Published: 03 February 2023
Lindsay Bearne and Helen Baxter, NIHR Senior Research Fellows (Knowledge Mobilisation) along with Tina Coldham, Mental Health User and NIHR public advisor discuss how to make health research and information accessible for everyone.
While health services are under pressure, many people are keen to do what they can to take care of themselves and manage their own health and care. To do this they need clear and reliable evidence-based information.
We know that members of the public encounter many hurdles when searching for trusted health or care information. Recent research told us that there may be issues with the way information is presented (e.g. language) or how it can be accessed (e.g. cost or convenience). The quality of the information may mean it is not relevant, personal, or trusted. Some people may also have limited resources to help them effectively search for and use health information. This could include a lack of time, technical, digital or literacy skills. Searching for good quality information can be even more difficult if the topic or condition is considered distressing or embarrassing.
Researchers and research funders are striving to make research findings available to everyone. So, how can we do this well?
How can you get your message across?
When it comes to sharing research, it is crucial to work with and understand the needs of the people who will be using the results. This will help you develop a tailored, nuanced approach – which communication channels to use, what format to present your research in, which information should be presented and in what order! All researchers should aim to make their content freely available, culturally relevant, easily understood and shared.
It’s also important to recognise and consider differences across different groups of people. Factors such as culture or educational status may influence how they seek out information. Some groups may be reluctant to seek health research or information. This can also be the case for some health conditions, such as those that are embarrassing or stigmatised. So, you may need to use multiple approaches to help overcome these barriers.
As an example, a study exploring health-seeking behaviour in members of South Asian and Black communities showed that community members wanted to get health information from the NHS website or their General Practitioner. However, if the information was not personalised or relevant to them or if expectations related to General Practitioner access weren’t met, they sought further information from their family, community leaders or organisations. They also valued information from credible and trusted sources on social media. These were regarded to be an extension of family and communities. In this case, working with intermediaries such as local health practitioners or community leaders, or sharing simplified messages and visual images on social media may be helpful to share your research.
How can you improve written information?
Written summaries are often the first way that researchers try to communicate their research to members of the public. But what works? NIHR supported some research that asked members of the public to assess some of their publications. The team found that, most importantly, summaries for patients shouldn’t be presented like a paper! Written summaries should be short, use plain language and avoid jargon. For example, sometimes the terms ‘research’ and ‘evidence’ are not widely understood.
We also shouldn’t rely on the layout of traditional research papers. People wanted to know who the information was for and what the key findings were. Then, if they were interested, have the option to discover more details. As with the study including members of the South Asian and Black communities, people wanted key messages to be relevant and personal to them. You could include stories of lived experiences to help people make sense of the research and bring the information alive. This adds credibility to your research. Discover more tips for communicating your research findings here.
But you don’t have to limit yourself to written formats – why not get creative? There are lots of ways to share your key research messages such as podcasts, videos and infographics. Don’t forget that visual formats are particularly useful for sharing on social media and could also help overcome language or literacy issues. There are also some great examples of research being conveyed using theatre, poetry and other art mediums.
What is NIHR doing?
The NIHR open access policy supports researchers to make sure their research is immediately, freely and openly accessible to everyone. Our NIHR Evidence team also produces summaries of some published studies and articles that bring together evidence on popular topics. We have worked hard to take on board the suggestions in this blog. So, why not look at the NIHR Evidence website and our social media channels to see how we’re doing?
Lindsay Bearne is also Professor of Physiotherapy & Rehabilitation at St George’s, University of London and Helen Baxter is a Research Fellow in Knowledge Mobilisation at ARC West. Tina Coldham is a mental health user consultant, trainer and researcher.
This blog is based on our Health Service Research UK session ‘Making health research accessible, transparent, and valuable for patients, service users and the public’. This was presented by Professor Lindsay Bearne, Dr Helen Baxter, Mrs Tina Coldham, Dr Celayne Heaton- Shrestha, Dr Sarah Knowles, Dr Kristin Hanson and Prof Tushna Vandrevala.