Learning from experiences: exploring the potential for understanding care and health systems through patients' eyes

Workshop category: 

  • Understanding and using evidence
Date and Location

Date: 

Tuesday 18 September 2018 - 11:00 to 12:30

Location: 

Contact persons and facilitators

Contact person:

Facilitators:

Hinton L1, Oluoch D2
1 Nuffield Department of Primary Care Health Sciences, Oxford University, United Kingdom
2 KEMRI Wellcome Trust, Nairobi, Kenya
Target audience

Target audience: 

Participants interested in exploring potential for patient experience evidence, in particular from LMICs

Level of difficulty: 

Intermediate
Type of workshop

Type of workshop : 

Discussion
Abstract

Abstract:

Background:
" ... narrative is often maligned as anecdote and thus scrubbed from the toolbox of guideline developers, epidemiologists and regulatory scientists, these experts should consider narrative to develop and translate evidence-based policies." (Zachary & Karlawish, JAMA 2011).

The endeavour of collecting, understanding and using patient experiences has expanded and matured in recent years. One particularly rich source is patient narratives, which have the power to engage hearts as well as minds, encouraging others to rethink attitudes and motivate change. The UK's Healthtalk.org and its sister projects in 12 other countries (dipexinternational.org) are examples of patient narratives collected as a resource for patients, relatives, policy makers and health professionals in practice. These studies have been used to improve medical training and stimulate health service improvement, through participatory action research approaches such as experience-based co-design. In low- and middle-income countries (LMICs) patient accounts are rarely sought and have not been seen as a credible source of evidence, but are often dismissed as soft intelligence, that is not measurable. How can we encourage a different view?

Objectives:
1) To understand the challenges to collecting and utilising these kinds of patient and staff experience data to guide research, inform practice and health system improvement in LMICs.
2) To explore how evidence from patient and staff experiences might be used in other areas; prioritisation, reviews etc?

Description:
The workshop will start with a brief introduction to patient narratives research undertaken in high-income countries (e.g. UK and Australia) (15 minutes) and show a short film, produced from pliot work in Kenya with mothers who have had a preterm baby (10 minutes). This will be followed by a 5-minute 'buzz session' where participants turn to their neighbour and discuss key issues arising from the talk and film. These will be fed back (10 minutes) and topics selected for further discussion in facilitated small groups (e.g. challenges in the production of this type of evidence, potential avenues for its use) (30 minutes). Groups will summarise their discussions on Post-its that will be presented back by the organisers as a quick thematic analysis to wrap up and discussed in keynote (20 minutes).

Relevance to patients and consumers: 

Patients, their stories and perspectives, are at the heart of this workshop. We will present patient narratives research from high-income countries and illustrate the many ways that it can inform policy and practice. We will then show a film made with patients in Kenya and encourage discussion and debate about the potential for harnessing patient and staff experiences in low- and middle-income settings.