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The King's Fund - Why we need to signpost patients to credible health information

Credible health information supports people to make decisions about everything from vaccination to surgery.​ People who use trustworthy health information report feeling more able to manage their health, more prepared for appointments and more confident engaging in shared decision-making. For people with long-term conditions, it is a core element of care. ​​Reliable, evidence-based health information also​ helps ease pressure on NHS services.​ Signposting patients to trusted information can improve adherence to treatment, reduce avoidable GP visits and A&E attendance, and help tackle misinformation.​​

Yet Knowledge is Power – a recent report from the Patient Information Forum (PIF, a membership organisation for anyone producing health information and support) and Ipsos – revealed that half of adults in the UK are struggling to access trusted health information. The report reveals that there are stark inequalities in access to information and the impact of misinformation. Only 1 in 10 UK adults with long-term conditions are signposted to patient organisations, even though these are highly trusted by their users. ​​​1 in 6 UK adults say their views are not taken seriously by their health professional, rising to 1 in 4 for ethnic minorities.

Research from other organisations also mirrors these findings. A survey carried out by Kidney Care UK found that only 3 in 10 respondents were told how to contact kidney charities for further support. The Living Self-Care Survey 2024 found​ lack of access to good information is a major ​barrier to self-care, while research by the Personalised Care Institute found ​a​​ ​lack of personalised advice resulted in worsening conditions, people stopping treatment early, and additional GP and A&E visits.

Knowledge is Power​​ ​also highlights the difference credible health information makes – at both an individual and a system level. For example, a study by the Health Foundation of 9,000 people with long-term conditions found that those who felt confident to manage their health had 18% fewer GP visits and 38% fewer A&E visits. ​The ​Cognitant Kidney Essentials programme​, which uses avatars in multiple languages to help patients understand their renal health and how to self-manage their condition,​ has been used by more than 2,300 NHS patients. More than 9 in 10 users reported an increase in knowledge and there was a 66% reduction in face-to-face follow-ups.​

A lack of signposting to trusted sources means people turn to online search and social media. Knowledge is Power found 1 in 10 adults in the UK have been affected by misinformation, rising to 1 in 5 for people from ethnic minorities.

The data for the report was collected in summer 2024 just as Google introduced AI search summaries. ​National health charities in the UK have raised concerns​​​ with PIF ​​about the accuracy of these summaries and the tendency to reference US sources. ​Some organisations are already reporting a decline in website traffic​. This is a cause of concern for PIF members who are keen to work with Google to ensure search summaries reflect UK guidance and signpost to trusted sources. 

People are also turning to tools such as Chat GPT to ask health information questions. ​Unfortunately, although some information may be accurate and helpful, these tools can produce highly persuasive disinformation, including authentic-looking fake references, attention-grabbing headlines aimed at diverse demographic groups and fabricated testimonials. They can also spread existing misinformation and repeat racial and gender biases in health care. It is important that adequate safeguarding measures are put in place to stop AI from being used to spread disinformation and misinformation and there are effective reporting processes for when these safeguards are lacking. PIF recommends all health information producers have a clear and robust policy on the use of AI at an organisational level to mitigate threats to evidence-based, unbiased information. They must also be transparent about how AI is being used in the creation of health information to build and maintain public trust.​​​​

The current health information landscape highlights the need for signposting to credible health information. Knowledge is Power reveals that the public is keen for the NHS to​ increase its​ signpost​ing to​ trusted information and there is wide support for the verification of health information. 8 in 10 UK adults agree that access to trusted health information would help them manage their health, while 2 in 3 say independent verification of health information would increase trust. ​There is also a need to support health care professionals to find trusted information. More than half of health care professionals report difficulty sourcing reliable health information to share with patients.

So how do we activate the right to credible health information? Knowledge is Powermakes five recommendations, aligned with the three shifts proposed in the NHS 10 Year Health Plan. In summary these are: 

  1. A right to health information – health information is provided as a core part of patient care. 

  2. Tackle misinformation – through robust content standards and effective signposting of credible health information via health professionals and the NHS apps. 

  3. Tackle inequality – health information must be accessible and appropriate for all. 

  4. Lived experience as a metric – embedding patient experience as a measure of NHS performance using the NHS apps and single patient record. 

  5. Dedicated leadership – a mandate for the effective delivery of health information with a named lead in all NHS organisations. 

Knowledge is Power gives a clear view of how people want to access health information, the challenges they face and how we can start to overcome them. Embedding signposting to credible health information in health care will support the prevention agenda, creating safe digital spaces and helping the public navigate NHS care with confidence.

Original article link: https://www.kingsfund.org.uk/insight-and-analysis/blogs/signpost-patients-credible-health-information

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