The document discusses initiatives in the UK to improve access to health information for patients and the public. It outlines programs and policies from various UK government documents and health organizations that aim to provide individuals with information prescriptions, access to online health resources, and support for managing long-term conditions. The goal is to empower people with information and tools to make informed health decisions and better manage their own care.

1. Information = power?
Mark Duman
6 March 2006
Chair, Patient Information Forum

2. Scope
• The White Paper and beyond
• Some solutions
• Sharing
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3. The White Paper and beyond

4. Choosing Health
• Sets out the key principles for supporting the public to
make more healthier and informed choices in nine
areas:
– accidents
– alcohol
– diet and nutrition
– inequalities
– mental health
– physical activity
– sexual health
– substance misuse,
– and tobacco.
• Health Trainers; Health Direct; Personal Health Guides
• National Collaboration on Health Literacy - May ‘06
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5. “The three-year plan to put electronic
information ‘at the centre of health’ marks
one of the biggest strategic shifts in the
NHS since it was created in 1948.
For the first time, dispensing information will
be as important as dispensing pills or
performing operations”
Thursday, January 6 2005
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6. ‘Better information, better choices,
better health’
• Information Prescriptions
• Community info-mediaries
• Patient Information Bank
Source: www.dh.gov.uk/assetRoot/04/09/85/99/04098599.pdf
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8. ‘Better information, better choices,
better health’
• Information Prescriptions
• Community info-mediaries
• Patient Information Bank
• Power questions
• Information Accreditation System (IAS)
Source: www.dh.gov.uk/assetRoot/04/09/85/99/04098599.pdf
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9. January 2006 - DH Choice
About Choose and Book
• By December 2005 all patients in England will be offered at least four
providers for elective care.
How we are treated
• People will be able to record their lifestyle preferences on electronic medical
records. This will mainly happen through Healthspace.
Prescriptions
• By December 2004 patients will be able to pick up repeat prescriptions from
a pharmacy of their choice. By 2005 physiotherapists, radiographers,
podiatrists, optometrists and pharmacists will have prescribing authority.
Primary care
• People will be able to access primary care services in more flexible ways
such as walk in centres at train stations or football stadiums. Primary care
practices will be able to offer a wider range of services such as diagnostics.
Information to help patients choose
• How patients and the public will be supported to make informed choices
about their health and healthcare.
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10. 10

11. The new White Paper
 5.24 “give all people with long-term health and
social care needs and their carers an
‘information prescription’
 5.25 “By 2008, we would expect everyone with a
long-term condition … to routinely receive
information about their condition”
 5.26 “By 2010 we would expect everyone with a
long-term condition to be offered a care plan.”
(good practice guidance early in 2007)
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12. The new White Paper cont…
 2.29 Life Checks
 2.91 QOF Rewards
 4.81 Improving Immunization Rates
 4.101 Improving End-of-Life Care
 8.32 Patient Safety Outside of Hospitals 12

13. 'Supporting people with long-term conditions to self-car
• Examples of what central government, professionals and PCTs
have done and need to do in making sure those with chronic illness
can manage their health effectively.
• Information and tools are cited as important for empowering people:
– e.g. NHS Direct Interactive TV helps to keep elderly people up-
to-date and informed, and the medium is effective because they
usually both hard to reach and tend to suffer from long-term
conditions.
• However, it warns that many people without access to the internet
who "tend to make little use of self care information" must be
helped.
• The role of health professionals is to direct people towards
meaningful information and give "guidance on how to access it so
that people feel confident enough to use it."
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14. “Now I feel tall”
I strongly encourage all NHS organisations to take a close
look at how they deliver their services and to ask their
patients if their emotional needs are being met as well as
their physical ones.
They should ask patients if they are:
• getting good treatment in a comfortable, caring and safe
environment, delivered in a calm and reassuring way
• having information to make choices, to feel confident and feel
in control
• being talked to and listened to as an equal, and
• being treated with honesty, respect and dignity.
Sir Nigel Crisp NHS Chief Executive, November 2005
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15. Some solutions

16. “Such arrangements are bringing
March 1, 2006 jobs to thousands of people with
disabilities, including those with
Computer
spinal cord injuries and vision loss.
Technology Fast computers and broadband
Opens a World of connections have become so
Work to Disabled inexpensive and reliable that
People location is now not an issue for
certain jobs, like customer service.”
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17. NCC & Social Marketing – April ‘06
• Integrate health understanding and improvement education & action into all
of our lives and communities to achieve social justice, tackle wider causes
of ill health, reduce childhood poverty and support healthier ways of living
– Maximise the effectiveness of NHS Stop Smoking Services
– Improve services to help people who are overweight or obese & prevent
weight gain from an early age and encourage healthy eating
– Strengthen services to improve sexual health
– Deliver better services to prevent & treat alcohol problems
– Improve the lives of those who face lifelong illnesses, particularly older
people
– Provide support to improve mental well-being
• Develop, implement and evaluate a co-ordinated, evidence-based and cost-
effective approach to the management and delivery of all future marketing
communications activity related to health improvement
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18. Lloydspharmacy
“Ever since
Lloydspharmacy launched
this free [diabetes testing]
service in 2003, we have
tested over 750,000
people.”
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19. Health Rights Information
Scotland
• Clear, accurate and up-to-
date information about
patients' rights should be more
widely available and
consistent.
• Help NHS organisations
reduce the work involved in
them producing their own
• Patients will have a better
understanding of their rights
and choices and feel more
confident making decisions
about their health and
interacting with NHS staff.
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www.scotconsumer.org.uk/hris/leaflets/other2.htm

20. National Information Forum
A voluntary organisation
committed to encouraging
the provision of accessible
information, by every means
possible, for disabled
people, asylum seekers,
refugees and anyone else
disadvantaged in gaining
access to information.
www.nif.org.uk 20

21. Connect www.ukconnect.org – the
communication disability network
• Fifty people with experience of long-term
aphasia
• Lack of information was a major obstacle.
They described the frustrating experience
of being given information at the wrong
time or in a form they could not
understand.
• Given information when they could not
take it in, and they had no way of re-
visiting it.
• Their aphasia made it difficult for them to
make some initial enquiries: 'You cannot
always ask...'. Access to information was
severely restricted.
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22. National Programme for IT
• NHS Care Record Service
• NHS.uk
• NHS Direct Online
• Healthspace
• Choose & Book re appointments
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23. Advocacy
• Expert Patient Programme
• Patient Care Advisors (PCAs)
• Health Trainers
• Community info-mediaries
• Health Librarians
• Health professionals?
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24. Is the NHS getting better or worse?
• 1 million patients surveyed between 1998-2005
• Over half of their priorities were information-led:
– Fast access to health advice
– Involvement in decisions and respect for patients’ preferences
– Clear, comprehensible information and support for self-care
– Emotional support and alleviation of anxiety
– Involvement of family and friends and support for carers
www.pickereurope.org
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25. Summary
• Information for “patients” has come of age
• Seems that ‘everybody’s doing it’
• But…still issues of quality, access and utility
• Widening the health inequalities gap?
• Where is consistency, joined-up thinking, and
help at grassroots level?
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26. Sharing

27. The Patient Information Forum (PiF)
• Established with King’s Fund in 1997
• Original focus on acute trusts
• Umbrella group of just under 300 members involved in ‘health
communication’
• NHS Trusts, and NHS24, NHS Direct, NHS Direct Wales,
Picker , NICE, UK National Screening Committee (50%)
• Commercial e.g. BUPA, EMIS, Pfizer (20%)
• Patient groups e.g. Blood Pressure Association, British Lung
Foundation, Diabetes UK, MS Society (20%)
• Funding primarily from membership dues
• Efforts of Steering Group and Regional Co-ordinators members are
purely voluntary
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29. PiF Current Products & Services
• [PiF aware] – daily/ weekly email alerts
• Website
• Annual conference(s)
• Workshops – 25 people meet to ‘improve’ a
common theme
– Health information centres
– Information on screening
– Patient access to medical records
• Sharing experience, policies and proposals
• Training (with BMA Library and ABPI IPI) 29

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31. Top tips
• Health: Does it reinforce (or not contradict) our support for health and healthy
lifestyles?
• Care: Does it show respect for the audience and avoid unfair stereotypes? Does
the tone of the wording show care and empathy?
• Professionalism: Does it demonstrate pride in what we are doing? Are the
spelling and grammar right? Are we able to challenge poor standards in any
existing communications?
• Efficiency: Is the budget right for the task? Are the tone and style right for the
audience you are speaking to?
• Equality: Do the images span ages and cultures (where appropriate)?
• Clear: Is it easy to read and easy to understand?
• Straightforward: Does it avoid gimmicks and over-complicated design or
wording?
• Honest: Does it avoid misleading information and false promises? Does it
withhold information that the receiver has a right to know?
• Accessible: Has it been tested with the target audience? Do they understand it?
Are versions in other languages, symbols or formats needed? Is it easy to obtain?
• Respectful: Does it show respect for the receivers’ feelings and beliefs? Does that
‘funny’ drawing or headline risk offending anyone?
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33. In summary
“Patients will need better information if they are going to improve their
lifestyle, manage their disease, and participate in complex decisions
about treatment.
Better health-literacy education in schools will help, as will better-written
health materials and well-trained educators for patients.
But a great deal could be accomplished if doctors and other health
professionals took time, at the end of each consultation, to make sure
the patient had understood the key points discussed, and that they felt
free to ask questions.”
Source: Taking health literacy seriously. The Lancet 2005; 366:95
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34. Contact Details
Mark Duman
Chair
Handel House
13 Park Road
Manchester
M8 4HT
Tel: 07985 639 887
Email: chair@pifonline.org.uk
Web: www.pifonline.org.uk
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