Empowering the patient voice

Impact Review

PETER KINDERSLEY Focus on: patient and public involvement The COVID-19 pandemic forced healthcare services to rapidly innovate and adapt how they delivered care to ensure the safety of both patients and clinicians. The pace of change meant patient and public We are passionate about public and patient involvement and want the East of England health and care challenges of engaging locked-down stakeholders, we continue to support healthcare providers to ensure that patient We have delivered this through three workstreams: creating spaces for patients, empowering patient leaders and Creating space for patients to influence health services We supported the Cambridge Rare Disease Network (CRDN) with RAREfest20, sponsoring the bi-annual public event and using the occasion to launch a survey to better understand the everyday challenges faced by people living with rare diseases, including families and carers. Because of the pandemic, the event was run online, which presented an actionable challenges that we will put to the innovation community to make sure we turn insight into health impact. You can read more about this work in more depth in our Focus This wonderful course is teaching me so much more than I ever thought I understood about humility and curiosity on: rare diseases article. For the past four years we have proudly hosted the East of England Citizens Senate, which provides clinical networks and other regional healthcare structures with insight, information and hand experience of living with long-term conditions or care for someone who does. Their breadth of experience means we can An example of this is our work with Cambridgeshire and Peterborough NHS Foundation Trust and partners to lead a bid for a new innovation hub to support the adoption and adaptation of innovations across the Cambridgeshire and Peterborough Integrated Care System (ICS), with patient and public involvement representation at its core. We worked with the countys Healthwatch, the Citizens Senate and local providers patient groups to use existing forums to gather of a launch for the hub in summer 2021. Empowering patient leaders Listening to patients isnt enough. For services to be truly patient-focused, feedback needs to Citizens Senate, and with sponsorship from NHS Leadership Academy, we delivered a four-day leadership training course, for free, to patient and public representatives. The programme empowered 21 participants this year to develop the skills, knowledge and behaviours to underpin collaborative and meaningful relationships with NHS decision-makers as they shape the services in our region. humility and curiosity. The stars are aligning on so many levels. I felt it as soon as I stepped into the Zoom room! At Eastern AHSN, we strongly believe that people should be valued as experts in their own lives. We previously worked with planners for the Northstowe development to use an innovative, community-based approach to qualitative research commonly referred to as identify priorities and make decisions about their own future. This year, we worked with Cambridgeshire and Peterborough Clinical Commissioning Group (CCG) to apply a participatory appraisal approach to understanding and addressing poor uptake of smoking Click here to learn more about participatory appraisal been paused because of the pandemic, but we are eager to apply the learnings to encourage a healthier population and address health inequalities in the region. Patients have also shaped how we talk about our services in 2020/21, as we continued to work with maternity voice partners, alongside midwives in maternity units across the region, to embed the preventing cerebral palsy in preterm labour (PReCePT) antenatal administration of magnesium sulphate (MgSO4) to mothers during preterm labour. By coproducing patient materials with these representatives, we have been able to ensure the language we use and the resources we provide are written by patients, for patients. Gathering insight and involving patients only leads to impact when learnings are put into practice and shape the healthcare system. As we continue to partner with innovators looking to grow their business and make a positive impact on patient care, patients play a vital role in helping choose which innovations we support as part of our Innovation Review Panel. Having patient perspectives at this early stage provides vital insight for innovators. This year, we have been supporting PEP Health, whose Patient Experience Platform uses AI to automate the collation of patient experience data in real time from multiple sources, including social media and online patient forums, to provide PEP Health to develop their communications and help organisations understand how they can use the platform to inform their quality improvement and patient insight strategies. We continue to also be at the forefront of using patient data responsibly in research as a partner in Gut Reaction, the Health ensure that patient co-design and responsible use of data is at the heart of how we manage data access requests for academic and industry research. The Gut Reaction Patient Advisory Committee has played a vital role in changing the culture of health data research by encouraging greater patient involvement in procedures in place to manage data access applications. We are also working with the NHS regionally to develop how we better involve the public in how we evaluate our programmes. Click here Learn more about Gut Reaction at www.gut-reaction.org Good patient and public involvement needs to go beyond implementation and inform what success looks like from the publics point of view. This is particularly true as we look to understand the implications of the pandemic on access to healthcare services. Where many found digitalisation of healthcare refreshing, it also highlighted the inequalities and more about PEP Health We are delighted to be launching our patient and public involvement (PPI) toolkit in the coming months, aligned with that of the AHSN Network national strategy, signalling our lasting commitment to the integral role that PPI must play as we move forward together. As we begin the long recovery ensure that patients and the public are helping to co-create and drive this important agenda forward. Share this article Learn more If you would like to learn more about how we can help you develop your patient involvement strategy, contact