Knowledge Mobilisation Alliance: Improving how researchers share evidence with patients, carers and members of the public

Summary

We worked with academic health researchers in the UK Knowledge Mobilisation Alliance to deliver an Innovation project for the NIHR Centre for Engagement and Dissemination. The project explored how public contributors (people with experience of the healthcare system as patients or carers) look for and engage with health research findings online. We demonstrated, through Think-Aloud interviews, how a user-centred approach could help research stakeholders to structure the content with the patient or carer in mind and make better use of online navigation and visual cues to support patients and carers to find evidence in the first place.  

Background

The National Institute for Health and Care Research (NIHR) has a mission to improve the health of the nation through research. This includes making the results of research available to patients and the public, so they can have access to findings that could make a difference to them. We have worked on several NIHR-funded programmes in recent years, including the design and development of NIHR BioResource website and the user research and prototype development of GP Evidence, a web app designed to help doctors make better informed, evidence-based treatment decisions. 

The KMA is a network of Knowledge Mobilisation experts. Knowledge Mobilisation involves getting the findings from research out to people who can use them, but also recognises that working with those end ‘knowledge users’ can make research itself more relevant to them. Members of the KMA from Keele University, the University of York, and Sheffield Hallam University, had worked with public contributors and saw how difficult it was for people living with health conditions themselves or a carer to find and understand research evidence. They wanted to explore in more depth how public contributors looked for health research online and what happened when they got to typical research reports, with the goal of understanding what improvements could be made.  

The approach 

We saw that a user-centred approach could help in improving outputs. Lynn Laidlaw, a patient contributor who worked with us on the project, explains: 

To achieve this, we conducted Think-Aloud testing with 11 public contributors. This involves an interview asking the contributor to say out loud as much as they can about what they’re doing and why. This allows us to follow along with how people would behave and react, to understand what they typically do and what they’re trying to achieve. As test materials, we chose two legacy Themed Reviews on the NIHR website, to help us get a sense of how people engage with typical academic reports. We started the interviews by asking how the contributors themselves would look for evidence online, as academic research to date has tended to present an output to participants without considering how they can reach it online. We also wanted to understand why the participants would look for evidence, and what they hoped to gain by engaging with it. Again, this was a contrast to existing research which tended to define successful engagement in terms of comprehension of the material, rather than taking a user-centred approach and thinking what needs patients themselves might be trying to meet.

What we achieved together 

We identified several ways that research evidence online could be made easier to find and engage with. The participants tended to start with Google and look for research related to a particular condition, suggesting that titles need to be clearer and more informative. They also wanted to trust the information, for example being signposted to evidence from other trusted sites (such as charities) and seeing logos that showed the evidence was from legitimate sources. The evidence outputs themselves needed to be re-structured to make sense to the patient or carer, with a clear indication of who the output was for, and a nested approach that started with broad findings but linked to further details.

Notably, this is different to how typical academic reports are structured and demonstrated the importance of a user-centred approach to seeing how patients and carers themselves want to engage with information. Public contributors wanted the content to have an understandable flow and to be meaningful to them. This meant for example providing patient stories to ground the evidence and show why research like this is important.  

We also supported a collaborative workshop between health researchers, clinicians and public contributors, to think about the lessons learned and empathise with the barriers that researchers face when improving evidence outputs, such as lack of time or lack of funding to work with content and information specialists. This enabled the different stakeholders to reflect together on how they can collaborate to improve research outputs in future.  

The impact we made 

The KMA produced a one-page graphic to share the findings about improving evidence - https://kmalliance.co.uk/drawing-in-the-experts/ and a twitter thread and tweet chat. This was shared by the Health Research Authority, the NHS Research & Development Forum, the National Co-ordinating Centre for Public Engagement, the NIHR School for Social Care Research, Evidence Synthesis Ireland, the Canadian Centre for Implementation, Health Research Board Ireland and Cochrane UK .  

The work was also presented as part of a Learning and Development Session co-ordinated by NIHR CED on “Making health research accessible, transparent, and valuable for patients, service users and the public” at the HSRUK (Health Services Research UK) Conference in 2022 

The KMA has made the one-page graphic and the individual images available to re-use.