The case for better patient information

It was a privilege to attend the Patient Information Forum’s Executive Circle event today.

If you have not come across the Patient Information Forum before, it is a membership organisation that exists to help creators of health information to do it well. Sounds simple? It isn’t! Let’s look at some facts.

Between 2006 and 2010, a bunch of funded pilots supported the introduction of “information prescriptions” – the business case for this is unassailable, you work out where the patient is at in their understanding, and give them the health literature that they need – some worked well, some did not and once the funding stopped, most simply ground to a halt.

About the same time the government introduced the Information Standard (IS), a kitemark for high quality, trustworthy information – there was a grant for early adopters and while painful, it was relatively straight forward to achieve accreditation (I helped a DGH though this process in a former life) – Yet fast forward 5 years and the IS remains pretty much unknown in an ever-growing cacophony of unaccredited online sources, self-help guides and ’google-driven’ options for ‘health’ information.

And this bites in the NHS. New Patient Information Forum research shows:

  • More than one in three say they did not get helpful information when they were first diagnosed. This is much higher (over half) among younger age groups
  • About the same proportion find it hard to access “trustworthy” information on their condition. Again, this is far higher in younger groups (about six in ten of 18-24 yr-olds identifying this as an unmet need)
  • One in five lack the information they need to discuss their condition with their doctor

The business case for better information is clear, and the Patient Information Forum has long been beating this drum. And here’s why. Evidence shows that:

  • Better patient information leads to more engagement in conditions, which leads to lower costs. UK-wide, potentially £30bn lower.
  • Better engagement leads to a reduction in preference misdiagnosis, increased compliance and improved outcomes
  • Better use of e-comms can lead to more self-care, improving outcomes and releasing capacity through hospital avoidance and reduction in major surgery
  • Better self-management of long-term conditions leads to fewer GP visits and less reliance on expensive medication
  • Better health information leads to better health behaviour: patients are ‘co-producers’ in healthcare

Information not standard

At Captive Health, we help our clients unlock better patient information for their service users.

One size does not fit all, so we tailor the digital world to the patient, and enable healthcare providers to drip-feed messages to users at each stages of their pathway or user journey, using their preferred communications channel. You can weave experiential surveys into the pathway as a way of gaining real insight. And you can pull in trustworthy content (text, document or video) from national sources like NHS Choices.

Click here to find out more, view our case studies or simply ask us for a free, no obligation online demo. You’ll be surprised to learn just how powerful and cost effective our solutions are.


Andrew Cockayne is Managing Director at Captive Health. Before that, he was a Patient Experience and Quality lead in the NHS, and an Organisational Development lead in social care.