Nicole discussed issues around accessible information, the perfect patient information journey and provided a chance for attendees to test their own levels of health literacy. #cilipconf19

1. Information as a Therapy
Wednesday 3 July 2019
Nicole Naylor, Head of Operations, Patient
Information Forum
Twitter: @PiFonline

2. The Patient Information Forum (PIF)
• Who we are: An independent, not for profit, UK membership organisation
for people working in, and involved with, healthcare information and
support.
• Our members: More than 650 members from 300 cross-sector
organisations. Our members work in the NHS, voluntary, commercial,
academic and freelance sectors.
• What we do: We support individuals and organisations by providing
resources, events, services and practical tools.
We also influence to ensure the quality of health information is high up on
the agenda and champion the expertise of those working in this field.

3. PIF is 21 and so is Google!
https://www.pifonline.org.uk/wp-content/uploads/2012/11/PIF-Timeline-21-Years-of-
Health-Information.pdf

5. Patient information is more than just a
leaflet
• Printed leaflets or booklets
• Digital media (including websites, apps,
video)
• Patient education programmes
• Decision aids including risk-benefit data
• Social media
• Personal health records
• Signage
• Appointment letters
• Blogs
• Verbal factual information given during
an appointment with a health
professional

6. What is high-quality health information?
• Clearly communicated and health literate
• Evidence-based and explains areas of uncertainty or where evidence is
limited
• Developed with users of all background
• Accessible (dyslexia and other learning difficulty, visual or hearing
impairments)
• It allows people act, to take control and to make informed decisions
about their health

7. Who has heard of the Information Standard?

8. Finding high-quality health
information
• The Information Standard kitemark scheme is
coming to an end.
• Real concern from PIF members – many NHS
Trusts automatically accept information that
carries the kitemark.
• New NHS approved Apps. This hosts third party
apps and uses different quality criteria.
• How will we signpost to high-quality
information in the future?

9. Do you think there should be a quality mark so that
patients can identify high-quality information?

10. Disruptors – a lot of change in 21 years
• ‘Dr Google’ the world’s favourite Doctor?
• 1 in 20 Google searches relate to health
• Most people find the Anthony Nolan Trust’s
website by Googling ‘What is blood cancer?’
• Digital has transformed the health
information landscape.
• Patients are much more active in seeking
information and less likely to be passive
recipients of care

11. What is digital literacy?
• 12.6 million people in the UK
lack these skills.
• More than 5 million have
never used the internet.
• More likely to be people who
are already considered
socially excluded.

12. Digital skills training has an impact
220,000 people trained in digital skills by Tinder Foundation
• 41% learned to access health information online for the first time (a
further 32% have learned to do this more effectively).
• 65% feel more informed about their health.
• 59% feel more confident using online tools to manage their health.
• 54% of learners in need of non-urgent medical advice said they would now
go to the internet before consulting their GP, to look at sites such as NHS
Choices.
• Health and digital: Reducing inequalities, improving society, Tinder
Foundation, July 2016

13. Have you heard of the Accessible Information Standard?

14. Accessible Information Standard
• From 1st August 2016, all organisations that provide NHS care and
/ or publicly-funded adult social care were legally required to
follow the Accessible Information Standard. Includes NHS Trusts,
GP practices and local government.
• The Standard sets out a specific, consistent approach to identifying,
recording, flagging, sharing and meeting the information and
communication support needs of patients, service users, carers and
parents with a disability, impairment or sensory loss.
https://www.england.nhs.uk/ourwork/accessibleinfo/

15. Accessible Information Standard
• All providers of NHS care or other publicly-funded adult social care
must meet the Accessible Information Standard (AIS).
• AIS applies to people who use a service and have information or
communication needs because of a:
o disability
o impairment
o sensory loss

16. Accessible Information Standard
• It covers the needs of people who are deaf/Deaf, blind, or
deafblind, or who have a learning disability. This includes
interpretation or translation for people whose first language is
British Sign Language. It does not cover these needs for other
languages.
• It can also be used to support people who have aphasia, autism or
a mental health condition which affects their ability to
communicate.
• When appropriate, AIS also applies to their carers and parents.
https://www.england.nhs.uk/ourwork/accessibleinfo/

17. Accessible Information Standard
• Identify – Find out if a person has any communication or information needs
because of a disability or sensory loss and if so what they are
• Record – Record those needs in a clear way that everyone agrees with
• Flag – Make sure a person’s needs stand out whenever their records are
checked.
• Share – Include information about a person’s needs as part of data sharing
and make sure it is in line with other information you have.
• Act – Make sure that people get information which they can access and
understand and receive communication support if they need it.

18. “I can do my banking on my phone, I can shop on my
phone, I can hail a cab on my phone, but the NHS throws
me back into the darkness”
Adi Latif from Ability Net speaking at a PIF event

19. Information provision is not a one off process
Perfect Patient Information Journey
• Each of these circles on the
patient journey represents a
point where information is
needed.
• A validated process of insight
work with healthcare teams
and patients to identify
information gaps in a patient
journey with a long term
condition.

20. • We want to remove the stigma of people being afraid
to say ‘I don’t understand the information I have
been given’.
• We want people to ask for high-quality information.
• We believe information should be seen as a therapy
in its own right.

21. “Producing and providing high-quality
health information is a skill which takes
practice, experience and reflective,
thoughtful evaluation to get right”

22. Any questions?
Visit www.pifonline.org.uk