A Participatory Action Research Project into the Implementation and Evaluation of My Healthcare Passport

Leader(s)Daniel Marsden, Mandy Carliell, Rachel Giles, Deborah Bridger, Susan Abeles, Caroline McKenzie, Tina Walker, Glenda Roberts
LocationEast Kent Hospitals University NHS Foundation Trust
DurationMarch 2012 – September 2015
Received for PublicationDecember 2016

Evidence indicates that people with learning disabilities in the UK experience significant health inequalities and issues with access to healthcare. In response, a participatory action research project to implement and evaluate My Healthcare Passport in East Kent Hospital University Foundation Trust (EKHUFT). My Healthcare Passport is a tool owned and completed by the person with learning disabilities to support healthcare professionals provide person-centred, safe and effective care.

A co-researcher team made up of people with learning disabilities, hospital clinicians, parent carers, care home staff, used creative practice development methods and fourth generation evaluation to engage with stakeholders.

Three spirals of activity were identified to improve awareness and use of My Healthcare Passport, while information technology solutions are being explored to both safeguard personal details and ensure greater accessibility.

Reflection and review on the project uncovered two journeys relating to the co- researchers role understanding, and collaborative action, exposing issues of status and participation.

Implications for employing people with learning disabilities, knowledge mobilisation in learning disability nursing, monitoring of reasonable adjustments and engaging multi stakeholder groups of differing abilities and cultures in research activities have been identified.

Click here to watch a video summary about the project.

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