Gathering and use of patient and staff stories

‘If we want to know how a person feels, we must begin by acknowledging the fact that there is one and only one observer stationed at the critical point of view…she is the only person who has even the slightest chance of describing ‘the view from in here’, which is why her claims serve as the gold standard against which all other measures are measured.’

(Gilbert 2006:73)

RE: Information request - the gathering and use of patient/staff stories to inform care

Update March 2019 Story Gathering Toolkit

From the call out for information supported by NHS England which took place during 2018 to organisations that potentially use stories to improve healthcare we identified 5 national and 8 regional frameworks together with a number of supporting resources e.g. examples of evaluation templates. At the same time a scoping of the literature took place with the aim of identifying evidenced based approaches to the story gathering process. A toolkit is now being launched from these collated findings with a view to testing the first version following ethical approval in education, research and implementation settings.

We will update this area as soon as we have further information.

In the interim we would like to acknowledge the generosity of the following organisations for sharing information:

  • Aintree NHS
  • Arts in Health wales
  • Caesarean Birth
  • Cornwall Rural Community Charity
  • Disability Rights UK
  • East Cheshire NHS
  • East Lancashire Hospitals NHS Trust
  • Great Ormond Street Hospital
  • Greater Manchester Mental Health and Social Care Trust
  • Hampshire and Isle of Wight STP
  • Health Talk Org
  • Healthwatch Dudley
  • Healthwatch Sandwell
  • Healthwatch Stoke
  • Healthwatch Wokingham
  • Hertfordshire Partnership University NHS Foundation Trust
  • Hospice Biographers
  • Kings College London Nursing and Midwifery
  • Lancashire NHS Trust
  • Leicestershire Partnership Trust
  • Medway NHS Foundation Trust
  • NHS England
  • NHS England Leeds
  • NHS Nottingham City Clinical Commissioning Group
  • NHS Southwark Clinical Commissioning Group
  • NIHR Oxford
  • Norfolk Middlesex University Hospital NHS Trust
  • North West Ambulance Service NHS Trust
  • Northern Lincolnshire and Goole NHS Foundation Trust
  • Patient Experience Library
  • People in Health West of England
  • Sheffield Teaching Hospitals NHS Foundation Trust
  • Shrewsbury and Telford NHS Trust
  • Shropshire Community Health NHS Trust
  • Southern Health NHS Foundation Trust
  • Stockport NHS Foundation Trust
  • The Whole Story
  • University Hospitals North Midlands NHS Trust
  • University of Northampton
  • University of Southampton
  • University of Oxford
  • WIN WIN Alliance

Updated on behalf of the Storytelling project team.

Dr Sue Ashby
14 March 2019

Background

The use of patient stories has been recognised globally as a way in which the patients’ experience can be captured to inform the delivery of quality healthcare (The Point of Care Foundation 2017; World Health Organisation 2017). Integrally linked to the practice of patient and family centred care, healthcare leaders have acknowledged that improving patient experience is now a legal requirement and top priority (Health and Social Care Act 2012; Wolf et al 2014). In response to this frameworks have sporadically emerged to support organisations in their story telling endeavours.

Based on a previous study undertaken in the Midlands and East Region by one of the research team, it is known that there are a number of frameworks used by organisations that are not in the public domain (White 2014).
Additionally early scoping of the available literature suggests of the publically available frameworks there are limited or no visible accompanying evidence or evaluation validating their development and continued use. 

Sue Ashby - Photo for Website Stories 2017

A previous realist evaluative study highlighted the progress that had been made over time in the Midlands and East region. The end result was the development of a specification for a storytelling programme which identified the desired components of the service within an organisation.

Based on the evidence supplied a secondary analysis of this research data revealed strengths, limitations and gaps that existed within the region. Building on this previous study, there is therefore a need to identify further information and synthesise existing guidance as a means of creating a body of knowledge within an evidence based draft framework aimed at supporting the gathering, use and learning from stories. In addition there is a need to identify the support given to staff, patients and their families/carers throughout this process. 

The need for a validated framework for the gathering and use of patient/staff stories to inform care was recognised by members of this project team as this previous study concluded and during storytelling endeavours within education. Questions were raised in relation to: the ownership of the story; ethical and legal considerations; how stories are sourced; how stories are adapted to differing audiences; individual and organisational learning and open and transparent sharing of the learning supporting the story teller and the listener; and responsibilities around staying true to the essence of the story within the interpretation of the shared experience. Whilst credible guidance can be sourced around the use of stories in research, as stories are increasingly being used in education, training and service improvement, it is apparent that other considerations are required.

Project

Working in partnership with acknowledged experts in patient and public involvement and engagement, this project will achieve expertise from research, education and practice. These are all identified areas in which patient stories are recognised as significant to inform the delivery of high quality care (Wolf et al 2014).


A clear and concise evidence based toolkit, which will facilitate a supportive approach to the identification, collection, mode, support, evaluation and process of proactively utilising patient stories will be created to positively benefit providers and commissioners of health and social care, health care education and researchers. Based on the collective evidence and better practice to date, the toolkit will enable a one stop point of reference reducing time in searching for appropriate information with the aim of supporting:

  • commissioners (e.g. in commissioning for a positive experience and assurance processes)
  • providers (e.g. in quality care provision)
  • professionals and volunteers (e.g. appropriate infrastructure/support mechanisms to obtain, gather, share and learn from stories)
  • the individual sharing their experience (e.g. being valued, being heard, being supported to celebrate or improve care provision)

Consultation stage

Aims:

  • undertake a comprehensive review of the published literature
  • undertake a scoping exercise working via STP leads in England to identify any undiscovered frameworks currently in use (led by Dr Sue Ashby/Rachel White)
  • content analysis of findings (led by Dr Sue Ashby/Rachel White including clinicians/patients/carers)

This information will inform the development of an evidence based draft framework which will then be subject to further work to test and evaluate its use in practice and education environments with interested clinical partners and patient/carer groups.

References

Gilbert, D (2006). Stumbling on Happiness. New York: Knopf.

Health and Social Care Act 2012, c.7. Available at: http://www.legislation.gov.uk/ukpga/2012/7/contents/enacted Accessed 2.7.17

The Point of Care Foundation. (2017). Humanising Healthcare. London: The Point of Care Foundation Accessed 27.6.17 https://www.pointofcarefoundation.org.uk/

McIntyre, L., White, R. (2014). What’s the story with patient stories? NHS England Midland and East. Accessed 2.7.17 https://www.england.nhs.uk/mids-east/wp-content/uploads/sites/7/2014/10/pat-whats-story-stories.pdf

White, R. (2014). What’s the story? Storytelling in the NHS (Midlands and East). Part One, Realist Evaluation Study Findings. NHS England. Accessed 27.6.17 https://www.england.nhs.uk/mids-east/wp-content/uploads/sites/7/2014/09/pat-stories-eval-part1.pdf

World Health Organisation. (2017) Patient Stories [online]. Accessed 27.6.17 http://www.euro.who.int/en/health-topics/Health-systems/pages/personal-stories/people-centred-health-systems-voices-of-patients-and-carers

Wolf, J.A., Niederhauser, V., Marshburn, D., LaVela, S.L. (2014) Defining Patient Experience. Patient Experience Journal: 1: 1 Article 3. Available at: http://pxjournal.org/journal/vol1/iss1/3 Accessed 2.7.17

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