Search

BackgroundThe meaningful involvement of people receiving palliative care (service users), carers and the wider community is essential to informing palliative care education, research, policy and practice.A group was established on the island of Ireland in 2013 for this involvement. By 2016, as this group had come to the end of its membership term, a significant project was undertaken to refresh membership.Aim(s)The aim was to renew and refresh group membership, fostering diversity of membership and ensuring that involvement remained worthwhile, and to increase the remit of the group’s involvement in health structures in both jurisdictions on the island. Consideration was also given to a range of flexible methods of involvement wider than the original concept.MethodA recruitment drive was launched by the recruiting organisation in July 2016. This was supported by a suite of information on the organisation’s website – promotional flyer, video, information leaflet, guidance for applicants and an expression of interest form. The opportunity was promoted through other networks; use of the flyer, email, social media and a press release.ResultsMore than 60 people asked to find out about the opportunity and 45 expressions of interest forms were received. A small number of applications were not progressed when involvement was clarified. An opportunity to renew membership was extended to current members. Invitations were issued to potential new members (43) and renewing members (13) to a meeting in September 2016. Terms of Reference, which were discussed at the meeting and amended, were issued to 54 people in November 2016. Receipt of a signed copy confirmed membership of the group. A total of 44 members confirmed membership. Since September 2016 they have been involved in a range of activities informing palliative care education, research, policy and practice across both the Republic of Ireland and Northern Ireland.

BackgroundMeeting the information needs of entire community including patients, families, carers, health and social care professionals and researchers is important in a society where online resources are an increasing source of information. Providing this information digitally in one location will reduce the burden on individuals trying to navigate the internet and multiple sources of information, which may not be appropriate or relevant.AimTo develop the Palliative Hub, as a gateway for information, education and guidance regarding palliative care.MethodDrawing on the skills and expertise of a range of stakeholders, working groups were established, which represented service users, carers, providers, charities and advocacy groups. The purpose of these groups was to assist with the design and development of the Palliative Hub, as sites to provide information, education and guidance about palliative care. The Palliative Hub whilst providing information also acts to filter and direct the user to the most relevant sources of further information.ResultsIt is anticipated that this resource will assist with meeting the palliative care information and education needs of the entire community in one place with key signposts to relevant sources and resources.ConclusionThe Palliative Hub has the potential to become an integral element in meeting the palliative care information and education needs of the entire community and is an example of an innovative and collaborative project across the island of Ireland, which could be translated across other jurisdictions.