Patient and Public Involvement and Engagement — PPIE — is the practice of including patients, carers, and members of the public as active partners in research, rather than simply as subjects of it. In cardiac arrest research, genuine PPIE means ensuring that the people who have lived through cardiac arrest have a meaningful say in what gets studied, how it gets studied, and how the findings are translated into care.
SCA UK has been a PPIE contributor to cardiac arrest research, guideline development, and clinical programme design for over a decade. This page outlines why we believe PPIE matters and the work we have been involved in.
Why PPIE Matters in Cardiac Arrest Research
Cardiac arrest research has historically focused on the resuscitation event itself — survival to hospital discharge, ROSC rates, the effectiveness of interventions in the chain of survival. This is critically important work. But it captures only a fraction of what matters to the people who survive.
What survivors and co-survivors care about — fatigue, cognitive difficulties, psychological trauma, the impact on relationships and employment, the experience of receiving an ICD shock, the absence of adequate follow-up care — has largely been invisible in the research literature because researchers were not asking survivors what mattered to them. PPIE exists to change that. When patients are involved in shaping research questions, designing studies, interpreting findings, and disseminating results, the research produced is more relevant, more credible, and more likely to lead to improvements in care.
For an organisation like SCA UK — with thousands of members who have direct lived experience of every aspect of cardiac arrest survivorship — meaningful PPIE is not an add-on. It is the point.
Our PPIE Contributions
V-CARE — Essex Cardiothoracic Centre
SCA UK has a longstanding partnership with Professor Tom Keeble and the team at the Essex Cardiothoracic Centre (CTC) at Basildon Hospital. The V-CARE programme (Vulnerability in Cardiac Arrest Rehabilitation and Experience) was developed with direct input from SCA UK members to understand and address the rehabilitation needs of cardiac arrest survivors — including the gap in provision for those whose arrest was not caused by a heart attack and who are therefore often excluded from standard cardiac rehabilitation pathways. Our PPIE role has included shaping research questions, reviewing patient-facing materials, and contributing survivor perspectives to the development of care models.
RESCQ — Essex Resuscitation Quality
RESCQ (Resuscitation Quality) is a collaborative programme involving the Essex Cardiothoracic Centre, East of England Ambulance Service (EEAST), Essex and Herts Air Ambulance (EHAAT), and RESCQ lead Dr Uzma Sajjad. SCA UK has contributed to RESCQ as a PPIE partner, bringing the survivor and co-survivor voice into programme design — including the development of the CoSTRiM programme (Co-Survivor Trauma Risk Management), which adapts the military TRiM framework for lay rescuers who have performed CPR. Our focus has been on ensuring that the psychological needs of bystanders and co-survivors are recognised and addressed alongside those of the survivor.
CARESS — Warwick CTU, University of Warwick
CARESS (Cardiac Arrest Rehabilitation, Education and Support Study) is a research programme led by Professor Kirstie Haywood at the Warwick Clinical Trials Unit, developing and piloting online rehabilitation support programmes for cardiac arrest survivors and co-survivors. SCA UK has contributed as a PPIE partner throughout, helping to ensure the programme reflects what survivors and co-survivors actually need — not what researchers assume they need. The CARESS work is directly relevant to addressing the widespread gap in psychological and rehabilitation support following cardiac arrest discharge.
Young CPR Givers — Warwick / King’s College London
SCA UK has contributed PPIE input to research examining the experiences of children and young people who have performed CPR — a growing and largely unrecognised group of co-survivors. Young people who witness a cardiac arrest and attempt resuscitation face particular psychological challenges, yet there is almost no clinical provision for them. Our contribution has been to draw on the lived experience within our community to help frame the research questions and ensure the findings are grounded in what these young people and their families actually go through.
Resuscitation Council UK — Survivorship Quality Standards
SCA UK was a PPIE contributor to the development of the Resuscitation Council UK Quality Standards for Care and Rehabilitation of Cardiac Arrest Survivors and Key Supporters, published in 2024. These standards — the first of their kind in the UK — set out what survivors and co-survivors should be able to expect from post-cardiac arrest care. Our contribution ensured that the standards reflect lived experience as well as clinical evidence, and that the language and framing reflect survivorship rather than just survival.
ERC Guidelines 2025 — European Resuscitation Council
SCA UK founder Paul Swindell served as a PPIE collaborator on the European Resuscitation Council (ERC) 2025 Guidelines, contributing to the Post-Resuscitation Care and Ethics chapters. This represented the first time a patient organisation has contributed directly to the ERC guidelines process in this way — a significant step in the formal recognition of survivor expertise within international resuscitation science. Paul also presented three times at ERC Congress 2025 in Rotterdam, including sessions on survivorship outcomes and ethics.
Working With Us
If you are a researcher, clinician, or organisation developing a study or programme related to cardiac arrest and are looking for PPIE input, we would be glad to hear from you. SCA UK brings a unique combination of breadth — thousands of members with direct lived experience — and depth, with a leadership team that has been working at the intersection of survivorship and research for over a decade.
We are particularly interested in collaborations that address survivorship outcomes, co-survivor experience, rehabilitation provision, and the long-term psychological and neurological after-effects of cardiac arrest. Please get in touch to start a conversation.