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The Human Experience Perspective 

In exploring the value that the experience service users and carers bring to education and research, we heard from teams across research and education settings who are collaborating with valued public contributors to improve the work that they do.

Key Learning from the sessions:  

  • The lived experience of real patients and carers is important in education to shape the future health and care work force. It encourages them to see patients as human beings not just diseases. Involvement improves the quality-of-care and drives quality and service improvements. It can inject reality into students learning and enhance the experience.
  • Public contributors that are living with long term conditions or have ill health can often feel useless like they have nothing to bring. Involvement creates opportunities for this experience to be an asset.
  • From the public contributors’ perspective, it can build confidence and empower people to become active participants in their own care and treatment.
  • The support offered to public contributors is key to creating a positive experience. Peer support where public contributors learn from each other informally can often be more valuable than formal training and resources
  • Co-production can be challenging and takes time. One size does not fit all so different approaches are needed for different people.  We need to ensure that what we create together is adaptable and responsive to changeas different populations will have different needs. It can be useful to work iteratively (a process of continually refining what has been created) so it is fit for purpose for all those involved.
  • A multi-disciplinary approach to co-production is needed so true partnerships can be forged between researchers, academics, health care professionals and the public. “The sum of the whole is greater than the sum of its parts”
  • It is important to think about the roles that people may need to take on and how public contributors can be supported in this, for example, co-chairing or co-facilitating meetings /discussion groups so that power is shared.
  • We need to consider the inclusion of people of working age. Employment often excludes those that are working if all activity is undertaken in office hours
  • Feedback to participants is extremely important to maintain motivation – how has their involvement made a difference?
  • Most importantly celebrate the success  - celebrate and reward contributions

Presentations from the Human Experience Perspective sessions

The Service User and Carer Initiative as part of a teaching and learning strategy in Higher Education

Bimpe Kuti (Universit of Bolton) and Abi Idowu (Service User) 

Co-producing a primary care patient safety guide for patients and carers: a multi-component (paper, mobile application, and support package) tool

Rebecca Morris and Kay Gallacher NIHR Greater Manchester Patient Safety Translational Research Centre

The role of the public involvement group PRIMER in the Centre of Primary Care and Health Services Research at the University of Manchester.

Isabel Adeyemi on behalf of the PRIMER team (Primary Care Research in Manchester Engagement Resource)

Co-production in research projects: My Experience

Rachel Meacock

Understanding Personal Shielding Stories: The voice of people living with arthritis and musculoskeletal disease

Charlotte Sharp; Joyce Fox and Lynn Laidlaw. COVID Shielding Voices

Involving Communities: celebrating and rewarding in different ways

Stephanie Snow; Sam Franklin; Kelly Gallacher; Hawys Williams

Co-developing a Public Involvement and Engagement App with young people

Pauline Whelan, Charlotte Stockton-Powdrell, Simon Foster.

Vaccine Equity Study - Advisory Group

Stephanie Gillibrand, Ruth Watkinson and Caroline Sanders