Online Patient Led Peer Support Communities - NHS
Sambeckett's has been working in partnership with various NHS Trusts for many years now and has achieved full information governance compliance for the websites produced. We are one of few companies in the UK that has achieved this status.
Sambecketts works with various Trusts in the South West to provide secure online platforms for patients for peer support and up-to-date health information.
Project - realshare
Client: NHS SW
www.realshare.co.uk officially launched on the 8th September at the Bath University School of Management. Presentations were given by the research team from Bath University, Deirdre Brunton, Teenage Cancer Trust funded Lead Nurse Bristol UH, Dr Adam Dangoor, Oncologist Bristol UH. Guests included 10 young people who are using realshare.
ITV SW news featured the patient perspective on using realshare and can be viewed here
Sambecketts was approached by NHS Cancer Services in the South West, based at Bristol University Hospital – the Principal cancer treatment hospital in the South West.
NHS SW had the idea of creating a brand and working with a cohort of young cancer patients to develop an online community for TYA’s (teenagers and young adults with cancer) in the South West. An interactive website (similar to Facebook in terms of being user generated and socially interactive), which would provide the following:
Offer support in terms of providing information about local support services and events in the South West region
Direct information about the health care professionals in their area, who they are and what to expect from each one of them.
An online space where teenagers and young adults with cancer could be with one another to share the experience hence reducing the sense of isolation that so many feel.
Information about local employment, education and training opportunities in line with The National Cancer Survivorship Initiative Children & Young People – Department of Health
The needs of young people with cancer were highlighted recently in the report ‘More than my Illness – Delivering quality care for young people with cancer’ delivered by CLIC Sargent:
“Young people need good information and support to help them make positive and informed choices about their life and about their care.
This is particularly important when spending time at home during and after treatment. Young people must have good information on how to manage their illness and what to do in an emergency, to ensure that spending time at home is safe. Knowing what to expect and who to contact also reduces the sense of isolation many young people and their families feel on discharge from hospital.
The young people and their significant others that participated in the More Than My Illness discussion groups felt that information was often lacking. Once back at home they felt ill informed, confused, disempowered and isolated. They also felt that information was often given too early or too late.”
Our services for the NHS realshare project:
TYA (Teenager and young adult with cancer) Leaflet - double page spread example
The realshare website officially launched as a pilot in Spring 2012. It has now been re-developed in line with the user experience.
An evaluation study was undertaken with a focus group of teenagers and young adults with cancer, who used the site for a period of 5 months, overseen by researchers from Bath University and the team from Bristol UH.
The final report summarises the key findings of the study on the use of the online platform, which was designed to form an online community specifically for teenagers and young adults with cancer in the South West region in England. It builds upon a preliminary study on the development of an online TYA mutli professional virtual platform led by Deirdre Brunton and her team in 2009 and project published Daniels (2011).
The study was driven by an understanding that teenagers and young adults (TYA) with cancer often fall between paediatric and adult cancer care, but neither can fully address the needs of the TYA patient. Based on this, the study aimed to evaluate the use of realshare for TYA with cancer.
For a period of five months, a group of TYA with cancer posted messages in the realshare forum. Pre and post intervention focus groups were conducted. Responses were analysed using thematic analysis. You can download the final report here.
The website is currently in development using the key findings from the evaluation report to guide and inform.
You can view the site by clicking on the image below - however some parts of the site are restricted in terms of access for patient confidentiality and the site is currently being re-developed in line with the user experience and feedback from the registered users.
Happy to chat... find us on skype 'hellosambecketts'
Happy to listen... call us +44 (0) 1258 839118
Please feel free to email us with any thoughts or questions -
we are open, friendly and ready.