The Nest

Overview

‘The Nest’ is a bespoke drama, examining the opinion-dividing topic of sharing health data records. The NIHR Greater Manchester Primary Care Safety Translational Research Centre (GM PSTRC) places patient and public involvement and engagement at the heart of its research. Its public engagement activities are delivered in partnership with the Public Programmes Team (collaboration between Central Manchester University Hospitals NHS Foundation Trust and the University of Manchester).

‘The Nest’ focussed on the Centre’s Interface and Informatics theme, which works to develop digital information systems capturing routine healthcare data for better understanding of patient safety and to facilitate quality improvement in primary care. The use of digital information systems in healthcare offers a great opportunity to share health data, and has the potential to provide safety benefits both for individuals and society. Communication and safety issues may occur when an individual’s healthcare passes between primary to secondary care. More systematic safety issues can be identified when large numbers of individual health records are analysed together. In this way, sharing health data can benefit society.

What we did

The team commissioned local theatre company, Strawberry Blonde Curls, to write and produce an audience-active, adult-focussed piece of bespoke theatre that explores patient safety issues. The project ran from May to October 2015, and culminated a performance of ‘The Nest’ as part of Manchester Science Festival. The performance was free to attend, and open to all and it was live streamed with a dedicated Twitter hashtag #ShareMyData to capture further opinion online. We held a screening of the play a week later for researchers. The post-show and post-performance Q&A were transcribed and thematically analysed to evaluate whether we met our objectives.

The play was followed by a Q&A discussion led by the Interface and Informatics Project Lead Dr Niels Peek, during which the audience had the opportunity to express their ideas and concerns about the topic. The discussion involved a wide range of age groups and touched on many different matters that ranged from the UK care, data program to pharma companies accessing health data, as well as the advantage and disadvantages of sharing health records for routine care and research. Other related themes were also discussed, for example, the audience raised concerns in merit of what Google knows about us and how they use the information that they gather and store.

Key findings:

  • Performance creates a tangible, human story, providing a hook into a complex research topic
  • Using performance helped to enable a conversation to start without dictating ‘answers’
  • Limiting numbers, selecting venues carefully and having post-show discussions with researchers creates in-depth engagement and rich discussions; using associated online media helped to increase the reach of The Nest
  • Researchers were initially nervous of a performance, but relished the creativity of the format through co-creation and co-delivery of the piece
  • Having patient voices in the development of The Nest ensured relevance and sensitivity of the engagement
  • A partnership of public engagement professionals, researchers and creative partners is effective in delivering high-quality, innovative engagement.

Legacy

The development and delivery of the project, together with a thematic analysis of the post-show discussions are being written up for publication.

The Nest has secured further funding for future performances and development, including as installation.

Click through our storify below to see some of the tweets and photos during the project.