SOUTENIR L'ACTIVITÉ PHYSIQUE EN RÉADAPTATION AU CANCER : CO-CONCEPTION D'UN SITE WEB D'INFORMATION PATIENT

L. Brennan1, P. Browne2, R. Menzies2, E. Guinan1
1Trinity College Dublin, Discipline de Chirurgie, Dublin, Irlande, 2Trinity St James's Cancer Institute, Patient Representative Group, Dublin, Ireland

Contexte: There is a growing global population of cancer survivors, and strong evidence that being physical active is beneficial for physical and psychosocial wellbeing in this population. Unfortunately, there are significant barriers to physical activity, such as lack of information or poor access to services. It is clear that many cancer survivors need additional support to become more physically active.

Objectif : To develop a website for people with and after cancer which provides information on physical activity and cancer, as well as a directory of local exercise or rehabilitation services. The website should be highly user-friendly, impactful and meet the population’s needs.

Méthodologie: We used a co-design approach to develop this website, where patient representatives were involved as core members of the development team.

  • Co-design phase one: We held individual consultations and a Co-Design Workshop with patient representatives and members of the oncology multi-disciplinary team to gather detailed information on user needs and preferences. We then developed a prototype website architecture and sample content.
  • Co-design phase two: In a second Co-Design Workshop, we gathered feedback on the prototype layout and sample content. We then developed a draft website in collaboration with a web design company. After a national consultation of cancer rehabilitation services, we developed a searchable services directory.
  • Co-design phase three/evaluation: Through individual consultations with patient representatives, we evaluated the website and made recommended changes prior to website launch.

Résultats: Co-design workshops were attended by wide range of stakeholders: patient representative n = 8, oncology MDT n = 7, cancer survivorship researchers n = 2, web developer n = 1.
Patient needs were identified as:
  • Need for reliable, specific and accessible information
  • Details of local exercise services and examples of exercise programmes
  • Engaging and user-friendly webpage
  • Highly visual website, with lots of videos and images, and links to reliable external sources
At the evaluation stage, patient feedback about the concept, design, features and information quality was positive. Constructive feedback was provided about layout, use of language and information architecture. The website www.cancerrehabilitation.ie was launched in October 2022. We conducted local dissemination activities with patient representatives to promote the website and will monitor website usage statistics over time.

Conclusions: There is a need for an accessible, trustworthy public resource to support cancer survivors to become more active. Co-design with patient representatives was essential to the development of a user-friendly, meaningful and impactful website. Future work will involve growth of the website by adding more content, international collaborations and growth of the services directory.

Implications This is the first website of its kind in Ireland which supports cancer survivors to find physical activity information and services. The co-design methodology is an effective model for developing patient-facing resources which physiotherapists can learn to apply for similar projects.

Remerciements de financement : This project was funded by the Irish Cancer Society through the COVID-Cancer Rapid Response Award 2021.

Mots clés:
Réhabilitation du cancer
Site Web
Co-conception

Sujets:
Oncologie, VIH et soins palliatifs
Promotion de la santé et bien-être / vieillissement en bonne santé / activité physique
Technologie innovante: gestion de l'information, big data et intelligence artificielle

Ce travail a-t-il nécessité une approbation éthique? Non
Reason: Ethics approval was not required for this project as it did not involve any research participants, medical records, personal data, biological samples. Patient representatives were involved as collaborators and were financially compensated in this role. Please see attached email from research ethics committee confirming this.

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