Examples of our work
Involvement Leads Network
We have successfully created an Involvement Leads Network by connecting people who have roles that focus on leading involvement or engagement efforts within their organisation, both within our partnership, and outside of it. This network aims to strengthen collaboration and improve how partners develop services, research and education based on what matters most to patients and the population, through involvement, engagement and measuring patient experience.
Over the second half of 2014, various meetings were held for patient, carer and public involvement and engagement leads across UCLPartners, in which discussions demonstrated a broad eagerness to learn from each other and work together. As a result of this, we host quarterly involvement leads network forums and regular masterclasses on topics chosen and prioritised by involvement and experience leads. We have also set up a shared intranet site that allows leads to share guidance, toolkits and information to encourage coordination and collaboration. The network has provided an opportunity for collective responses to requests for help (including the genomics work mentioned below) quickly and efficiently, making use of the varied skills and experiences within our network.
Community engagement through London Voluntary Service Council (LVSC)
We are delighted to be working closely with LVSC to help drive forward the agenda to improve public health impact and outcomes with London’s voluntary and community sector. LVSC supports London’s 60,000 voluntary, community and social enterprise (VCSE) organisations to improve the lives of Londoners. It manages a number of community impact programmes supporting our cross cutting themes of improving health, employment and skills and reducing inequalities.
UCLPartners and the LVSC have jointly produced a summary of the key points made in six reports on the voluntary and community sector, published throughout 2016. The six reports are largely inspired by the NHS Five Year Forward View, which identifies the need for stronger partnerships with the charitable and voluntary sector. The purpose of the document is to help people make sense of the current VCS landscape, and understand what it has to offer the NHS and social care, and potential future ways of working. You can find the summary here.
We are excited about deepening our community engagement and work with seldom-heard and marginalised communities through this partnership.
100,000 Genomes Project
The 100,000 Genomes Project aims to collect 100,000 whole genome (DNA) sequences from NHS patients in England. These DNA sequences will be used by researchers to investigate the pattern of diseases and to explore possible treatments. The project focuses on cancer patients and those with rare and infectious diseases.
Six hospitals in north London are taking part in the project as the North Thames Genomic Medicine Centre (NTGMC), supported by UCLPartners. This north London group is working to involve the experience and expertise of patients and their friends, family or carers in key decisions about the centre. We are also working with clinicians and other health professionals across our area to ensure they are aware of patient priorities and needs when recruiting people to this important project.
A core group of involvement leads across these organisations have supported seven patient and public involvement (PPI) events for NTGMC, which have generated some insights for the development of communication and education materials. We have been working with Health Education England (HEE) to scope out the production of resources for GPs and are working with the Great Ormond St Hospital for Children NHS Foundation Trust and UCLPartners’ communications teams to provide patient and public involvement for the public-facing website.
NHS Innovation Accelerator
UCLPartners hosts the NHS Innovation Accelerator (NIA) in partnership with NHS England and in collaboration with the Academic Health Science Networks (AHSNs) across the country. The NIA aims to give patients more equitable access to cutting edge, high impact products, processes and technologies, by focusing on the conditions and cultural change needed to enable the NHS to adopt innovations that matter to patients, at scale and pace. 17 individuals with proven innovations have been offered a fellowship and are receiving a year-long programme of bespoke learning and development support whilst on the NIA.
We have worked with the NIA team to embed patient and carer perspectives and involvement throughout the programme and future development:
- More than 20 patients and organisations representing patients and carers were involved in the short-listing process and have stayed engaged in the programme design development
- Five patients and carers joined us for the 12 interview panels that were convened to assess shortlisted candidates and innovations
- Three patients and carers and an additional patient voice organisation were invited to a panel day where successful fellows pitched their plans to panels focused on different areas of expertise and sought help and challenge from these panels
- We have connected NIA fellows with appropriate patient voice and community and voluntary sector organisations that can help them better understand what matters most to the users of their innovation
- We are holding a focus group on pneumonia acquired by patients in intensive care units with patients and relatives to look at how patients, relatives and the public could help to champion the use of an innovation that reduces this. Depending on the success of this we may hold similar focus groups for other fellows and innovations
- We have recruited patient partners to sit on the NIA Programme Board, on the development group and to help us think about how we can improve our involvement efforts next year.
Patient Safety Programme
The UCLPartners Patient Safety Programme (PSP) is one of 15 patient safety collaboratives established across England in October 2014, putting patients, carers and clinical staff at the heart of patient safety improvements. Hosted by UCLPartners, the programme is part of the largest and most comprehensive national patient safety programme of its kind in the world.
It is more than a decade since calls were made to better involve patients in the safety movement but, as a recent Patient Experience Journal states, there continues to be a lack of meaningful involvement of patients and carers and they remain an “underused resource in patient safety improvement.” Moreover, patients can offer much more than simply providing feedback. Involving and engaging patients, carers and the public in UCLPartners’ patient safety efforts must be more than a moral imperative, with a genuine focus on the value added through partnership between those giving and receiving care.
The Patient Insight and Involvement team are supporting the PSP by providing advice and guidance to staff and faculty ensuring they plan and deliver a range of PPI activities that are proportionate to the task and relevant to the needs of those with whom we work. This will entail robust evaluation to capture the impact and learning from the initiatives.
I’m Still Me: a narrative for coordinated support for older people
I’m Still Me is a report published in December 2014, setting out how coordinated (or integrated) care and support looks and feels to older people, written from their point-of-view. It was based on interviews with 74 older people about what matters most to them in their lives and about the support and care they receive as well as focus groups and a literature review. It is one of four new branches of the narrative for person centred coordinated care launched in 2013, and which has been adopted by many health and care organisations including NHS England as well as individual care providers.
Laura Stuart-Neil, UCLPartners’ Frailty Programme Manager, who led the work said: “We felt it was vital to ask older people themselves about what was important to them. For me personally, it was a truly rewarding experience to hear people sharing their stories so freely. It has made me reflect on how many of the clinical services I have worked in have not truly met the needs of the population we aim to serve.”
Read more about I’m Still Me.