In 1997, The King’s Fund supported the formation of the Patient Information Forum, which celebrates its 25th anniversary this year. 

The King’s Fund is also marking its 125th anniversary this year, and we at The King’s Fund Library Service have been exploring our own history. 

When the NHS was established in 1948, we set up the library to meet a demand from hospitals for information for both staff and patients across the NHS.

The King’s Fund’s first piece of work, Information booklets for patients, was based on a survey carried out in 1962 and was focused on how to produce patient information. 

Using best practice examples, the report was a practical guide on how to produce information for people who were about to go into hospital. 

Better information for informed decisions

Thirty years later, good quality patient information remained as important as ever, in the Fund’s 1991 annual report, the Patient’s Charter.

The Charter set out patients’ rights to NHS services, echoing a call from patient and professional groups for more information to be given to those using health care services.

Guide lines: better information literature for hospital patients, published in 1991, is surprisingly similar in content to the original guidance, from 1962, showing how ways of thinking about, creating and delivering information to patients had remained relatively unchanged for more than three decades.

Around the time PIF was established, The King’s Fund established a large study to assess the quality of existing patient information material. 

The study used focus groups to speak to clinicians and patients with a range of conditions, in order to establish what ‘good’ information should look like. 

The findings were published in 1998 and they were used to improve guidance on how to produce quality patient information. 

Building on this guidance, The (POPPi) guide: practicalities of producing patient information was published in 2000.

It was revised in 2003, after NHS England released Information for health and the Wanless report, incorporating the use of multimedia to provide appropriate information packages for a range of audiences.

In 2012, Patients’ preferences matter explored how failure to fully inform and involve patients in decisions about their care amounts to a ‘silent misdiagnosis’. 

It argued that providing better information helps patients to make decisions about their health care and choose the option that is best for them.

Key role of libraries

My own professional interest in patient information draws on this past work as well as from the queries the library service receives from patients and carers. 

These include having concerns about their care or a relative’s care, issues about accessing services or gaining better understanding to changes that might affect them such as the social care cap.

I was recently involved in a project developing training resources aimed at librarians and exploring how health libraries can support the evidence base for the production of patient information.  The recommendations included: 

  • The key role libraries have in supporting the production of patient information
  • Influencing clinicians to seek help to source evidence-based information, which ‘makes a positive contribution to health care systems, including empowering patients and families 

Currently I am collaborating with PIF and other agencies including Health Education England as part of the Health and Digital Literacy Partnership to ‘support citizens to develop the skills that they will need to access, assess and use health information in an increasingly digital environment.’

We still need greater awareness of accessibility

The King’s Fund’s recent focus has been on the increasing use of technology and its potential to ‘improve quality, efficiency and patient experience as well as supporting more integrated care and improving the health of a population’. 

With the pandemic accelerating the use of digital technologies in health and care, our work explores the opportunities and challenges of the digital revolution. 

To this end, we are currently exploring the issues of digital equity and how to incorporate digital inclusion to improve health and care services instead of creating additional barriers to accessing care or information individuals needs.

But the fundamentals in producing patient information still require work; we need greater awareness of the importance of accessibility of information in terms of language, culture and format. 

Also, enabling people to access trustworthy evidence based health and care sources which help individuals understand a procedure, condition or service in a way that works for them.