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625 Living well with and beyond cancer: a digital exploration of patient experience and expertise in Ireland
  1. F Donohoe,
  2. Y O’meara,
  3. A Roberts,
  4. L Comerford and
  5. D Brennan
  1. Living Well Cancer Programme, UCD Gynaecological Oncology Group, Dublin 7, Ireland


Introduction/Background*The Living Well Cancer Programme is an Irish Cancer Society funded pilot programme aimed at developing a survivorship service for women survivors of cancer.

A key element of this programme is public and patient involvement (PPI) in our efforts. With this in mind, we established a digital advisory board through a company called medCrowd to ascertain the opinions and experiences of our patients to guide development of this pilot service.

Methodology 16 patient representatives were selected from those attending the follow-up and surveillance programme at both clinical sites in Dublin. Participants were selected based on cancer site and treatment modalities experienced. Participants were given access to a secure site on the medCrowd platform, and 5 questions were posed to them over the course of 6 weeks in early 2021. The 5 questions focused on (1)what a survivorship service should offer, (2)what resources would participants recommend, (3)what advice would participants give to a newly diagnosed person, (4)what would a successful service look like and (5)what were the participants views on virtual follow up post COVID-19. Responses were text-based.

Result(s)*Of the 16 participants selected, 14 engaged in the process. The overall response rate for all questions was 71% with 94 individual messages sent over the conversations.

Participants identified that patient needs for survivorship depend on disease site, stage and treatment modalities and do change over time. Nevertheless, they identified areas such as sexual dysfunction, fertility, peer support groups, career and financial advice as essential for any survivorship service to address. All participants spoke of the need for a designated contact person on their medical team whom they can contact with ‘minor’ queries. The need for psychological support both formal and informal was also highlighted. Participants also spoke about their own unmet needs and a need to increase supports around the issues of menopause, exercise, nutrition and fatigue management.

Participants also felt there were aspects of a survivorship service which could be offered virtually, however, all would prefer some face-to-face contact with their treating team.

Conclusion*The information provided through this digital advisory board will now inform the work of the Living Well Cancer Programme.

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