following a survey of 1500 women worldwide, including Irish women. The first step in developing this strategy was to ask our members what they needed. We surveyed all our current community members in May 2022 to ask them what support and information they are seeking and thus based OvaCare s goals on that feedback.
OvaCares OvaCare s Core Goals 2024 Core Goals 2024- -2027 2027 Alignment with the Global Ovarian Cancer Charter Ovarian Cancer treatment in Ireland has one of the highest mortalities across 27 countries. Late diagnosis appears to be the key reason. For this reason, OvaCare is supporting the Global Ovarian Cancer Charter, developed following a survey of 1500 women worldwide, including Irish women. The key areas from the Charter we thought best aligned with OvaCare s goals are as follows:- 1. Rapid Diagnosis Women must have access to diagnosis without delay 2. Best possible care - Women must have access to surgery, treatments and clinical trials that optimize their chances of survival and quality of life, no matter where they live. 3. Family History - Women and doctors must have access to appropriate and timely genetic testing and counselling. 4. Information and support - Women must have access to good-quality information and support in their own language that helps them to live well with the disease.
OvaCares Goals & How we Achieve Them Supporting our members How we Achieve that: How We Achieve that: Sharing Knowledge Website Patient Stories / Signposting to relevant support (e.g Thisisgo) Cancer Trials Ireland, Irish Cancer Society and other relevant newsletters Patient Days with patient requested speakers annually Coffee mornings monthly Virtually / In person Sponsoring relevant research projects (treatment, lifestyle, and environment) Feel Good / Health sessions Peer to peer support Survivors Teaching Students Program
OvaCares Goals & How we Achieve Them Increasing Awareness of OvaCare / Ovarian Cancer How We Achieve that: Continue collaborating with other relevant charities and organisations on National and Global events, e.g World Ovarian Cancer Day, World GO Day Formed links with Thisisgo platform including OvaCare as support and sponsor on website (OvaCare community helped build ovarian cancer and BRCA genetic pages) Increase membership numbers Target increase to 400 members by end of 2023 OvaCare collateral in GP s / Care homes / Centres of Excellence / Hospital Waiting rooms / Daffodil Centres Appoint a Marketing & PR Board member creating monthly calendar of events, initiatives and communications consistency of awareness Family history / Genetic join forces with other relevant charities (e.g breast, pancreatic, prostate, uterine, bowel) GP Ezine advertise OvaCare support / Increase website search engine optimisation Form strategic links with companies Well-being, CSR, Sustainability Programmes
Image result for ovacare logo Survey 2022
OvaCare Survey 2022 OvaCare Survey 2022 Background and Methodology Background and Methodology Purpose of Survey Purpose of Survey - - to seek feedback from patients and their loved ones on the services provided by OvaCare in order to review the strategy plans for OvaCare over the next 2-5 years. Who Who respondents included members of OvaCare, patients, their families and friends and some healthcare professionals. 65% of respondents are members of OvaCare. 61% of respondents were diagnosed with ovarian cancer. 27% indicated they were either a family member or friend. 14% were healthcare professionals When When 6th April 14th May, 2022. What What 19 Questions in total were asked covering the services provided by OvaCare seeking feedback on how we can improve support over the next few years. How How electronically using a tool called Survey Anyplace a link was issued to members via mail, website, twitter, Instagram and forwarded to other cancer support groups. Survey was anonymous. Image result for ovacare logo
Some questions respondents were asked: Some questions respondents were asked: How did you first hear about OvaCare? Are you aware of the services we provide? Provide Patient Diaries 6% Social Media TV/Radio 39% None of the above 10% Friend or Family 20% Online Community 35% Other 16% Research - Supporting research 39% Hospital 16% Advocacy and awareness 41% Cancer Support Centre 4% Patient days 51% ThisisGO 2% Information on our Web Site 67% Coffee and Chat - Group Support GP/Nurse 71% 2% Have you used OvaCare for support? Have you seen our new upgraded Website? Information from our Website 43% Online Community (HealthUnlocked) 39% 24% Not Applicable 33% Yes No 76% Attended Coffee and Chat 27% Attended Patient Days 24% Registered or provided with Patient Diary 6% Image result for ovacare logo
Respondents were asked to rank our services in order of importance to Respondents were asked to rank our services in order of importance to them them 1. Research was voted the first priority for respondents. 2. The next most important service to respondents is the information provided on the Website. 3. Support - Patient Days, Online Community, Coffee and Chat. Respondents are very clear in what they want from a support group. Respondents are very clear in what they want from a support group. 1. Meet with others with the disease. 2. Having an environment with a positive mindset with focus on friendship, and availability of information on treatment options. A chance to share. 3. Getting structured information. 4. A safe place to talk. Image result for ovacare logo
Experienced lasting side effects from surgery or treatment additional support sought: Lasting side effects- which area to support Long last side effects from Chemotherapy 49% Long last side effects from PARP inhibitors or other treatments 24% Long lasting side effects from surgery 47% Not Applicable 33% Other 6% Dealing with body image after surgery, sexual & intimacy problems. Information in relation to possibility of not being able to have children after treatment. Psychological effects of full hysterectomy. IVF or surrogacy options information. Help with the emotional aftermath of diagnosis, surgery and chemo. Provide a follow up care plan for patients Image result for ovacare logo
Responding to what changes if any, were needed in the services we provide at Responding to what changes if any, were needed in the services we provide at OvaCare: OvaCare: When asked about our services and whether they want to continue them as is, increase frequency or discontinue them, the respondents were happy to continue as is with some increase in frequency, in particular patient days, availability of information, online community and research. See some additional comments below: Patient Days little more time for patients to meet with each other to chat during the day. Coffee and Chat suggestions in relation to having speakers, more accessibility in the Midlands, and a return to in person sessions. Information available on our Website - some suggestions on content and highlighting positive stories. Research - supporting research from fundraising activities and sharing updates on trials & treatments - Respondents highlighted the importance of receiving updates on trials and treatments on a frequent basis. Online Community (HealthUnlocked) - Respondents highlighted the importance of cancer care and getting help in relation to treatment side effects etc. Image result for ovacare logo
Suggestions on other services patients would like OvaCare to provide Suggestions on other services patients would like OvaCare to provide: : Online exercise and relaxation classes. Buddy system where a new patient can get support from someone who has been through treatment already. Counselling service. Dedicated sections in relation to psychosexual and menopause issues. Sharing the lived experience of an Ovarian Cancer patient to the healthcare community to raise the profile of Ovarian Cancer on the minds of our future Doctors and Nurses. Awareness in Consultant Rooms/ Gynae Clinics and ensure nurse specialists in the oncology area inform patients of the service available at OvaCare. End of life service & counselling. Advice on aftercare. A few fun events to spread a little joy and positivity. Image result for ovacare logo
Additional comments from respondents: Additional comments from respondents: Ensure that the Liaison Person in the Cancer Department has been in touch and given information to the patient and help them to get in touch with OvaCare. Special avenue for cancer patients having to attend A & E or hospital and GP Services to avoid delays and the fear of getting sick during treatment as a direct contact. Treatment Protocols to eliminate treatment cancelations due to bed capacity. Highlight successful outcomes to spread hope and positivity. Highlight post treatment issues e.g. medical induced menopause especially for younger women. Increase national awareness in all hospitals of OvaCare and the support it provides. Image result for ovacare logo
Findings and recommendations Findings and recommendations: : Increase OvaCare Membership to support more patients and loved ones affected. Awareness and accessibility more work needs to be done in terms of services i.e. PR & Marketing Strategy. Website low levels currently utilising so there is a need to promote the Website further. Survivorship spread hope and positivity. Peer to Peer. 16% heard about OvaCare via the hospital and only 2% heard from their GP/Nurse. Awareness campaign needed to encourage more information sharing within the healthcare services. Continue supports like Patient days and Coffee and Chat with a view to more in person sessions and increased frequency. Consider a support line or WhatsApp group so that patients and families have more immediate access to supports. Research is clearly a priority, communicating trials and treatments and possibly investing funds needs to Image result for ovacare logo be included in strategy plan.
Acknowledgement: Acknowledgement: Administrative costs of this survey were kindly sponsored by GSK. GSK had no input into the content of the survey and will not access data generated other than any reported information made publicly available by OvaCare. We would like to thank them sincerely for their generosity Image result for ovacare logo
