Mark Duman6 March 2006

Chair, Patient Information Forum

Information = power?

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Scope

• The White Paper and beyond

• Some solutions

• Sharing

The White Paper and beyond

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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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“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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‘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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‘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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January 2006 - DH ChoiceAbout 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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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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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

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'Supporting people with long-term conditions to self-care'• 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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“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

Some solutions

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March 1, 2006

Computer Technology Opens a World of Work to Disabled People

“Such arrangements are bringing jobs to thousands of people with disabilities, including those with spinal cord injuries and vision loss. Fast computers and broadband connections have become so inexpensive and reliable that location is now not an issue for certain jobs, like customer service.”

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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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Lloydspharmacy

“Ever since Lloydspharmacy launched this free [diabetes testing] service in 2003, we have tested over 750,000 people.”

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Health Rights Information Scotland

www.scotconsumer.org.uk/hris/leaflets/other2.htm

• 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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National Information ForumA 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

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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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National Programme for IT

• NHS Care Record Service

• NHS.uk

• NHS Direct Online

• Healthspace

• Choose & Book re appointments

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Advocacy

• Expert Patient Programme

• Patient Care Advisors (PCAs)

• Health Trainers

• Community info-mediaries

• Health Librarians

• Health professionals?

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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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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?

Sharing

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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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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)

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Top tips1. Health: Does it reinforce (or not contradict) our support for health and healthy

lifestyles? 2. Care: Does it show respect for the audience and avoid unfair stereotypes? Does

the tone of the wording show care and empathy? 3. 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?

4. Efficiency: Is the budget right for the task? Are the tone and style right for the audience you are speaking to?

5. Equality: Do the images span ages and cultures (where appropriate)? 6. Clear: Is it easy to read and easy to understand? 7. Straightforward: Does it avoid gimmicks and over-complicated design or

wording? 8. Honest: Does it avoid misleading information and false promises? Does it

withhold information that the receiver has a right to know? 9. 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? 10. Respectful: Does it show respect for the receivers’ feelings and beliefs? Does that

‘funny’ drawing or headline risk offending anyone?

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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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Contact Details

Mark DumanChairHandel House13 Park RoadManchesterM8 4HT

Tel: 07985 639 887Email: chair@pifonline.org.ukWeb: www.pifonline.org.uk