Is open publishing really open to the public?

Co-designing public facing materials to accompany published research, using a case study on health data research

Abstract

Often journal articles and other common scholarly outputs are inaccessible or incomprehensible to readers who do not work in the field, even when made openly available. Exploring alternative mechanisms around science communication is an important issue in addressing equity and diversity issues in open research. 

Routinely collected health and administrative data is used in research across the globe to address the critical health challenges of our age, including mental health crises, health inequalities and response to pandemics. Few members of the public know that their anonymised data is lawfully used in research. This makes it especially important that the outputs of such research communicate openly and accessibly about the work that is going on. Embedding participatory methods throughout projects can improve their legitimacy and impact. Using co-design to produce research outputs improves the diversity of patients and members of the public who can engage with the research in a meaningful way.

In this presentation, we will describe a participatory co-design method for producing communication materials about science which are accessible and transparent for a wide audience. We present a collaborative UK project between Brighton and Sussex Medical School, and Akrivia Health Ltd, a company which curates mental health data for NHS, academic and industry research purposes, in particular by developing clinically-informed AI to derive medically-relevant information from unstructured clinical notes.

Objective: Akrivia Health wanted to make patient facing information material about their data curation and research services, so that patients would know how their data were being used.  

Method: We recruited six patient representatives across Southeast England, and held online and face-to-face sessions, working to achieve accessibility for participants with diverse needs. We hosted one session of information giving (online) and a day-long in-person session of deliberation and design, using the nominal group technique. Suggestions were generated about what information should be contained in the infographic, which graphics should be used, how it should be worded, and where the infographic should be publicised.  Suggestions were grouped by facilitators, and then prioritised by participants. A mock-up infographic was created, and additional feedback offered. A later iteration of the infographic was sent to participants and email feedback received. Participants were paid £190 for their full participation and reimbursed for travel expenses.

Results and Conclusions: Workshops provided detailed design of the infographic in terms of the graphics, layout, quantity of words and content. There was high engagement from PPI members who mentioned they felt listened to and felt they had contributed to something concrete, particularly since they saw the infographic created in real time. The final infographic was very different to that which the Akrivia team had envisaged prior to the consultation. We learned: “what you think people want is often very different to what they do want”.