The Information and Knowledge Service team here at The King’s Fund receives numerous enquiries from members of the public and patients telling us about their health and care experiences, and some of these stories relate to the information they have been given as part of their treatment or about a condition. Evidence-based information is essential for improving patient experience, supporting self-management and enabling shared decision-making. Engaging patients and the public is a key priority at both national and local level throughout the NHS. The NHS long-term plan outlines that ‘over the next five years the NHS will ramp up support for people to manage their own health’ and recent guidance from NHS England states that by involving ‘people in their health and care, [they] experience better quality care and improved health and wellbeing, and the system makes more efficient use of resources.’
As part of a Health Education England senior leadership programme, I have been working on a project focused on how evidence-based information is used for good quality patient information leaflets. The project team includes three NHS librarians – from a community, a mental health and an acute trust –along with two health knowledge specialists and me from a health policy library, and aims to influence and advocate the importance of evidence for health information for patients, carers and the public in healthcare settings.
We initially undertook a literature search to understand what is currently known about evidence-based health information. Over the course of a year, we gathered learning and insights from peers already involved in supporting the production of patient information, which helped us identify both challenges and opportunities for health library services. The picture we were presented with was quite mixed. There were examples of exemplar work, where libraries worked directly with clinical staff in reviewing existing leaflets produced locally, where they were able to update the supporting evidence and influence the language used to ensure it was clear and understandable for patients. However, challenges were also identified. Processes and policies were often in place but it was difficult to ascertain whether processes worked effectively or how policies were reviewed. There was limited capacity within library teams to take on what might be seen as additional work, and locating all patient leaflets within a trust which could range from 200–2,000 leaflets was difficult. Finally, it was difficult to know who actually authored leaflets or whether they had been updated recently.
A key issue for library staff was knowing who to influence within their local NHS trusts and how to influence them, understanding their perspectives and priorities. We found there was a useful link in with the reported levels of low health literacy in the population, which helps us advocate the importance of quality health information for individuals. Engaging effectively with key stakeholders at a local level was seen as both difficult at times and also a lever for libraries to demonstrate their role, whether this was influencing communications teams, business managers and patient experience teams, or working directly with service users.
Where health library services have embedded patient information as part of their service offer, staff have been able to positively influence the production of patient leaflets and utilised existing relationships to offer advice on not only on the evidence base, but also the language used to communicate health information. Some libraries have demonstrated the impact of their role through time saved for clinical staff, their expertise in sourcing information and mitigating organisational risk.
Overall, we found health libraries can play a pivotal role but influencing evidence-based health information is not straightforward for library professionals; our ability to influence is dependent on a range of factors including local organisational culture and priorities. However, evidence-based health information can potentially make a positive contribution to the health care system by providing health information that is meaningful, informative and ultimately helps patients make decisions about their care.
Our findings and recommendations are outlined in our report along with other resources on the Knowledge for Healthcare web site.