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Health

Epistemic Exclusion and Patient Safety Participation Evaluation (EPSPE)

Conceptualising a knowledge framework for involvement, learning and change with harmed patients and families from diverse backgrounds.

Keeping patients safe (patient safety) is essential to the National Health Service, but there are many examples of patients being harmed. Evidence indicates minority ethnic groups and people with mental health challenges or learning disabilities are more likely to experience healthcare harm.

There is much interest among researchers and healthcare professionals about improving patient safety, but methods to do this have often not been developed with the groups more likely to be harmed.

This study aims to tackle epistemic exclusion in patient safety by co-producing a more inclusive patient-centred knowledge framework for evaluating medical harm and risk with diverse groups of harmed patients. The framework will be used to improve decision-making in patient safety and support harmed patients to be involved in improving safety in the future. 

This study is funded by a Wellcome Career Development Award.

Aims

Researchers will identify:​

  • Which groups are more likely to be harmed or have poor patient safety outcomes.​
  • Why these groups are more at risk.​
  • How a broader knowledge framework for medical harm that includes both clinical and non-clinical (biomedical and social) processes can address health inequalities and epistemic injustices caused by healthcare harm for diverse groups of harmed patients and family members, and impact patient safety more generally. ​
  • How working in partnership with diverse groups of harmed patients and family members in patient safety improvement can impact outcomes. ​

Methods

The research is based upon a mixed methods/participatory action research approach with four integrated care boards involving four phases:

  1. Review evidence on a) patient safety and different population groups, b) how to involve people from different groups to improve safety, c) develop a local equity, diversity, and inclusion, Patient Safety Incident Strategy for reporting into the NHS England ‘learn from patient safety events service’.
  2. Conduct 30 interviews with groups experiencing healthcare harm to understand why they think this happens.
  3. Conduct 20 interviews with health professionals to get their thoughts on achieving more equitable approaches to patient safety.
  4. Synthesise the evidence to develop and test a conceptual framework that can be used to improve decision-making in patient safety to reduce patient safety incidents across diverse population groups and understanding of harmed patients’ experiences and how they can be better involved.

Impact

Dr Josephine Ocloo has undertaken several patient leadership roles in health and /or patient safety.

Current

Former

  • Family member, National Learning From Deaths Programme Board set up by Jeremy Hunt ​
  • Helped to develop ‘Learning from deaths: Guidance for NHS trusts on working with bereaved families and carers’. 11 July 2018. ​
  • Family member/Deputy Chair, NHSE Patient Safety Steering Committee with Mike Durkin​
  • Family Member, National Patient Safety Response Advisory Panel (NHS Improvement)​
  • Worked with Dept of Health’ National Patient Safety Programme chaired by Sir Liam Donaldson​
  • Local Patient Safety Champion on the Imperial College Health Partners’, Foundations of Safety Programme for senior Board leaders across North-West London​
  • Former chair local hospital Patient and Public Involvement Forum (predecessor to Healthwatch);​
  • Parent on local hospital Clinical governance committees​
Project status: Ongoing

Principal Investigator

Funding

Funding Body: Wellcome Trust

Amount: £2,627,352.00

Period: May 2024 - May 2032

Keywords

EQUITYPARTICIPATORY ACTION RESEARCHCO-PRODUCTIONPUBLIC ENGAGEMENTPATIENT ENGAGEMENTCOMMUNITY ENGAGEMENTPATIENT SAFETYQUALITY IMPROVEMENT